tag:blogger.com,1999:blog-73277180651359645982024-02-21T09:45:49.941+00:00The Small PlacesLucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.comBlogger227125tag:blogger.com,1999:blog-7327718065135964598.post-30981700383650968842014-03-06T22:21:00.001+00:002014-03-06T22:29:27.288+00:00The Small Places is moving...<div dir="ltr" style="text-align: left;" trbidi="on">
...but <a href="http://thesmallplaces.wordpress.com/">it's only a click away</a>. All the old posts have been moved to the new site, but I'll leave them up here so any older URLs don't break. The new site is (I think) prettier, more accessible and also has features like enabling you to follow it using email updates. I hope you like it!</div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-9105669760040100312014-02-25T12:24:00.002+00:002014-03-02T17:32:21.525+00:00‘I was ever a fighter, so — one fight more’<div dir="ltr" style="text-align: left;" trbidi="on">
A powerful judgment concerning the liberty of Ms Manuela Sykes has <a href="http://www.bailii.org/ew/cases/EWHC/COP/2014/B9.html">recently been published on BAILLII</a>. This is another important decision which pushes 'best interests' decisions further towards a more subjective analysis, guided by a detailed and sympathetic analysis of the person's own (past and present) will and preferences, with a much greater acceptance of the 'dignity of risk'. In short, this is a judgment which (I think) showcases the Court of Protection operating at the closest it can within the existing law to the 'new paradigm' of disability rights articulated in connection with the United Nations Convention on the Rights of Persons with Disabilities. It also takes the case law on 'transparency' forwards by considering what happens when the person themselves wants to waive their rights to privacy. This decision is a very fitting tribute to a remarkable woman.<br />
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Westminster City Council had authorised the detention of Manuela Sykes in a residential care home using the DoLS. They appointed Ms Sykes' friend RS as her RPR, and he objected to her detention. It was Westminster who applied to the Court of Protection to review the authorisation. They appear to have done so under <a href="http://www.legislation.gov.uk/ukpga/2005/9/section/21A">s21A MCA</a> - which is critical if the detainee and her RPR are to obtain non-means tested legal aid (not all local authorities behave as badly as <a href="http://thesmallplaces.blogspot.co.uk/2014/02/local-authorities-behaving-badly.html">the unnamed authority Mr and Mrs D grappled with</a>).<br />
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This case is well worth reading in full. Ms Skyes was described by DJ Eldergill as having 'had a dramatic life, and the drama is not yet over'. She was a lifelong campaigner, an extraordinary and admirable woman. She reminded me of many formiddable, forthright and wonderful women I have met at Quaker meetings - she called to mind <a href="http://en.wikipedia.org/wiki/Dorothy_Day">Dorothy Day</a>. She was savvy - she had made an LPA for property and affairs (naming RS) and a 'living will'. Whilst the purpose of the detention was not linked to any medical treatment proscribed in the 'living will', DJ Eldergill regarded it as a relevant statement of her wishes, feelings, values and beliefs - particularly to the question of 'life expectancy and how much time is left which has a value to her.'<br />
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The chronology sets out how Ms Sykes had Alzheimer's dementia, and experienced a gradual but progressive decline in her ability to understand and process information about her environment and the people around her. There were (untried) allegations that she had a number of verbal and physical altercations with neighbours and carers. She did not permit visiting carers to offer much assistance with personal care or cleaning her home. Her weight dropped, the apartment became 'unhygienic and so cluttered as to be hazardous'. She was eventually detained under s2 Mental Health Act 1983. She was eventually discharged to a nursing home, rather than her own home, in her 'best interests'.<br />
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She was unhappy at not being allowed home, and had threatened suicide if she could not return home. Consideration was given of a trial return by the Community Mental Health Team. A decision was initially made that she should have a trial return home, possibly with a live in carer. However, later on the local authority felt this was not in her best interests, and would not approve payment for a live in carer. Her family felt that equity release to fund care at home was not a good use of her financial resources.<br />
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DJ Eldergill found that Ms Sykes lacked mental capacity, however he did observe in passing that:<br />
<blockquote class="tr_bq">
It is recorded that she has a tendency to become defiant when these issues are raised. This is logical and understandable because, unless one has a memory of the previous difficulties, the professional view must appear patronising and intrusive, and the problems made-up or grossly exaggerated.</blockquote>
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I've noticed a growing tendency of judges in the Court of Protection - exemplified most recently in <i><a href="http://www.bailii.org/ew/cases/EWHC/COP/2014/342.html">Re JB</a> </i>- to be increasingly alert to the reality that capacity assessment comes down to an exchange between assessor and assessed, and often people may refuse to engage with that assessment for reasons related to how they feel about the capacity assessor, or because it is <i>human nature </i>to be reluctant to engage with the issues capacity assessments often probe.</div>
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Thus the question before the court was whether the detention was in her best interests. 'Patently', DJ Eldergill observed, Ms Sykes was deprived of her liberty: this 'situation is not of the subtle Cheshire West kind'. Regarding what outcome was preferable, DJ Eldergill commented that 'There is, of course, no solution', no option that would 'provide Ms S with security, safety, liberty, happiness, an absence of suffering and an unrestricted home life'. </div>
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DJ Eldergill paid considerable attention to Ms Sykes' wishes and preferences. He himself met with her at her nursing home in the company of her solicitor. He noted the consistency of her wishes, the impact on her mental health of remaining in the nursing home, ' her attitude towards institutional life and the importance to her of her freedom. She values her privacy and the sense of security at home.' She was still 'able to appreciate and express the value of being at liberty and being allowed autonomy.' DJ Eldergill placed great emphasis on the value of liberty:</div>
<blockquote class="tr_bq">
The importance of individual liberty is of the same fundamental importance to incapacitated people who still have clear wishes and preferences about where and how they live as it is for those who remain able to make capacitous decisions. This desire to determine one’s own interests is common to almost all human beings. Society is made up of individuals, and each individual wills certain ends for themselves and their loved ones, and not others, and has distinctive feelings, personal goals, traits, habits and experiences. Because this is so, most individuals wish to determine and develop their own interests and course in life, and their happiness often depends on this. The existence of a private sphere of action, free from public coercion or restraint, is indispensable to that independence which everyone needs to develop their individuality, even where their individuality is diminished, but not extinguished, by illness. It is for this reason that people place such weight on their liberty and right to choose.</blockquote>
He observed in passing that 'The law requires objective analysis of a subject not an object' (language reminiscent of the literature on the CRPD). He interpreted the principle of beneficience as 'an obligation to help others further their important and legitimate interests. In this important sense, the judge no less than the local authority is her servant, not her master.' <br />
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Eldergill's decision was heavily contextualised by who Ms Sykes was, and is. She had an unambiguous sense of right and wrong, never lacked courage, she had a strong will to change the world: 'she has always wanted to be 'someone', to have influence.' These and 'her desire for freedom and autonomy are magnetic factor'. DJ Eldergill then characterised the case itself in a striking way, as a political act by Ms Sykes:<br />
<blockquote class="tr_bq">
Realistically, this is her last chance to exert a political influence which is recognisable as her influence. Her last contribution to the country's political scene and, locally, the workings and deliberations of the council and social services committee which she sat on.</blockquote>
DJ Eldergill heard that Ms Sykes' nieces and Reverend felt that she should remain in residential care, he accepted that there were serious risks, but asked regarding a trial at home 'If not now then when?' He emphasised the importance of home, that some of the risks could be managed (but not eliminated), the reality that risks of falling exist in a care home as well as at home, and that 'Ms S is 89 years old and her life is drawing to a close. It is her life.' He authorised a one month trial at home.<br />
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Before finishing, you might be wondering why - unusually - Ms Sykes was named in this judgment. The judgment reports that 'Ms S’s ‘strong wish’ was for her situation to be reported and to be named as the person with whom these proceedings are concerned.' Her litigation friend supported her request. The Press Association were notified and applied for permission to name Ms Sykes. DJ Eldergill considered the privacy matters (with the cracking line, which I'm sure will be taken up henceforth in 'transparency' debates: 'a GP is not a ‘secret doctor’ because the press have no unqualified right to be present during patient consultations or to report what is said'). He reviewed the transparency guidance and case law, and concluded there was good reason for allowing Ms Sykes (but not her RPR or family or professional carers) to be named, on the basis that:<br />
<blockquote class="tr_bq">
She has always wished to be heard. She would wish her life to end with a bang not a whimper. This is her last chance to exert a political influence which is recognisable as her influence. Her last contribution to the country's political scene and the workings and deliberations of the council and social services committee which she sat on.</blockquote>
By choosing to be named, there is a much greater likelihood that this case will prompt discussion of a wide range of important matters - from the value of liberty for those found to 'lack mental capacity', to the reality that there is not adequate funding in the social care system to safely support people to remain in their own homes. Ms Sykes may have been found to lack mental capacity in relation to her own care, but she seems to have a profound understanding of the political.<br />
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<b>Postscript (27/2/14)</b><br />
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Ms Sykes' story has been covered by many national newspapers now - as she wanted. There is <a href="http://trebusprojects.org/read/stories-from-the-archive/manuela">a powerful interview with her </a>from 2011 on the Trebus Project, which collects the life stories of people with dementia. I wanted to quote from some of what she said. In the context of talking about her lifelong campaign to raise awareness of ill-treatment of animals, she said:<br />
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But now I’ve seen people treated just as badly… people in care… people with dementia… drugged and sedated with a cup of tea and a digestive biscuit… It shows contempt for the elderly… It’s been like that for gener-bloody-rations…</blockquote>
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It has been getting worse for the past couple of decades… To make a change in care we need to make a change in the politics of care… (a) It’s ignorant and (b) it’s… indefensible… cheaper and easier.</blockquote>
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Dementia… I was told mummy had it… I was told I would get it… I was told. I was told that it hits more women than men… and older people… and mostly women… they’re marginalised… and stigmatised… and hidden. I’m very distressed at the way the subject is avoided.<br />
It is rare for a carer to have real integrity, and I should say this applies to the people that run the so-called care homes… They take advantage in so many ways, including theft... If you examine the character of quite a lot of people involved in… quote ‘care’… you do a bit of research and… you’ll find a lot of people involved in care are… are… bossy boots… I did an article on that… Go and read it in the British Library… Forty years of it… I raised quite a mail bag… most of it unprintable… They really were very angry… I’m blunt… I don’t believe in wasting words… I had the experience of nursing Mummy… I’ve seen what happened in the hospitals…</blockquote>
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[...]</blockquote>
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Dementia care in this country doesn’t exist... The problem is that… a great many people who are supposed to be carers… have contempt… for the loss of memory… and… the mental problems that that leads to… and take advantage of it. They behave in the most diabolical way and think they can get away with it… because… no one would believe the poor woman with dementia.</blockquote>
Ms Sykes recalls writing an article on this; I haven't been able to find it on Nexis or elsewhere, but if anybody knows where it is I'd be really interested to see it. You might also be interested to know that the title of this piece is from a poem called <i><a href="http://classiclit.about.com/library/bl-etexts/rbrowning/bl-rbrown-prospice.htm">Prospice </a></i>by Robert Browning, which is quoted in the judgment.</div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com2tag:blogger.com,1999:blog-7327718065135964598.post-30454485930384749432014-02-25T09:31:00.000+00:002014-02-25T10:53:19.131+00:00Preventable<div dir="ltr" style="text-align: left;" trbidi="on">
I imagine there is only one thing worse than your son or daughter dying at the age of 18, and that is learning that it was preventable. Yesterday <a href="http://www.southernhealth.nhs.uk/news/report-into-death-sparrowhawk/">Southern Health published the report </a>of the independent investigation into <a href="http://thesmallplaces.blogspot.com/2013/07/lb.html">the death of LB</a>. That report found that LB’s death was preventable.<br />
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<b>How does a young man drown in the bath in a hospital? </b><br />
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LB had been diagnosed with epilepsy when he was 16. He had a seizure on Christmas day in 2012. It was thought that this might have been triggered by fluoxetine (Prozac), which he had started taking a few days beforehand. He was admitted to an assessment and treatment unit run by Southern Health on 19 March 2013.<br />
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When somebody is admitted to the unit, a medical assessment should be conducted – the investigators stated 'We find no evidence of a medical review on admission during which an epilepsy profile could have been completed.' They also found that an epilepsy profile should have been compiled, but there was no record of this. A risk assessment was completed on 22 March. It outlined risks posed by LB to self and others. It did not consider his epilepsy. Initially a decision was made to place LB on 15 minute observations. As the investigators noted:</div>
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'Fifteen-minute observations will not mitigate the risk of having a seizure when in a bath. It is possible to drown in a few minutes. As a result, any observations undertaken in relation to CS’ bath time should have considered remaining in sight or sound of CS throughout his bathing.'</blockquote>
In April LB was put on Risperidone – a medication which the investigators noted can lower the threshold for an epileptic seizure. There were signs that he may have had unobserved seizures. He had bitten his tongue, and when his mother visited she found him to be sleepy as he often was after a seizure. She emailed staff, but this wasn’t discussed at the next clinical team meeting. There were other signs – LB had also possibly been incontinent, had unexplained nose bleeds and his mood was unsettled. They moved LB downstairs and increased his night time observations, but investigators found no evidence that increasing his medication was considered, he was not referred to his neurologist, and his bath time observations were not increased. <br />
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Staff member “S3” – whose role is only described as a ‘senior clinical leader’ (p89) – was asked what his role was in overseeing the risk management plan for LB: ‘None, other than awareness of risk.’ The investigators observed that there were only five patients in the unit, and it would be ‘reasonable’ to expect S3 to have a comprehensive knowledge of their care plans and the precautions to be taken if LB had a seizure.<br />
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<b>'CS had a bath on the morning of 4 July. He was seen in the bath by nursing staff at 09:00 and had been reminded that he was going out that day. Fifteen minutes later CS was found submerged in the bath. He died later the same day.'</b></blockquote>
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The investigators concluded that LB’s death was preventable, defined as a situation where ‘professionals had the knowledge, the legal means and the opportunity to stop the incident from occurring but did not take steps to do so.’ </div>
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The unit was found to have failed in appropriately profiling and risk assessing LB’s epilepsy, especially in relation to the 15 minute observations of LB in the bath. The Unit appeared to believe that LB’s epilepsy was well controlled, inaccurately recording that he had not had seizures for several years. The NICE guidance on epilepsy recommends specific risk assessments around showers and bathing; this never happened. Had they spoken to his family about it, they would have told the Unit that they never left him unobserved in the bath, but investigators found no evidence that they were asked. The Investigators’ clinical advisor told them: ‘My professional and clinical opinion is that supervision of CS during his bath time would have prevented the incident from happening.’</div>
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<b>A life, and death, like no other</b><br />
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LB’s death was preventable. Last year the <a href="http://www.bris.ac.uk/cipold/">Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)</a> study reported that 42% of deaths of people with learning disabilities are ‘premature’, defined as:<br />
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‘…without a specific event that formed part of the “pathway” that led to death, it was probable that the person would have continued to live for at least one more year.’</blockquote>
Mencap called this phenomenon <a href="http://www.mencap.org.uk/campaigns/take-action/death-indifference">Death by Indifference</a>. This is a national scandal, but we are not scandalized enough. <br />
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This isn’t the only national scandal that the investigation report brought to mind. The investigators didn’t only find that LB’s death was preventable, they found that there were failings in ‘the overall care provided by the unit.’ A few months after LB’s death <a href="http://www.cqc.org.uk/directory/rw11v">the CQC inspected the unit</a> and they found failings for many standards that they inspect against. They described it as ‘an impoverished environment with little therapeutic intervention or meaningful activities to do.’ </div>
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How was this still happening in 2013? This occurred six years after the Healthcare Commission slammed assessment and treatment services for warehousing people in such impoverished environments in <a href="https://www.warwickshire.gov.uk/Web/corporate/wccweb.nsf/Links/6EA919F805F3B54180257885002E4C6B/$file/A+Life+Like+No+Other.pdf"><i>A Life Like No Other</i></a>. In 2009 the CQC went back and <a href="http://www.cqc.org.uk/sites/default/files/media/documents/cqc_ld_review_national_overview.pdf">re-inspected a sample of assessment and treatment units</a> and found that many things had got worse. In 2012, after the Winterbourne View scandal broke, the CQC reported on a <a href="http://www.cqc.org.uk/sites/default/files/media/documents/cqc_ld_review_national_overview.pdf">massive investigation</a> into assessment and treatment units of people with learning disabilities. Margaret Flynn wrote a comprehensive <a href="http://hosted.southglos.gov.uk/wv/report.pdf">Serious Case Review</a> into what happened at Winterbourne View. So many themes, in all these reports, resonate with what happened to LB.<br />
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<b>Restraint</b><br />
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Within days of admission, LB was subjected to supine and prone restraint – a kind of restraint which Margaret Flynn warned about in the Serious Case Review for Winterbourne View. <a href="http://www.mind.org.uk/news-campaigns/campaigns/crisis-care/about-the-campaign/">Mind recently described</a> prone restraints as ‘particularly dangerous and life threatening… dehumanising and distressing and should have no place in a healthcare setting where people go to recover.’<br />
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<b>Exclusion of family</b><br />
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<strike>For many people with learning disabilities.</strike> For many <i>people </i>(with or without learning disabilities) our families are our most trusted and important support networks. Yet a key finding of several reports is the exclusion of the families of people with learning disabilities by service providers. In 2007 the Healthcare Commission observed that ‘In acute and assessment centres only 11% of people had been visited by family or friends’. In 2012, the CQC found evidence that some assessment and treatment centres were restricting families from visiting their relatives. In another post-Winterbourne report, entitled <a href="http://www.mencap.org.uk/outofsight">Out of Sight</a>, Mencap and the Challenging Behaviour Foundation wrote:<br />
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Other families will recognise this as what has become an all too familiar story: when local services fail to offer the right support, their loved one is sent to one unsuitable place after another and, step by inevitable step, the family slowly loses control.</blockquote>
The <a href="http://www.parliament.uk/business/committees/committees-a-z/lords-select/mental-capacity-act-2005/">House of Lords Select Committee on the Mental Capacity Act 2005</a> has also heard evidence of the exclusion of family in decisions made by health and social care professionals.<br />
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The investigation into LB’s death found that ‘Despite staff having contacted CS’ family to provide updates about his care, we found little written evidence of engagement between trust staff and CS’ family when he was first admitted’. The Unit adopted a system whereby the family had to telephone in advance to ask LB for permission to visit. LB’s mother recalled being told by staff ‘you do realise you can’t just turn up, he’s an adult and you’ve got to understand that’. Staff member S3 complained that LB’s mother ‘has made much of...this issue of whether or not she had the right to information and the right to visit. [CS] was an adult.’ The Unit appear to have decided that LB’s mother was a threat to his adult identity, and used this as the basis to keep them at arm’s length. Yet the report documents no evidence that LB wanted his family kept at arm’s length, or ever refused their visits. </div>
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Being an adult doesn’t mean being stripped of any supports or input from one’s family. Nor does it mean adopting this permission-seeking system, or not sharing information with relevant others. I have spent more time than I would like over the last few years visiting (adult) relatives in hospital, and we have never had to adopt a 'phone ahead' system like this. Wards have been proactive in ensuring that they have secured the requisite consent to share information with family members chosen by the patient. Hospital is a lonely and frightening place, discharge planning is precarious and reliant on family support, and care and medical staff often need the knowledge which families can offer to help deliver truly person-centred care.</div>
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This is a horrible perversion of ‘disability rights’. LB’s family were his support network; there are countries which – in line with the UN Convention on the Rights of Persons with Disabilities – give these relationships of support formal legal recognition, allowing somebody in LB’s position to nominate supporters. Such supporters would have legal rights to be involved in accessing information and helping a person to understand the decisions facing them, and helping to advocate for them or even make decisions on their behalf (with the person’s permission). How different, I sometimes wonder, would stories like LB’s and that of Steven Neary’s be, if we had proper formal recognition of the role of their support networks, rather than qualified and widely disregarded “rights to be consulted” by best interests decision makers? I’m not suggesting that people’s families should act as guardians, I’m suggesting that they should be given the status and recognition by services that the person themselves would want.<br />
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<b>Person-centred care?</b><br />
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Another theme of successive reports into the care of people with learning disabilities in assessment and treatment units – from <i>A Life Like No Other </i>to the post-Winterbourne inspections – is a lack of ‘person centred’ care. The unit where LB was cared for was described as taking a ‘person centred holistic approach’. Yet when LB’s mother ended up having to convene a Care Program Approach meeting because nobody else was taking the lead in developing a discharge plan (yes really, more on which below) one clinical lead (S1) complained that ‘it seemed that this was becoming a person-centred meeting’. The investigators commented ‘The apparent discomfort that S1 felt is difficult to understand because the approach to person-centred planning is not unusual in learning disability services.’<br />
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Clinical lead S3 described the Unit in the following terms to investigators:<br />
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“…effectively an assessment unit in a rather old-fashioned model akin to a generic psychiatric acute admissions ward.</blockquote>
<blockquote class="tr_bq">
“It’s not a nursing home, it’s not a residential home, it’s not supported living. It’s a place of clinical assessment and treatment, it’s part of the specialist assessment and treatment services. It’s a kind of politically correct obfuscation this nonsense about pretending that it’s anything else. It’s administered by doctors, nurses and clinical psychologists for the purpose of assessing people’s mental and physical health and the way that impinges on their functioning. It’s not social care at all, except, of course, that people are social beings and therefore social life goes on. It’s a clinical inpatient facility.”</blockquote>
I am unclear whether S3 meant this as a statement of regret; I truly hope so. I cannot comprehend how anybody working in a learning disability assessment and treatment unit – in the wake of these successive scandals – could think that an ‘old fashioned’ ward was something to be desired, and that it was mere ‘political correctness’ which had prompted a desire to do things a different way.<br />
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<b>Mental health and human rights law</b><br />
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The investigators appear to have done a very thorough job on examining LB's care - both for his epilepsy, and his wider care. However, one issue which they appear to have focussed less critical attention on was the Unit's compliance with mental health and human rights law. One of the findings of the CQC was that another patient was illegally deprived of their liberty.</div>
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LB was in an inpatient assessment and treatment Unit, there are signs throughout the report that he did not want to be there - so what was the legal basis for keeping him there, and were his human rights appropriately respected? I am not sure if this will be the focus of future investigations.</div>
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Initially LB was admitted under the Mental Capacity Act 2005 - were the appropriate capacity assessments completed and recorded and were best interests procedures followed? Within days, however, he was detained under s2 Mental Health Act 1983. During this period, was he given the requisite support to exercise his rights (e.g. timely access to information about rights to appeal, advocacy if necessary, support to apply to the Tribunal if he wanted to)?</div>
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When the s2 Mental Health Act 1983 authorisation expired, was he still deprived of his liberty? An application for authorisation under the DoLS was made about a week later - was this the appropriate legal framework for a young man who was admitted for the purpose of psychiatric treatment, and who was objecting? In any case, the DoLS authorisation was refused - the investigation report does not tell us why. I would hope that future investigations focus attention on the quality of decision making by the supervisory body here. The net result of all of this is that from 16th April until LB died, he was not formally detained under any legal framework at all - and so there was no external scrutiny of his care from a Tribunal, Approved Mental Health Professional or any of the DoLS safeguards.</div>
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<b>Discharge planning</b></div>
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One thing we know from the national reports mentioned above – and <a href="http://www.cqc.org.uk/sites/default/files/media/documents/cqc_mentalhealth_2012_13.pdf">CQC’s annual reports on the MHA</a> - is that people with learning disabilities are often in units like this for far too long because there is a lack of focus on discharging them with the appropriate support. In LB's case, the investigators found that ‘The working relationship between the unit and the community team has not always been good. The community team has not felt appropriately involved and engaged in processes such as those around discharge planning’. LB's own mother ended up convening the CPA meeting. What difference would it have made if LB had been under the MHA or the DoLS, and supported to enjoy the appropriate safeguards such as advocacy or appealing to a Tribunal? Perhaps none - we know that a Tribunal didn't discharge anybody from Winterbourne View. But it <i>might </i>have focussed minds on discharge planning with appropriate support.</div>
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What were the clinical leads doing to hasten LB’s discharge? The responsible clinician told the investigators that 'I wasn’t terribly involved towards the end because I didn’t see a role for psychiatry at that time.' S3, the other ‘clinical lead’, told investigators:</div>
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<blockquote class="tr_bq">
“I did not know why he was with us, I didn’t think he should be with us, and it was a matter of regret to me that he had come and that he had not been swiftly discharged. There was one question and one question only that I thought was fitting possibly to be answered with an inpatient setting, which was: was there an element of psychotic illness relevant to his challenging behaviour, and I think that within a few days we had satisfied ourselves that there was no evidence to suggest that. I would say that he possibly need not have come into hospital for us to address that question, and that once that question was answered he should have swiftly been discharged from hospital.”'</blockquote>
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LB was in the unit under no clear legal authority, possibly unlawfully deprived of his liberty, both clinical leads did not think he should have been there, and yet he was. He was stuck in an unsafe, impoverished environment, with nobody taking charge of helping to support him and his family with a return home with the appropriate services. And then he died. All of this was preventable.</div>
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Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com1tag:blogger.com,1999:blog-7327718065135964598.post-54284151108863030682014-02-19T15:45:00.000+00:002014-02-20T11:56:01.741+00:00Some more messages on the Mental Capacity Act 2005<div dir="ltr" style="text-align: left;" trbidi="on">
This is another post on evidence given to the <a href="http://www.parliament.uk/business/committees/committees-a-z/lords-select/mental-capacity-act-2005/">House of Lords Select Committee on the Mental Capacity Act 2005</a> from people with experience of having decisions made on their behalf under the MCA. I'm afraid I haven't yet finished reading the volumes of evidence from the Committee, so I apologise for not spotting this sooner. It was brought to my attention that the Committee has been on another visit - <a href="http://www.parliament.uk/documents/Mental-Capacity-Act-2005/mental-capacity-act-2005-vol1.pdf">reported in the first volume of evidence</a> (p647) - to meet people with dementia and talk to them about the MCA. The meeting was hosted by The Forget Me Nots, a group of people with dementia from the area of East Kent, who meet regularly in Canterbury. <br />
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In their visit to the Forget Me Nots, people with dementia talked about their changing experiences of making decisions. One person said 'It’s like the door is slowly shutting'. Some people's comments suggested they were content for their loved ones to make some decisions - 'I was the main decision-maker … but now my wife can think it out better than I can' - and some expressed feeling more 'fragile' and wanting to be protected. However, other people's views on other people making decisions were less positive, one person said, 'My wife has made decisions for me … it doesn’t feel good. I want to make decisions'.<br />
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Much of the evidence focuses on experiences of people dealing with bureaucracy - banks, making Lasting Powers of Attorney (LPAs), etc. Some people expressed frustration with the cost and difficulty of making LPAs, some saying that it could be difficult to find somebody to act as LPA. Most agreed that LPAs were important, but a lot of people found it hard to get around to making one. There was a general feeling that there was insufficient information about the MCA, and some people didn't like the terminology of the 'mental capacity' because of the association with mental illness. Others didn't like labels like 'carer' or 'suffering', one person saying 'We still care for our partners even when we have dementia'.<br />
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The other evidence from a person with first hand experience of the MCA comes from Simon Cramp, and is on p478 of the first volume of evidence. Simon describes himself as '42 years old and I have a learning disability and dyslexic and dyspraxia'. Simon is also a fellow of the <a href="http://www.centreforwelfarereform.org/">Centre for Welfare Reform</a>; I once had the pleasure of meeting Simon at a Housing and Support Alliance conference, he is a very active campaigner for rights to inclusion and self-determination. Simon submitted evidence to the Joint Committee on the Draft Mental Incapacity Bill (<strike>he's <a href="http://www.publications.parliament.uk/pa/jt200203/jtselect/jtdmi/189/18928.htm">listed here</a>, but I am unable to find a copy of his evidence online and my past efforts to obtain a hard copy of the evidence to the Committee have been unsuccessful, sadly </strike>Simon's evidence is <a href="http://www.publications.parliament.uk/pa/jt200203/jtselect/jtdmi/189/3102111.htm">here </a>and <a href="http://www.publications.parliament.uk/pa/jt200203/jtselect/jtdmi/189/3102116.htm">here</a>; thanks TH!). He was involved in campaigning for some important changes to the original Bill, including getting the name changed from the Mental Incapacity Bill to the Mental Capacity Act; he also helped to campaign for the inclusion of advocacy (hence the IMCA service). Simon thinks that the impact of the MCA has been limited: 'after the great fan fair apart from court cases you hear very little in the media or online'. <br />
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Simon is critical of the quality of available online information about the MCA, and the depth of detail in the code of practice (he asks whether anyone except professionals ever read it). He suggests that the government should issue pocket book or cards, summarising the Act's core principles and people's responsibilities. Simon thinks there needs to be a publicity campaign on the Act, and that it might need updating to deal with developments in adult social care. He is critical of professionals' understanding of the MCA and he doesn't think it has fostered appropriate involvement of carers and families in decision making. This is what Simon has to say about the accessibility of the Office of the Public Guardian and the Court of Protection:<br />
<blockquote class="tr_bq">
'...it a joke that everything has to be fill in online as in my book if you have a disability and struggle to write this in a way that is easier for you. Then the issues about it more accessible online is laughable it about government saving money which is not what the prinpalables is about this act it about giving people choice.'</blockquote>
So, more food for thought from both Simon and the Forget Me Not group on the need to make the information and the administrative and legal apparatus of the MCA more accessible.</div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com2tag:blogger.com,1999:blog-7327718065135964598.post-19794659226733102162014-02-18T15:42:00.002+00:002014-02-20T12:44:03.587+00:00Local authorities behaving badly<div dir="ltr" style="text-align: left;" trbidi="on">
When <a href="http://www.bailii.org/eu/cases/ECHR/2004/720.html">HL was deprived of his liberty </a>in Bournewood hospital without any legal safeguards, it took his carers - Mr and Mrs E - just under five months to secure his release. Far too long. The Mental Capacity Act 2005 deprivation of liberty safeguards (DoLS) were introduced to ensure that people in HL's position were afforded detention safeguards and a proper remedy to comply with Article 5(4) of the European Convention on Human Rights - the right to 'take proceedings by which the lawfulness of his detention shall be decided speedily by a court and his release ordered if the detention is not lawful.' How's that working out?<br />
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Well, admittedly the DoLS don't apply in supported living, but it took <a href="http://www.bailii.org/ew/cases/EWHC/Fam/2010/621.html">Mr E's</a> family about fourteen months to get Mr E home again, when he was unlawfully deprived of his liberty. It took Mark Neary just under 12 months to get <a href="http://www.bailii.org/ew/cases/EWHC/COP/2011/1377.html">Steven Neary </a>home again, using the DoLS. And today we learned that it took <a href="http://www.bailii.org/ew/cases/EWHC/COP/2013/B34.html">Mrs D</a> over a year to return home to live with her husband, after she had been deprived of her liberty using the DOLS. <br />
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The judgment in <a href="http://www.bailii.org/ew/cases/EWHC/COP/2013/B34.html">The (Unnamed) Local Authority v Mrs D</a> was not a finding by the Court of Protection of unlawful detention, but was the Court's approval of a compromise agreement where the local authority agreed to pay Mrs D £15,000 and her husband a further £12,500 for violations of her Article 5 rights and both their Article 8 rights. The facts of this case are chillingly reminiscent of what happened in <i>Neary v LB Hillingdon. </i><br />
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Mrs D went into respite care for a few weeks in August 2011, but the local authority refused to discharge her back home to live with Mr D when he asked. With both Mr and Mrs D asking for her to go home, the local authority recognised that she was deprived of her liberty, but no authorisation was sought by the care home until a month later (in October 2011). <br />
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The first standard authorisation was granted, and 'was explicitly stated to be conditional upon an application to the Court of Protection being considered' [20]. But the local authority didn't apply to the CoP. Neither did it apply to the CoP when a second authorisation was issued and the same recommendation was made. Nor the third. With Mr D continuing to oppose Mrs D remaining in the care home, and Mrs D becoming increasingly distressed about being there, staff apparently kept discussing their intention to go to the Court of Protection at meetings, but somehow didn't get around to it until May 2012.<br />
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When the local authority did eventually apply to the Court of Protection, it was for a determination of Mrs D's best interests and an injunction against her husband. They neglected to mention that this case concerned deprivation of liberty and so the Court of Protection - not realising the urgency of the situation - listed a hearing for June. <br />
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In the meantime, the local authority didn't bother to renew the standard authorisation. The judgment does not report why. Perhaps they'd adopted a creative reading of the <a href="http://www.bailii.org/ew/cases/EWCA/Civ/2011/1257.html">Cheshire judgment</a> and decided that Mrs D was not deprived of her liberty. But even the most restrictive reading of <i>Cheshire</i> still considers that where a person has somewhere else to go - as HL, Steven Neary and Mr E did - 'matters are very different' and the person may well be deprived of their liberty. Perhaps they mistakenly believed that having put the matter before the Court of Protection there was no need for an ongoing authorisation.<br />
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When, eventually, experts were instructed by the Court to report on Mrs D's best interests, they recommended that she go home. The local authority continued to resist their recommendations until December 2012, when they changed their mind and put in place a care plan for Mrs D's return. She had been in the care home around 13-14 months by this point.<br />
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Mrs D's lawyers - instructed by the Official Solicitor - sought damages for violations of her and Mr D's human rights. The local authority conceded that Mrs D had been unlawfully detained when it stopped bothering to apply for DoLS authorisations, but disputed the contention of Mrs D's legal representatives that the initial authorisations which they had issued were invalid as they had not complied with the conditions requiring them to apply to the Court of Protection. Mrs D's lawyers felt pretty confident that if they did pursue this issue they would win, but it was felt not to be a proportionate use of public funds and in any case Mrs D's cognitive functioning was deteriorating and would 'be wholly unaware of any admission or judicial finding of the breach of her Convention rights', so it was felt not to be in her best interests.<br />
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The Court reviewed the (scant) published judgments on damages awards for violations of Article 5 and 8 ECHR in connection with the MCA and decided that whilst £15,000 for Mrs D and £12,500 for Mr D was towards the low end of the spectrum (in contrast with <i>Neary</i>, which was £35,000), it was within the acceptable range. They approved the compromise.<br />
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Whilst one can fully understand the Court's reasoning, and that of Mrs D's lawyers, that it would not bring her any significant benefit to pursue the case, it is unfortunate for everybody else that the question of the legality of the initial authorisations was not decided by the Court of Protection, nor the Article 5(4) issues. This is one of the key problems with the DoLS - that the appeal mechanism is inaccessible unless supervisory bodies initiate an application, and they don't. A hearing on this matter might have considered precisely <i>how </i>a case is supposed to go to the Court of Protection - should the local authority apply (as <i>Neary </i>seems to suggest), or is this the purpose of an IMCA under s39D MCA? Was there even an IMCA referral in this case? It could also have decided the important question of whether a BIA really can impose conditions on the supervisory body (I think technically, they probably can't unless the care home was run by the council, but I'm not sure that means the authorisation was sufficient to comply with Article 5 in the absence of an application to the Court).<br />
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In any case, this judgment makes for depressing reading. This was a local authority who knew it was supposed to go to the Court of Protection and then didn't for many months (one also feels for the unheeded BIA in this case, recommending that an application be made). A woman was deprived of her liberty and given no adequate support to exercise her Article 5(4) rights to challenge that, despite her protests and those of her husband. A couple who had lived together for 37 years were forced to live apart for over a year, although experts eventually agreed that it was in their best interests to live together. It took the DoLS over a year to reunite them. As this case shows, failure to apply to the Court of Protection when a person is deprived of their liberty and is objecting is no trivial procedural mistake: these are stolen days and weeks and months which this couple will never have back. The casual way that the liberty of older and disabled people is treated under the MCA DOLS should be giving us all some sleepless nights.</div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com2tag:blogger.com,1999:blog-7327718065135964598.post-74386629727899533672014-02-18T10:10:00.003+00:002014-02-20T11:00:14.474+00:00Same old same old: are supervisory bodies actually reading s39D?<div dir="ltr" style="text-align: left;" trbidi="on">
We are now into the fifth year of the DOLS, and it seems that a third of supervisory bodies may not yet have read and digested <a href="http://www.legislation.gov.uk/ukpga/2005/9/section/39D">s39D Mental Capacity Act 2005</a>. Let me spell it out, literally. Supervisory bodies MUST make a referral to an Independent Mental Capacity Advocate (IMCA) under s39D where a person has an unpaid representative and <i>either </i>the detainee or the representative requests one <i>or </i>(and this is the important bit) the supervisory body has reason to believe one or more of the following:<br />
<ul style="text-align: left;">
<li>(a) that, without the help of an advocate, P and R would be unable to exercise one or both of the relevant rights;</li>
<li>(b) that P and R have each failed to exercise a relevant right when it would have been reasonable to exercise it;</li>
<li>(c) that P and R are each unlikely to exercise a relevant right when it would be reasonable to exercise it.</li>
</ul>
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The Department of Health has published its <a href="https://www.gov.uk/government/publications/independent-mental-capacity-advocacy-service-sixth-annual-report">Sixth report on the IMCA service (2012-13)</a>. As is traditional, I put the data on the number of IMCA referrals under s39D for each local authority into a spreadsheet and matched it up with the number of authorisations that local authority had made under the DoLS. This doesn't even take into account authorisations in relation to hospitals, and still the situation is dire. Out of 146 local authorities for whom I had data*, a whopping 46 had <i>not made a single referral under s39D</i>. Some of these had as many as 263 authorisations. A local authority with 305 authorisations had made one s39D referral.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj60i6dOMoKFp6UmLXuQwiOCHnQsbCe6ZAf1WXg4_ZQnLmKa9_Pae0os53B_bL0vcEmxYeeq2Ss-JM_ngMBXK6Cw4ESKxzVjkUf-rto1FkcbWABJJZR3J20BkdK3b5Fc1-YonbJL9WYDHw/s1600/Authorisations+and+s39D+referrals+2012-13.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj60i6dOMoKFp6UmLXuQwiOCHnQsbCe6ZAf1WXg4_ZQnLmKa9_Pae0os53B_bL0vcEmxYeeq2Ss-JM_ngMBXK6Cw4ESKxzVjkUf-rto1FkcbWABJJZR3J20BkdK3b5Fc1-YonbJL9WYDHw/s1600/Authorisations+and+s39D+referrals+2012-13.jpg" height="468" width="640" /></a></div>
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I ask you: do the supervisory bodies in these areas seriously believe that the people they are detaining under the DoLS could appeal to the Court of Protection without assistance from an IMCA? <i>Really</i>? They think that the detainee lacks the capacity to decide where they should be accommodated, but they would understand the finer details of the DoLS and how to initiate a case in the Court of Protection? As <a href="http://talesfromserviceland.blogspot.co.uk/2013/11/theres-another-rabbit-off.html">Tim Keilty would put it</a>, there's a rabbit off somewhere...<br />
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I've gone on <i>ad nauseam </i>about the importance of s39D IMCAs to ensuring that people's Article 5(4) rights to 'take proceedings by which the lawfulness of his detention shall be decided speedily by a court and his release ordered if the detention is not lawful'. This contention is reinforced by the finding in <a href="http://www.bailii.org/ew/cases/EWHC/COP/2011/1377.html"><i>Neary v LB Hillingdon</i> </a>that failure to make a timely s39D referral contributed to a violation of Stephen Neary's Article 5(4) rights, and the reminder that the state must 'ensure that a person deprived of liberty is not only entitled but enabled to have the lawfulness of his detention reviewed speedily by a court.' This proactive duty to ensure a person has the assistance they need to challenge their detention before a court is reinforced by the recent ruling in <a href="http://www.bailii.org/eu/cases/ECHR/2013/1008.html">MH v UK </a>(discussed <a href="http://thesmallplaces.blogspot.com/2013/10/mh-v-uk-implications-for-deprivation-of.html">here</a>).<br />
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I suspect that (some) supervisory bodies are picking and choosing which bits of s39D they are applying. Perhaps they offer a person an IMCA, or write them a letter telling them that they are entitled to one, and then make a referral if they request one. But <i>this isn't all that the statute requires</i>. The statute requires that the supervisory body make their own assessment of whether P and R are able to exercise the relevant rights (ie. to request a review or take the case to the Court of Protection) without the assistance of an IMCA. It should be obvious really that a person who struggles to understand their rights (and thus needs an IMCA) will struggle to understand what an IMCA does and make a request when appropriate. Relying on people to request an IMCA is basically expecting people to self-assess their understanding of the DoLS.<br />
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There is also an overarching duty upon supervisory bodies (under the Human Rights Act 1998) to exercise their discretion to make an IMCA referral in accordance with Article 5(4). I would interpret that to mean that if you've got a scenario where P is objecting to his detention but the unpaid representative isn't, you've got a duty to ensure that P has the assistance he needs to challenge his detention without the representative's help. You could either appoint a paid representative who <i>will </i>help him to appeal (<a href="http://www.bailii.org/ew/cases/EWHC/COP/2011/727.html">as in this case</a>), or you could make a referral under s39D to an IMCA who is legally obliged to help him to appeal (s39D(8)). That doesn't mean the IMCA themselves has to apply to Court, they just have to make sure that P has the resources he needs (ie. a solicitor who knows about DoLS) to do so.<br />
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I don't know what the answer to this problem is. We've come across it year upon year upon year. Perhaps the Department of Health should issue a circular to local authorities reminding them of what s39D actually says, and reiterating the message of <i>MH v UK</i>. Perhaps CQC should make contact with supervisory bodies with very low rates of 39D referral and ask them what's going on. Perhaps the Local Government Association should flag it up. Perhaps IMCA providers who haven't received many (or any) s39D referrals should take steps to remind their local supervisory bodies of what s39D actually says. Perhaps ADASS could send out a letter to directors of adult social services reminding them to ensure that detainee's Article 5(4) rights are actually being protected in the way the statute envisioned. There are steps that could be taken to improve this, I hope somebody does.<br />
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*Some didn't return data, and some appear to be jointly commissioning IMCAs, so you can't look at their individual referral pattern.</div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-52725357490335564442014-02-17T11:24:00.001+00:002014-02-17T14:33:31.369+00:00Against "mental age"<div dir="ltr" style="text-align: left;" trbidi="on">
Why do so many judgments from the Court of Protection use 'mental age' to describe people with learning disabilities? I've lost count of the number of judgments where this is used. Presumably it's occurring because at some point an expert psychologist or psychiatrist has used the term in a report, but I really wish they wouldn't. <br />
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I remember learning about 'mental age' when I was an undergraduate studying psychology. It's a concept derived from certain kinds of psychometric tests. In the early twentieth century two psychologists - Alfred Binet and Theodore Simon - developed tests of children's verbal abilities to identify 'mental retardation', often for the purpose of diverting these children away from mainstream education. It's origins were in creating a 'scientific' measure to justify exclusion from mainstream society.<br />
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Simon and Binet calculated mental age by working out the 'normal' performance of children of different ages on various tests they had devised; a child's 'mental age' was determined by which age group their performance on these tests most closely resembled. Simon and Binet's tests were an early form of Intelligence Quotient (IQ) testing, and a person's 'mental age' in fact has an arithmetically equivalent IQ score. If a child's mental age' is the same as their chronological age, then their IQ score is 100 - the average score. Because 'mental age' is calculated from IQ scores, the concept attracts <a href="http://en.wikipedia.org/wiki/Iq_tests#Criticism_and_views">all the criticisms of IQ testing in general</a>.<br />
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Later on when I was an assistant psychologist working in neuropsychology I would be asked to administer psychometric tests, including IQ tests. I used to hate doing this, reducing a person to a set of scores; it's one of the reasons I left working in psychology. The tests we used asked some questions which were clearly culture-bound (I remember asking one young woman if she knew who Cleopatra was, she replied that they were an R&B girl group known for the hit song <i>Comin' Atcha!</i> - which is, strictly speaking, correct, but scored no points on the test). Working in neuropsychology, I administered these tests to people with a wide range of possible conditions - from brain injuries, possible dementias, mental health problems. I was only asked to calculate 'mental age' for a person with a learning disability. <br />
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I hate 'mental age'. It's arithmetically redundant - we don't need to use it - but we do. The British Psychological Society (BPS) <a href="http://www.bps.org.uk/system/files/documents/ppb_learning.pdf">issued guidance in 2000</a> which says:<br />
<blockquote class="tr_bq">
'In practice, some clinicians are known to use child development scales or children’s intelligence tests to profile aspects of intellectual functioning of very disabled adults. Whilst, clinically, this may have some use in assessing performance on specific tasks, attempts to derive extrapolated IQ scores from the use of developmental scales or child intelligence tests constitutes extremely dubious practice and is not recommended. Likewise, the practice of referring to ‘mental age’ when reporting on the level of intellectual or social functioning of adults should be avoided.'</blockquote>
I think mental age feeds a perception that people with learning disabilities are like children. These infantilising discourses are not only offensive, I think they are also dangerous. They risk leading us to the view that people with learning disabilities should be <i>treated like children</i>. Should be accorded similar legal rights to children. <br />
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Look at how readily analogies with children were used to justify the judgment that the meaning of liberty was <i>different </i>for 'people like that' in <a href="http://www.bailii.org/ew/cases/EWCA/Civ/2011/1257.html" style="font-style: italic;">Cheshire West</a>: 'one could just as well argue that a small child, because he has to live where his parents determine, is deprived of his liberty if, as a baby, he is strapped into a buggy or, as an older child, is strapped into a car seat'. The judgment meant that people with intellectual and cognitive disabilities could be subject to far higher levels of restrictions than people without those disabilities before they were entitled to legal safeguards against arbitrary detention. Lawyers and philosophers defending the judgment in <a href="http://www.1cor.com/seminar/Dignity--Death-and-Deprivation-of-Liberty--Human-Rights-in-the-Court-of-Protection">a seminar at One Crown Office Row </a>readily slipped into analogies with children. As the Official Solicitor retorted from the audience: 'one can be flippant about little children if one wants, but these aren’t children, they’re adults.'<br />
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Here is what Katherine Quarmby had to say about the use of 'mental age' metrics in her <a href="http://www.scope.org.uk/sites/default/files/pdfs/Campaigns_policy/Scope_Hate_Crime_Report.pdf">seminal report on disability hate crime</a> for Scope:<br />
<blockquote class="tr_bq">
This problem of language extends beyond vulnerability. The term ‘bullying’, is often used, with the best of intentions, by organisations working with people with learning difficulties to help them understand that they are being wrongly targeted and to seek redress. This is then reflected in media reporting, where reporters will often describe people with learning difficulties as “having the mental age of a child”. Such language encourages the infantilisation of disabled victims of crime within the criminal justice system and masks the gravity of their experiences. It can lead to front-line police officers, faced with a victim saying that they are being ‘bullied’, failing to take a crime seriously and then record or investigate it appropriately. </blockquote>
Infantilising people with learning disabilities can lead to the normalisation of criminal offences against them which would be taken seriously for other members of the population.<br />
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And if 'mental age' diminishes the importance of liberty and personal security for people with learning disabilities, it's just downright creepy in the context of decisions about sex and capacity. As Jonathan Herring wrote in his essay for the <a href="http://www.hartpub.co.uk/books/details.asp?isbn=9781849460538">Feminist Judgments Project</a>, presenting E in <a href="http://www.bailii.org/ew/cases/EWHC/Fam/2004/2808.html">Sheffield City Council v E (2004)</a> as functioning at the mental age of a thirteen year old 'automatically creates suggestions of paedophilia' and 'involves infantilising E and reducing the weight that is attached to her views, and it affects the assessment of her capacity'.<br />
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Do these 'mental age' metrics impact upon the assessment of capacity? This is what Hedley J said about mental age in <a href="http://www.mentalhealthlaw.co.uk/LB_Haringey_v_FG_(No._1)_(2011)_EWHC_3932_(COP)">LB Haringey v FG</a>:<br />
<blockquote class="tr_bq">
It is of course not open to a court to say that because someone functions at a chronological age of seven, and because no one would dream of ascribing capacity to a seven-year-old, therefore you do not ascribe capacity to the person in question; it is a more subtle process than that. However by the same token it is essential to retain that piece of information as an important guide in the assessment of capacity.</blockquote>
It would be wrong to caricature the Court as straightforwardly treating a person as if they were a child on the basis of mental age, but it certainly seems to occupy some place in the imagination.<br />
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There is a lot more to being older than improving one's IQ scores. One accumulates life experiences, responsibilities, desires and outlooks which are influenced by a range of developmental, social and generational factors. If you are determined to use impoverished IQ metrics to describe a person's 'intellectual functioning', then use IQ - at least that conveys what is actually being tested: a person's ability to solve a few puzzles and know who wrote Hamlet. There is no need whatsoever to use 'mental age' to describe the functioning of adults in psychometric tests; if you are doing so, ask yourself why? Why do you want to feed a perception that the adults you are working with are children, and does this influence how you and others value their legal capacity, liberty, sexuality and their other legal rights?</div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-91156298966714247272014-02-14T16:14:00.001+00:002014-02-19T15:03:56.149+00:00A message from Hammersmith and Fulham<div dir="ltr" style="text-align: left;" trbidi="on">
A few weeks ago I posted <a href="http://thesmallplaces.blogspot.co.uk/2014/01/a-message-from-pembrokeshire.html">A message from Pembrokeshire</a>; a transcript of the evidence submitted by Pembrokeshire People First to the <a href="http://www.parliament.uk/business/committees/committees-a-z/lords-select/mental-capacity-act-2005/">House of Lords Select Committee on the Mental Capacity Act 2005</a>. I posted their evidence in full because it was (I think) the only evidence submitted to the Committee from a self-advocacy organisation about the MCA. As I wrote at the time, whilst there is a huge amount of research on the views of carers, social workers, doctors, lawyers and others on the MCA, there is a (shocking) dearth of evidence on the views of people with cognitive and intellectual disabilities and mental health problems on having their capacity assessed and having decisions made on their behalf. The only study I have been able to find which has looked at this was conducted by the <a href="http://fra.europa.eu/en/publication/2013/legal-capacity-persons-intellectual-disabilities-and-persons-mental-health-problems">European Union Agency for Fundamental Rights</a>; this only touched on the UK very briefly, but did not present an especially positive picture of people's experiences of having decisions made in their 'best interests'.<br />
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However, the House of Lords Select Committee - specifically Lord Faulks, Lord Hardie and Baroness Barker - went to meet people with learning disabilities in Hammersmith and Fulham to ask them about their experiences of making decisions, being supported to make decisions, being prevented from making decisions and being sidelined in decision making. The <a href="http://www.parliament.uk/documents/Mental-Capacity-Act-2005/NoteoftheCommitteevisittomeetlearningdisabledadults-webversion.pdf">notes of their visit </a> are really interesting. They offer a real insight into the range of experiences that people with learning disabilities have of being supported (or not supported) to make decisions, and of being involved (or not involved) when others make decisions for them. As it's quite long, I won't summarise it here - but I really recommend reading it. </div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-9189671177221615602014-02-11T11:57:00.001+00:002014-02-11T11:57:18.950+00:00Discharges from detention by the Tribunal under the Mental Health Act 1983<div dir="ltr" style="text-align: left;" trbidi="on">
The Care Quality Commission's <a href="http://www.cqc.org.uk/public/news/taking-action-improve-mental-health-services">annual report on the Mental Health Act 1983</a> (MHA) contains data on applications to, and discharges by, the First Tier Tribunal (Mental Health). The Tribunal has powers under the MHA to confer an absolute discharge, delayed discharge or (in some cases) conditional discharges on detained patients.<br />
<br />
I was looking at these data and wondering if the rates of discharge by the Tribunal vary for different types of applicant. It turned out that they do - restricted patients are most likely to be discharged, followed by patients detained under s2 MHA whilst unrestricted patients detained under other parts of the MHA were the least likely to be discharged. <br />
<br />
I have recently been learning to use two new (open source) software packages: <a href="http://www.r-project.org/">R for statistics</a> and <a href="http://www.inkscape.org/en/">Inkscape</a> (a vector based graphics program). I am learning these because I want more flexibility in presenting data than Excel or SPSS can give me. I was practising with these packages on the MHA Tribunal data and made this chart, based on a 'recipe' from a book called <a href="http://www.amazon.co.uk/Visualize-This-FlowingData-Visualization-Statistics-ebook/dp/B005CCT19M/ref=sr_1_1?ie=UTF8&qid=1392117077&sr=8-1&keywords=visualise+this+nathan"><i>Visualise This</i></a>. I'm not sure if it's helpful to anyone, but I thought I'd share it anyway, and I've put it on a power point slide <a href="https://dl.dropboxusercontent.com/u/4397081/blog/Discharges%20by%20Tribunal%20under%20MHA%202012-13.pptx">here</a> in case you want to use it. Pie charts should be avoided when you have a large number of variables. but I wanted to use them here because I can convey the number of people the Tribunal made discharge or no-discharge decisions for using the area, and the proportion of people discharged by the Tribunal by the angle of the slice of pie.<br />
<br />
<iframe height="780" src="http://docs.google.com/viewer?url=https%3A%2F%2Fdl.dropboxusercontent.com%2Fu%2F4397081%2Fblog%2FDischarges%2520by%2520Tribunal%2520under%2520MHA%25202012-13.pdf&embedded=true" style="border: none;" width="600"></iframe><br />
<br />
As an aside, the data from CQC on Tribunals don't quite add up to 100%. The number of hearings is greater than the total number of 'discharge' and 'no discharge', presumably because some hearings did not result in a decision either way. I also haven't included the number of people who applied for a Tribunal hearing but either withdrew their application or were discharged prior to the hearing.</div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com16tag:blogger.com,1999:blog-7327718065135964598.post-16835211521757872312014-02-02T20:01:00.002+00:002014-02-02T20:01:59.976+00:00Does the public oppose 'euthanasia', or a loss of autonomy in end of life care?<div dir="ltr" style="text-align: left;" trbidi="on">
ComRes has recently <a href="http://www.comres.co.uk/poll/1084/alert-mental-capacity-act-survey.htm">published a poll </a>commissioned by the anti-euthanasia organisation <a href="http://www.alertuk.org/">Alert</a>, ostensibly about the Mental Capacity Act 2005, but in fact about a very specific category of end of life decisions, concerning the withdrawal of hydration. The survey asked two related questions:<br />
<div style="text-align: left;">
</div>
<blockquote class="tr_bq">
Q1. Under the Mental Capacity Act, doctors can allow people who cannot communicate for themselves to die of dehydration, if they think that it is in the patient's “best interests” and if they believe their death to be approaching soon. Would you support or oppose a change in the law to prevent this from happening... <u>If the patient has asked to be given water if necessary through a tube in advance of them losing their ability to communicate?</u></blockquote>
They found that 58% of people supported a change in the law, that only 17% opposed it and 25% of people responded 'don't know'. The percentage of people supporting a change in the law increased with age. This headline finding was <a href="http://www.christiantoday.com/article/euthanasia.by.dehydration.lacks.public.support/35634.htm">reported in Christian Today</a> as 'Euthanasia by dehydration lacks public support'. <br />
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<br /></div>
<div style="text-align: left;">
But ComRes asked another question about withdrawing hydration, which had rather different results:</div>
<div style="text-align: left;">
</div>
<blockquote class="tr_bq">
Q2 Under the Mental Capacity Act, doctors can allow people who cannot communicate for themselves to die of dehydration, if they think that it is in the patient's “best interests” and if they believe their death to be approaching soon. Would you support or oppose a change in the law to prevent this from happening... <u>If there had been no mention about whether water should be provided or not, in advance of them losing their ability to communicate?</u></blockquote>
<br />
In response to this question, the number of people supporting a change to the law which permits the withdrawal of hydration from a person approaching the end of their life fell by almost half, to 33%. The number of people opposing a change in the law rose to 28%, and the number of people who responded that they didn't know increased to 39% (the largest category).<br />
<br />
The crucial difference between the two polls is whether decisions around the withdrawal of hydration respect a person's previously expressed wishes. In the first poll, there was public opposition to the withdrawal of hydration where a person has specifically said that they would want to be given water in these circumstances, but this opposition to the withdrawal of hydration dramatically decreased where a person's wishes were unknown. <br />
<br />
So <i>did </i>ComRes find opposition to euthanasia in their poll? It looks, to me, like what the poll actually found was public support for an approach to end of life decisions which was founded on a person's previously expressed views, rather than 'objective' best interests. People can make 'advance decisions' <i>refusing</i> treatment for future loss of capacity - and many people do make advance decisions refusing life sustaining treatment. But there is a long line of legal authorities - from <a href="http://www.bailii.org/ew/cases/EWCA/Civ/2005/1003.html">Lesley Burke </a>through to <a href="http://www.bailii.org/uk/cases/UKSC/2013/67.html">David James' </a>cases - finding that people cannot <i>request to be given </i>particular treatments. And whilst their past expressed preference for treatment is one factor that would be taken into consideration, it could still be trumped by other 'objective' factors in a best interests decision. I'm not sure that ComRes <i>did </i>find opposition to euthanasia <i>per se</i>, so much as opposition to a state of affairs where a person's past expressed wish to be tube fed water in end of life care can be overridden.</div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com3tag:blogger.com,1999:blog-7327718065135964598.post-86931659887238813762014-01-24T14:27:00.004+00:002014-01-27T10:59:11.117+00:00Framing the test of capacity to consent to sex<div dir="ltr" style="text-align: left;" trbidi="on">
The Court of Appeal has just handed down a very important judgment on the nature of the capacity to consent to sex. In <a href="http://www.bailii.org/ew/cases/EWCA/Civ/2014/37.html">IM v LM</a> it considered issues which have been debated back and forth between different judges in the criminal and civil courts since before the Mental Capacity Act 2005 (MCA) came into force. Two of the key issues which different judges seemed to disagree over were:<br />
<br />
<ol style="text-align: left;">
<li>Is the 'test' of capacity to consent to sex 'issue specific' (ie. is the test just about sex <i>in general</i>) or 'person and situation specific' (ie. are there issues around sex with this particular person, at this place and time, <i>as well</i>)?</li>
<li>Does the test of capacity to consent to sex involve merely a need to 'understand' the information, or also an ability to 'use and weigh' the information?</li>
</ol>
These might sound like rather dry issues, but in fact they go right to heart of fundamental questions about liberty, privacy, autonomy and power in the sexual relationships and in the lives of people with cognitive and intellectual disabilities.<br />
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<a name='more'></a><br />
The reason why these questions are so pivotal, is because if a person with an intellectual or cognitive disability is found to 'lack the capacity to consent to sex', a lot of consequences flow from this. Nobody can consent to sex on behalf of a person who has been found to lack capacity in their best interests (s27 MCA). In addition, sexual activity with 'a person with a mental disorder impeding choice' is a criminal offence under the Sexual Offences Act 2003. For some time now, an implicit assumption behind many acts of public authorities, care providers and the Court of Protection has been that if a person lacks capacity to consent to sex, they must be <i>prevented from having sex</i>, because to do otherwise would be to allow them to become a victim of a criminal sex offence. <br />
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In <i>IM v LM</i>, the Court of Appeal summed it up by saying:<br />
<blockquote class="tr_bq">
...if, in any case, there is a declaration of lack of capacity, the relevant local authority must undertake the very closest supervision of that individual to ensure, to such extent as is possible, that the opportunity for sexual relations is removed.</blockquote>
See, for example, a recent ruling by the Court of Protection, that visits between a husband and wife must be supervised to prevent sexual activity (<a href="http://www.bailii.org/ew/cases/EWHC/COP/2013/2373.html">Sandwell Metropolitan Borough Council v RG</a>). In earlier cases, such as <a href="http://www.bailii.org/ew/cases/EWHC/COP/2011/101.html">D Borough Council v AB</a> and <a href="http://www.mentalhealthlaw.co.uk/Re_H;_A_Local_Authority_v_H_(2012)_EWHC_49_(COP),_(2012)_MHLO_3">A Local Authority v H</a>, restrictions imposed to stop a person from having sex were said to amount to a deprivation of liberty - although this issue was not discussed by the Court of Appeal in respect of LM. It's worth pausing for a minute to consider how topsy turvy this seems from a distance: a person is being preventively detained to stop them from becoming a <i>victim </i>of crime. And this isn't any ordinary detention - people will be subject to a level of supervision that most prisoners and mental health detainees would not be subject to, to ensure they do not engage in sexual activity with those around them.<br />
<br />
Because such drastic consequences flow from a finding that a person lacks the capacity to consent to sex, and because this is such as social and political hot potato, there has been considerable focus on the 'test' of capacity to consent to sex. There is probably more case law on this particular test of capacity than any other. This close scrutiny of the test of capacity to consent to sex highlights what is actually a wider issue around the supposedly neutral and objective 'mental capacity' approach embodied by the MCA: you can arrive at a particular outcome (which has drastic consequences for liberty and autonomy) by framing the test in a particular way. <br />
<br />
<b>'Issue specific' or 'person and situation specific' capacity?</b><br />
<b><br /></b>
If the test of capacity to consent to sex is 'issue specific', then a person can be regarded as having the capacity to consent to sex provided they can demonstrate understanding of some general issues around sex. So, for example, Mostyn J felt that the following list was sufficient in <i>D Borough Council v AB</i>:<br />
<ol style="text-align: left;">
<li>The mechanics of the act</li>
<li>That there are health risks involved, particularly the acquisition of sexually transmitted and sexually transmissible infections</li>
<li>That sex between a man and a woman may result in the woman becoming pregnant. [42]</li>
</ol>
The third requirement not being relevant where the sex was not heterosexual sex (and perhaps similar considerations might apply if the person in question was not able to become pregnant or father a child?). This was regarded as quite a low bar, although 'Alan' (Mostyn J is a fan of adopting names rather than initials, <a href="http://www.bailii.org/ew/cases/EWHC/COP/2012/3531.html">deeming it less dehumanising</a>) failed that test because of his lack of understanding of the health risks - ' he thought that sex could give you spots or measles'. Mostyn J directed that he should have sex education to remedy this, in order that he would be able to gain capacity and possibly regain his liberty. Again, it's worth just pausing here and asking ourselves: if the consequence of failing this test is deprivation of liberty, are we happy that a person seems to have been detained in this case because they thought that sex gives you spots and measles? How many Sexually Transmitted Diseases (STDs) must you be able to list before you <i>have </i>capacity, and how many people without disabilities would pass this test? The MCA requires the test is fleshed out <i>somehow</i>, but it's very hard to do so in a way that avoids looking absurd.<br />
<div>
<br /></div>
<div>
In a later case, <i>A Local Authority v H</i>, Hedley J declined to formulate a test incorporating 'moral' and 'emotional' understanding, but did add one further requirement:<br />
<blockquote class="tr_bq">
...does the person whose capacity is in question understand that they do have a choice and that they can refuse? That seems to me an important aspect of capacity and is as far as it is really possible to go over and above an understanding of the physical component. [25]</blockquote>
Thankfully, <a href="http://www.bailii.org/ew/cases/EWHC/Fam/2010/1549.html">in the context of consent to contraception</a>, the courts had vehemently rejected the proposal that a person should understand not merely the risk of pregnancy, but the social and emotional consequences of that pregnancy (including the possibility that a person's children might be removed from their care).<br />
<br />
A point I'd like to mention in passing is that even these 'low threshold' tests seem to rely quite heavily upon a person having some verbal abilities, especially to be able to articulate the health risks. In the past I have lived with people with intellectual disabilities who have had sexual relationships and yet had little to no verbal abilities. Their relationships were loving, tender, entered into voluntarily and brought them great joy and happiness. They enjoyed considerable freedom in their everyday lives, because nobody was trying to stop them from having sex. At the time the MCA had not quite come into force, and although the common law would have been pretty similar nobody in my neck of the woods asked questions about 'capacity' and they were left in peace, with some contraception. I find it very sad to think that if this test were imposed on them, not only would they be prevented from having sex, they would also be subject to a regime of supervision which would destroy the ethos of the environment they lived in.<br />
<br />
To return to the issues, the question of <i>person-specific</i> or <i>situation-specific </i>capacity first arose in the criminal sphere. The facts of <a href="http://www.bailii.org/uk/cases/UKHL/2009/42.html">R v C (2009)</a> make very disturbing reading, and you can really see why the court leaned towards adding further elements to the test of capacity. In that case, the complainant was a woman of 28 years old who had various diagnoses - including mental health problems and mild intellectual disabilities. She had been detained under the Mental Health Act 1983 several times, had recently been discharged but on the morning of the offence a doctor had in fact completed a form recommending compulsory admission to hospital, which had not been executed. Later that day she met 'C', and she told him that she had been in hospital for nine years and had recently left. She said that people were after her and he offered to help:<br />
<blockquote class="tr_bq">
She went with him to his friend’s house. He sold her mobile telephone and bicycle and gave her crack. She went to the bathroom but the defendant came in and asked her to give him a “blow job". Her evidence was that she was really panicky and afraid and wanted to get out of there. She was saying to herself “these crack heads . . . they do worse to you". She did not want to die so she just stayed there and just took it all. [18]</blockquote>
Lady Hale went on to say that:<br />
<blockquote class="tr_bq">
The complainant here, even in her agitated and aroused state, might have been quite capable of deciding whether or not to have sexual intercourse with a person who had not put her in the vulnerable and terrifying situation in which she found herself on 27 June 2007. The question is whether, in the state that she was in that day, she was capable of choosing whether to agree to the touching demanded of her by the defendant. [26]</blockquote>
So the question here was not whether the complainant could <i>ever </i>consent to sex - it was whether <i>on this occasion, with this person</i> she had the capacity to refuse consent.<br />
<br />
Before returning to the Court of Appeal's decision in <i>IM v LM</i>, I just want to highlight that even people arguing from a disability rights perspective for a less capacity-focussed approach to consent to sex have argued for an approach which takes into account the specifics of a relationship and a particular situation. The Centre for Disability Law and Policy at NUI Galway wrote <a href="http://www.nuigalway.ie/cdlp/documents/annas_website_piece.pdf">an interesting submission to the Irish Law Reform Commission</a>, which advocated a <i>general test</i> (ie. not just one which applied to people with disabilities) which took into account various factors when evaluating consent to sex, including that:<br />
<blockquote>
There needs to be a reasonable degree of equality between the parties, so that both parties have sufficient power to make the choice to engage or not engage in sex, without fear of adverse consequences.</blockquote>
This was based on approach outlined by McCarthy and Thompson in a great chapter in a book called <a href="http://www.ashgate.com/isbn/9780754636878">Making Sense of Sexual Consent</a>. I think a lot of feminists would also endorse an approach which took into account the dynamics of a relationship when considering whether consent to sex was valid.<br />
<br />
Although in general such a disability-neutral approach might be desirable, the problem with a more expansive test in the English and Welsh context is that it adds yet more hurdles which a person must jump in order to pass the test of consent to sex, and remain free of the consequences for liberty and privacy which ensue if a person is said to lack capacity in that regard. A person must be able to demonstrate not only that they understand the mechanics of the act etc, but also that they are able to make a choice in that particular context with that particular person. This requires a <i>yet more </i>invasive inquiry into their understanding and evaluative capacities, and an enquiry which must be renewed upon each new relationship they embark upon. <br />
<br />
The Court of Appeal were very aware of this tension in <i>IM v LM</i>, and came up with a novel solution, which had the effect of finding that (almost) all the judges were correct: the test that should be applied differs in civil and criminal contexts. In a criminal context, the issue is a specific incident, and so the approach should be focussed on a person's situational and person-specific capacity. This was referred to as the 'exercise of capacity'. In a civil context, in the Court of Protection (and the application of the MCA in everyday care decisions), the test should be 'general' - not person or situation specific. This framing of the test of capacity in a civil context was very explicitly pragmatic:<br />
<blockquote class="tr_bq">
77. Going further, we accept the submission made to us to the effect that it would be totally unworkable for a local authority or the Court of Protection to conduct an assessment every time an individual over whom there was doubt about his or her capacity to consent to sexual relations showed signs of immediate interest in experiencing a sexual encounter with another person. On a pragmatic basis, if for no other reason, capacity to consent to future sexual relations can only be assessed on a general and non-specific basis.</blockquote>
This echoed a comment made by Baker J in <a href="http://www.bailii.org/ew/cases/EWHC/COP/2013/2322.html">A Local Authority v TZ</a>:<br />
<blockquote class="tr_bq">
'To require the issue of capacity to be considered in respect of every person with whom TZ contemplated sexual relations would not only be impracticable but would also constitute a great intrusion into his private life."'</blockquote>
The Court of Appeal's judgment does raise the possibility that a person might be found to have the capacity to consent to sex in general, and so be free of a regime of supervision to prevent them from having sex, and yet become a victim of crime if a particular person disturbs their ability to give or refuse consent to sex. My guess is that this might be managed in some cases by the 'capacity to consent to contact', which is a whole other debate about person-specificity. In the context of the law as it stands, the Court of Appeal's decision is probably the most liberal solution that can be arrived at, but as I mentioned above, some people will still fall afoul of this low threshold. I also think it's a valid question why we need a specific offence of sex with a person with a mental disorder impeding choice, rather than a general offence of sex under undue influence or pressure. I'm not a criminal lawyer though, so I won't delve any further into that one.<br />
<br />
<b>Do you need to 'use and weigh' the information, or merely understand it, in order to consent to sex?</b><br />
<b><br /></b>
The other area where <i>R v C</i> had appeared to depart from the approach taken in (some of the) Court of Protection cases was the extent to which a person had to be able to 'use and weigh' the information relevant to the decision, or merely understand it. The Court of Appeal thought that in <i>R v C </i>Lady Hale had understood Munby LJ to say that the capacity to consent to sex only required understanding and not using and weighing information as well. The <a href="http://www.legislation.gov.uk/ukpga/2005/9/section/3">test of capacity formulated under the MCA </a>very clearly <i>does </i>incorporate the requirement that a person is not only able to understand information but also to 'use or weigh'* it:<br />
<blockquote class="tr_bq">
...a person is unable to make a decision for himself if he is unable—<br />
(a) to understand the information relevant to the decision,<br />
(b) to retain that information,<br />
(c) to use or weigh that information as part of the process of making the decision, or<br />
(d) to communicate his decision (whether by talking, using sign language or any other means).</blockquote>
The Court of Appeal confirmed that a person must be able to satisfy all elements of the test, but they suggested that what Munby LJ had meant was not that sex was different in not requiring a person to 'use or weigh', but that sex was different in respect of the <i>extent of judicial inquiry </i>into whether they could use or weigh. <br />
<br />
The Court of Appeal took an approach quite similar to that of Baker J in TZ, which considered how people <i>ordinarily </i>went about making decisions about sex and took care not to impose a higher standard on people with disabilities. In TZ, Baker J had said:<br />
<blockquote class="tr_bq">
'Most people faced with the decision whether or not to have sex do not embark on a process of weighing up complex, abstract or hypothetical information....There is a danger that the imposition of a higher standard for capacity may discriminate against people with a mental impairment.' [55]</blockquote>
The Court of Appeal in <i>IM v LM</i> said: 'the notional decision-making process attributed to the protected person with regard to consent to sexual relations should not become divorced from the actual decision-making process carried out in that regard on a daily basis by persons of full capacity.' That ordinary decision making process was ' largely visceral rather than cerebral, owing more to instinct and emotion than to analysis' [80]. For this reason, the Court of Appeal felt, 'the ability to use and weigh information is unlikely to loom large in the evaluation of capacity to consent to sexual relations' [81]. It was not an 'irrelevant consideration', but 'should not involve a refined analysis of the sort which does not typically inform the decision to consent to sexual relations made by a person of full capacity' [81]. They endorsed Hedley J's view, <a href="http://mentalhealthlaw.co.uk/Re_P_(abortion)_(2013)_EWHC_50_(COP),_(2013)_MHLO_1">expressed elsewhere</a>, that the purpose of the MCA 'is not to dress an incapacitous person in forensic cotton wool but to allow them as far as possible to make the same mistakes that all other human beings are at liberty to make and not infrequently do".' They issued a general caution against the temptation to expand the test of capacity to consent to sex to include more information, describing it as paternalistic and 'a derogation from personal autonomy' [82].<br />
<br />
<b>General comments</b><br />
<b><br /></b>
At the very least, this case offers greater clarity in what has become a very frustrating back and forth where the courts were unable to conclusively agree upon what the 'capacity to consent to sex' consists in. That said, precisely <i>what </i>must be understood is not determined in this case, and there may be ongoing argument there. One feels that the Court of Appeal have done the best they could within the current law to carve out a space for people with intellectual disabilities and cognitive impairments to be free to experience sexual relationships - including making mistakes, and sometimes mistakes with painful and longstanding consequences - as other people do. It's interesting to see that the Court of Appeal - like Baker J in his earlier judgment - has taken an approach which contrasts the expectations heaped upon people with disabilities to demonstrate the capacity to consent to sex, with the messy and emotional and instinctive reality of such decisions in other people's lives. <br />
<br />
In many ways this is a positive development, but it still creates some difficulties. In particular, it still forces the lower courts (and those on the ground who implement the MCA) to formulate precisely <i>what </i>must be understood in order to demonstrate 'ordinary' capacity. I think there is still a danger that people with some disabilities will end up having to jump through hoops that others do not - I bet there are plenty of 16 year olds, and quite possibly those who haven't had sex education, who could not tell you with any degree of accuracy the health risks connected with sex. And as I noted above, it's a standard which some people may never be able to meet, even if they would be capable of enjoying loving and voluntary sexual relationships. At the same time, people with intellectual disabilities are often at risk of sexual exploitation (no less in institutions than elsewhere), and it's not clear that being able to to say that sex risks giving you herpes, say, instead of measles, offers much protection in that regard. I think what's really happening is that the MCA's use to protect in this area is increasingly limited, and those who support people with intellectual and cognitive disabilities will have to find more consensual ways of helping to reduce risks of exploitation.<br />
<br />
Another interesting characteristic of the Court of Appeal's ruling is that the test of capacity is very much framed with its consequences in mind; a kind of meta-outcome approach. Within the logic of the MCA, the separation of civil and criminal standards seems to me to be a more workable balance between taking action against targeted sexual exploitation of people with disabilities and giving people greater freedom. It's reminiscent of an approach suggested by Peter Bartlett in a very worthwhile paper on <a href="http://eprints.nottingham.ac.uk/1440/">Sex, dementia, capacity and care homes</a>, which suggests that sexual exploitation should be tackled through prosecutorial discretion. <br />
<br />
The question of whether there should be a 'general test' which applies to everyone is still one I think we need to confront. And when we do, I think we also need to consider what flows from that test not being met. On the current approach under the MCA, what flows is - as Hedley J and the Court of Appeal put it - 'forensic cotton wool'. If a more expansive general test is adopted, would that mean more 'forensic cotton wool' for <i>everyone</i>, or is what is actually needed an entirely different approach to protecting people (including people with disabilities) from sexual exploitation? I wonder if the whole 'test' mentality is flawed, and actually what we are all concerned about is <i>power</i>, and power across all kinds of vulnerable situations - not just those that people with disabilities might experience<i>. </i>What such an approach would look like, I don't know, but it's certainly a question that needs to be considered in the context of questions posed by the UN Convention on the Rights of Persons with Disabilities.<br />
<br />
<br />
*As an aside, the test as formulated in the MCA says that a person must be able to "use OR weigh", not "use AND weigh" information. As the <a href="http://autonomy.essex.ac.uk/">EAP philosophers </a>have pointed out in many of their events, this is potentially important as a person could be able to 'use' and not 'weigh', or 'weigh' and not 'use' the information, and still pass the test. This distinction seems to be lost on the courts though, as <a href="http://www.bailii.org/cgi-bin/sino_search_1.cgi?sort=rank&query=%22use%20and%20weigh%22%20and%20%22mental%20and%20capacity%22&method=boolean&highlight=0&mask_path=/">a large number of judgments </a>use the incorrect conjunctive (not disjunctive) formulation. To be honest, I suspect nobody has thought very deeply about whether these words have different meanings, and I suspect there is a good deal of redundancy in the functional test with things popping up under one head which could probably as easily pop up under another ("she can't have <i>understood </i>the information, or she would not have <i>weighed </i>it like that...").<br />
<br />
Postscript: Another issue has been bothering me about this case. The case came to court because LM's partner of several years had been barred from seeing her (it's unclear by whom), and he challenged those restrictions. I wonder what would have happened if he had not initiated such a challenge? What authority did whichever body imposed those restrictions have to do so without <i>first </i>seeking the authority of the court? It strikes me that had her partner not initiated proceedings, her Article 8 rights would have been violated. </div>
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Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-20637473604314504542014-01-17T18:33:00.002+00:002014-01-20T13:10:24.507+00:00A secret court no more!<div dir="ltr" style="text-align: left;" trbidi="on">
So unless you missed the Daily Mail’s <a href="http://www.dailymail.co.uk/debate/article-2540976/At-victory-secrecy-courts.html">blaring headline</a> 'At last, a victory over secrecy in the courts' - the big news is that the Court of Protection is a ‘secret court’ no more! The Independent even <a href="http://www.independent.co.uk/news/uk/politics/formerly-secret-court-of-protection-commits-to-transparency-with-pledge-to-publish-judgments-9065263.html">ran a story </a>with the headline “Formerly secret court…”<br />
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Yes, Sir James Munby has published his Practice Guidance on ‘transparency’ – specifically on the publication of judgments of the Court of Protection and the Family Courts, but also touching upon other issues. There are separate guidance documents <a href="http://www.judiciary.gov.uk/Resources/JCO/Documents/Guidance/transparency-in-the-cop.pdf">for the Court of Protection </a>and <a href="http://www.judiciary.gov.uk/Resources/JCO/Documents/Guidance/transparency-in-the-family-courts-jan2014.pdf">for the Family Courts</a>, but they are quite similar and try to harmonise the approach across both courts, despite differing rules. They’re really quite short, but I’ll summarise what it says here anyway:<br />
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<b>The new(ish) approach</b></div>
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Munby says that ‘too few judgments are made available to the public, which has a legitimate interest in being able to read what is being done by the judges in its name.’ This guidance should lead to more judgments being published. He points out that increasing ‘transparency’ was a concern of his predecessor, Sir Nicholas Wall, suggesting a continuity of approach.<br />
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<b>The legal framework</b><br />
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Munby sets out the legal framework – that s12 Administration of Justice Act 1960 makes it a contempt of court to publish a judgment unless it is handed down in public or else authorized for publication by a judge.<br />
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<b>When judgments should be published</b><br />
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The guidance only applies to cases heard by Circuit and High Court judges, and the Senior Judge of the Court of Protection – not to district judges. There are two categories of case – those where a judge must ‘ordinarily’ publish a written judgment, and those where they ‘may’ do so. The first category, where judgments must ordinarily be published, includes cases where ‘a written judgment already exists in a publishable form or the judge has already ordered that the judgment be transcribed’ and it relates to one of the following matters:<br />
<ol style="text-align: left;">
<li>any application for an order involving the giving or withholding of serious medical treatment and any other hearing held in public; </li>
<li>any application for a declaration or order involving a deprivation or possible deprivation of liberty; </li>
<li>any case where there is a dispute as towho should act as an attorney or a deputy; </li>
<li>any case where the issues include whether a person should be restrained from acting as an attorney or a deputy or that an appointment should be revoked or his or her powers should be reduced; </li>
<li>any application for an order that an incapacitated adult (P) be moved into or out of a residential establishment or other institution; </li>
<li>any case where the sale of P’s home is in issue </li>
<li>any case where a property and affairs application relates to assets (including P’s home) of £1 million or more or to damages awarded by a court sitting in public;</li>
<li>any application for a declaration as tocapacity to marry or to consent to sexual relations; </li>
<li>any application for an order involving a restraint on publication of information relating to the proceedings.</li>
</ol>
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In the guidance on the Family Courts, there is also a list of cases heard under the inherent jurisdiction concerning incapacitated or 'vulnerable' adults which fall into the same 'ordinarily must be published' category:</div>
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<div>
<ol style="text-align: left;">
<li>any application for a declaration or order involving a deprivation or possible deprivation of liberty; </li>
<li>any application for an order involving the giving or withholding of serious medical treatment; </li>
<li>any application for an order thatan incapacitated or vulnerable adult be moved into or out of a residential establishment or other institution; </li>
<li>any application for a declaration as to capacity to marry or to consent to sexual relations; </li>
<li>any application for an order involving a restraint on publication of information relating to the proceedings.</li>
</ol>
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In any other case, the starting point is that if a party or accredited member of the media applies for an order for the judgment to be published, permission should be given. The Guidance says that 'Permission to publish a judgment should always be given whenever the judge concludes that publication would be in the public interest and whether or not a request has been made by a party or the media’. It also reiterates that judges must (obviously) consider any Article 6 (right to a fair trial), Article 8 (right to respect for home, family and private life) and Article 10 (right to freedom of expression) rights arising, as well as the potential impact of publication on current or potential criminal proceedings. The new guidance still permits judges to refuse to publish judgments or to make orders restricting their use if a particular case requires it.<br />
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<b>Anonymity (or not)</b></div>
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The judgments should be anonymised, unless the judge provides expressly to the contrary. Munby provides a standard rubric to include at the top which provides that the judgment may be published on condition of anonymity. Parties wishing to discuss their cases and identify themselves must apply for a court order for permission to do so, and the rubric may be varied.</div>
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One fairly big change which might ruffle some feathres concerns the anonymity of public authorities and professionals...The guidance says that ‘public authorities and expert witnesses should be named in the judgment approved for publication, unless there are compelling reasons why they should not be so named’ and ‘anonymity in the judgment as published should not normally extend beyond protecting the privacy of the adults who are the subject of the proceedings and other members of their families, unless there are compelling reasons to do so.’ Speaking personally, I would be quite interested to see how much 'clustering' of cases there is in the Court of Protection from particular local authorities, with others being less inclined to enlist the authority of the Court.<br />
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<b>£££s</b><br />
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Who will pay for these transcripts? The guidance says that where the case falls into one the ‘special’ categories where judgments should ordinarily be published, ‘the cost of transcribing the judgment shall be at public expense.’ Otherwise, the cost will fall upon the party making the application.<br />
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<b>Making them available online</b><br />
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When a judgment falling into the ‘ordinarily should be published’ category is published, it should be placed on BAILII ‘as soon as reasonably practicable’ by the court. If it’s a publication-upon-request judgment, then the judge can consider whether it should be placed on BAILII.<br />
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So, what do we think? The press are doing cartwheels, although I’m actually not sure how interested they are in judgments – as opposed to being able to attend and report on court proceedings, without having to make an application to do so. Still, it’s nice to see the guidance getting a positive response. The Mail have been taking credit for it – on the basis of their ‘Say No to Secret Courts’ campaign. I don’t want to knock their, erm, enthusiasm, but they were pushing at an open door really – Sir James Munby has been arguing for this for years. I suspect recent provocative articles, which at the very best presented a very skewed account of proceedings, may have accelerated the process, but I think he was bound to do this at some point anyway.<br />
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How many more judgments will we see now? It’s an interesting question. More and more DoLS cases, and perhaps welfare cases, falling in the ‘special category’ are being heard by district judges, so we still won’t get a complete picture of the Court’s work (but then, we don’t for other courts at a similar level, so that’s not really so surprising). As Donald Rumsfeld would put it – the quantity of unpublished judgments is a ‘known unknown’. Only time will tell. Who knows whether we’ll now have time to read them all! And who knows how secure the guarantees of anonymity will be under the new regime, or whether instead of seeing families protesting that they want to tell their stories, we’ll also start to see families who’d rather their story wasn’t being broadcast. Having said that, of those judgments published to date, we haven't learned of any terrible consequences from the publication itself (although there's no particular reason to think we should know about it if there were). One thing’s for sure: the media may come to miss the day when they could make up fanciful details of a case without anybody being able to check up on it…</div>
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(I know! Two blogposts in one day!! The benefits of a long commute…)</div>
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Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-62184337293783682072014-01-17T16:50:00.000+00:002014-01-17T17:02:12.625+00:00Whose right is it anyway?<div dir="ltr" style="text-align: left;" trbidi="on">
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This lovely postcard is from <a href="http://twitterpostcards.wordpress.com/">George Julian’s website</a>, which she set up to help LB’s family <a href="http://sarasiobhan.wordpress.com/fundraising/">raise funds for legal representation at LB’s inquest</a>. The website is fantastic – with a <a href="http://twitterpostcards.wordpress.com/lbs-buses/">world map of destinations for postcards of LB’s buses</a> and other pictures, sold as part of the fundraising effort. So many people, all over the world, moved by LB’s death. I hope our buses postcards keep us thinking and reflecting on how deaths like LB’s can be averted, and what a waste of a beautiful and talented person’s life it is for them to die whilst incarcerated.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpBL5RDFNLDWhqGP-m_tcGR5dYtMnX_v3Q7vUuaQ0v6XvVUdbfHRVq7BObPzvyHlm__qNeg4rkp3WoQRKEGk8lS4uHKn2k-0O3IeaLv5_NDqX7kRakC-ajnCQtG2O5ME7ebD9oa1Okw2o/s1600/right-to-liberty.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpBL5RDFNLDWhqGP-m_tcGR5dYtMnX_v3Q7vUuaQ0v6XvVUdbfHRVq7BObPzvyHlm__qNeg4rkp3WoQRKEGk8lS4uHKn2k-0O3IeaLv5_NDqX7kRakC-ajnCQtG2O5ME7ebD9oa1Okw2o/s1600/right-to-liberty.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photograph of a postcard reading 'Everyone has the right to life, liberty and security of the person'. The image is of a person reaching towards the sun. The postcard appears to be based on a collage, made by cutting out pieces of paper in simple shapes.</td></tr>
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George bought the postcard at the United Nations, and the text is from Article 3 of the Universal Declaration of Human Rights (UDHR). The picture is especially apt for something I’ve been wanting to blog (rant) about for some time now: the <i>universality</i> of the right to liberty. <br />
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The right to liberty is contained in many human rights instruments, and most include a right for detainees to take proceedings before a court to determine the lawfulness of their detention. These rights of ‘appeal’ are framed in universal language as well. Article 5(4) of the European Convention on Human Rights (ECHR), sets it out like this:<br />
<blockquote class="tr_bq">
‘Everyone who is deprived of his liberty by arrest or detention shall be entitled to take proceedings by which the lawfulness of his detention shall be decided speedily by a court and his release ordered if the detention is not lawful.’</blockquote>
The <a href="http://www.legislation.gov.uk/ukpga/2005/9/contents">Mental Capacity Act 2005</a> deprivation of liberty safeguards (MCA DoLS) were in part created because there was no obvious, accessible or appropriate means to bring proceedings to determine the lawfulness of the detention of ‘incapacitated’ people, detained under the ‘common law’. The mechanism for challenging detention under the DoLS is <a href="http://www.legislation.gov.uk/ukpga/2005/9/section/21A">s21A MCA</a> – which allows an applicant to ask the Court of Protection to determine the lawfulness of various aspects of a standard authorization for detention issued by a supervisory body (a local authority exercising its DoLS functions). The Court of Protection may vary or terminate standard authorizations as it sees fit. The trouble is, this ‘appeal’ mechanism is pretty obscure and is poorly understood.<br />
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In the case I want to discus in this blog post – <a href="file:///C:/Users/Lucy/Dropbox/Work/The%20Small%20Places/Charts">Re UF (2013)</a> – Mr Justice Charles said that the case law on s21A was ‘scant’ (§ 10). Disappointingly the Court of Appeal recently refused to consider precisely what Article 5(4) entitles DoLS detainees to by way of a hearing or judicial determination once the application has been made to the Court (<a href="http://www.bailii.org/ew/cases/EWCA/Civ/2013/1661.html">TAQ v AA</a>). But setting aside the question of what happens once a case is in court to discuss another day, I think there are fundamental questions about how and when these cases go to court at all which are not well understood.<br />
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I’m go to lay it on the line here and say what I think Article 5(4) entitles a DoLS detainee to. I should say that this is <i>my interpretation </i>of the ECHR case law, and no domestic court has yet said as much. I should also say that I recognize that the financial repercussions of what I think Article 5(4) entitles a DoLS detainee to are deeply uncomfortable because of the (sometimes) very <a href="http://localgovernmentlawyer.co.uk/index.php?option=com_content&view=article&id=9259%3Acosting-the-deprivation-of-liberty-safeguards&catid=52%3Aadult-social-services-articles&q=&Itemid=20">high cost of DoLS proceedings</a>. But I’m not aware of any qualifications on Article 5(4) rights for financial reasons except those relating to the frequency of applications (although please feel free to enlighten me in the comments!). If there's a problem with the costs of Article 5(4) appeals let's address that, before rewriting the universality of human rights instruments.<br />
<ul style="text-align: left;">
<li>People who are deprived of their liberty have an absolute right to bring proceedings under Article 5(4) even if they ‘lack capacity’ (<a href="http://www.bailii.org/eu/cases/ECHR/2008/223.html">Shtukaturov v Russia</a>, <a href="http://www.bailii.org/eu/cases/ECHR/2012/46.html">Stanev v Bulgaria</a>, <a href="http://www.bailii.org/eu/cases/ECHR/2012/254.html">DD v Lithuania</a>, <a href="http://www.bailii.org/eu/cases/ECHR/2012/1809.html">Kędzior v Poland</a>, <a href="http://www.bailii.org/eu/cases/ECHR/2012/1960.html">Sýkora v Czech Republic</a> etc etc). My interpretation of these recent 'capacity and detention' cases is that ‘incapacity’ can impose no limitations on the right of detainees to initiate Article 5(4) proceedings, such as restrictions on standing to bring a case, or requirements for the permission of third parties.</li>
<li>There is a right to bring proceedings under Article 5(4) at ‘reasonable intervals’ (<i>DD v Lithuania</i>). </li>
<li>The right to bring proceedings under Article 5(4) is especially important where the initial decision to detain is made without the involvement of the courts (<i>DD v Lithuania, Kędzior v Poland, </i><a href="http://www.bailii.org/eu/cases/ECHR/2013/65.html">Mihailovs v Latvia</a>). This will usually be the case under the DoLS, and so detaining authorities and other professionals should be especially alert to when detainees may want to exercise their Article 5(4) rights.</li>
<li>People with disabilities may require ‘special procedural safeguards’ in order to help them exercise their Article 5(4) rights (see almost any case on mental health detention you care to look at going back to <a href="http://www.bailii.org/eu/cases/ECHR/1979/4.html" style="font-style: italic;">Winterwerp v the Netherlands</a>)<i>. </i> Where a person is ‘incapable’ (in a practical sense, or in a legal sense) of bringing an appeal under Article 5(4), these safeguards ‘may well include empowering or even requiring some other person or authority to act on the patient’s behalf in that regard’ (<a href="http://www.bailii.org/eu/cases/ECHR/2013/1008.html">MH v UK</a>; see also the final paragraph of <a href="http://www.bailii.org/ew/cases/EWHC/COP/2011/1377.html">LB Hillingdon v Neary</a>). I interpret this to mean that an array of actors – including the supervisory body, Independent Mental Capacity Advocates (IMCAs), and any paid representatives – are likely to have positive obligations under the Human Rights Act 1998 (HRA) to help empower P to ‘appeal’ using s21A MCA. I’ll expand upon what I think these duties probably are below.</li>
<li>If a person is reliant on third parties to help them exercise their Article 5(4) rights, those persons must be under a clear duty to help, which is not dependent upon their discretion or goodwill (<i>Stanev v Bulgaria, DD v Lithuania, Lashin v Russia, Shtukaturov v Russia, MH v UK, Sýkora v Czech Republic, Winterwerp v the Netherlands</i>). I think that this means that regardless of what they themselves think about the detention - and even if all other professionals and family believe that detention is in P’s best interests - if P wants to challenge his detention, the public authorities have a duty to ensure the requisite assistance is provided.</li>
<li>The right to bring proceedings under Article 5(4) is not dependent upon a person demonstrating ‘prospects of success’ (<a href="http://www.bailii.org/eu/cases/ECHR/2002/804.html">Waite v UK</a>; and see also the case <a href="http://www.bailii.org/ew/cases/EWHC/COP/2011/727.html">A Local Authority v A, 2011</a> on the importance of hearing even cases where the arrangements seem beneficial). Again, this reiterates the point that just because everybody is in agreement that the deprivation of liberty is in P’s ‘best interests’, P still has a right to bring Article 5(4) proceedings (and to any assistance he needs to do so).</li>
</ul>
In the ruling in <i>Neary</i>, Mr Justice Peter Jackson said that ‘The nature of the obligation [to enable P to bring proceedings to determine the lawfulness of his detention] will depend upon the circumstances’ (§202). The take home message from <i>Neary </i>seemed to be that where there is disagreement between public authorities and family members about P’s care and treatment, public authorities must seek authority from the Court of Protection (§ 20-22). Whilst I think this is an essential fall back position, and important for Article 8 issues, I’m not sure this is a very sensible general approach to apply to Article 5(4) situations for various reasons. Firstly, the obligation to go to court – as formulated by Jackson J in § 20-22, but not § 202 – looks as if it is disagreement between professionals <i>and family, </i>rather than P himself, which should prompt an application to the Court of Protection. But it surely can’t mean that if family and professionals are in agreement, but P objects, that P has no independent rights to challenge his detention. He’s not the family dog, for goodness sake. Family may very well be an important potential source of support for a person in exercising their Article 5 rights, but <i>they do not own them</i>. And secondly whilst it may make sense for local authorities to bear the responsibility for apply to court regarding Article 8 issues, surely (?!) the DoLS cannot have been designed with the intention that the detaining authorities themselves would be responsible for triggering an Article 5(4) challenge against their own decisions. Or if they were - surely it would have been a clear statutory duty? I'm not saying that supervisory bodies should stop applying to court, I'm saying that if this is the way the system was designed, it's not very clear and it's not a great design for a detention safeguard.<br />
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If you look at the actual statute – not the DoLS code of practice – I think there <i>is </i>a mechanism which is supposed to satisfy the need for ‘special procedural safeguards’ to enable P to exercise his Article 5(4) rights of appeal, and that is IMCAs under s39D. I don’t know how many times I’ve gone on about this here, but I just don’t think that supervisory bodies and IMCAs understand <a href="http://www.legislation.gov.uk/ukpga/2005/9/section/39D">s39D MCA</a>. If you work with the DoLS and you do anything after reading this post, <i>please read s39D</i>. The first part (s39D(5)) basically requires supervisory bodies to identify people who – like MH in the case <i>MH v UK </i>– would require assistance in being able to apply to the Court of Protection, and make a referral to an IMCA for them. This, I suspect, will be most people detained under the DoLS and many of their representatives: the government impact assessment estimated that 80% of unpaid representatives would require this assistance. The duty to refer under s39D(5) is a <i>proactive duty, </i>not a passive duty. Supervisory bodies aren’t supposed to be sitting around waiting to be asked for an advocate – it’s up to them to assess whether a person needs one and make a referral accordingly. </div>
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The <a href="http://www.cqc.org.uk/public/news/protecting-people%E2%80%99s-human-rights-when-they-cannot-consent-treatment">latest DoLS report by the CQC</a> surveyed a large proportion of supervisory bodies and interviewed a selection of them, and found that they were by and large ‘offering’ an IMCA to P and P’s representative (p29). With respect to the CQC, I don’t think the duty is simply to ‘offer’ support from an IMCA under s39D (for example, in a standard letter). The statute clearly says that the supervisory body <u><b>‘must instruct’ </b></u>an IMCA where P and his representative would need help exercising their rights, not merely <i>offer </i>a referral. I’m not sure that most DoLS detainees would understand the implications of requesting or declining the offer of an s39D IMCA in any case; it strikes me that any failure on the part of P to ‘request’ an advocate wouldn’t mean that the duty to refer under s39D(5) had been discharged, even if an ‘offer’ had been made. In <i>Neary</i>, failure to make a referral to an IMCA under s39D contributed to a finding of a violation of Article 5(4).<br />
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The second issue, which I’ve gone on about time and time again, is that s39D(8) MCA obliges IMCAs to help P to exercise his rights of appeal ‘if it appears to the advocate that P or R wishes to exercise that right’. This isn’t a discretionary duty – the MCA doesn’t say that IMCAs should only help P to appeal if it’s in his ‘best interests’ or if he has strong prospects of success. And I think any temptation to read that into the statute should be quashed by the case law I’ve outlined above which makes very clear that the exercise of Article 5(4) rights should not depend upon the discretion of third parties or a person’s case having good prospects of success.* This was also a concern raised by the CQC in their latest report. This is my personal view, but I think supervisory bodies which do not proactively make referrals to IMCAs under s39D MCA when P would need assistance in making a s21A MCA application are violating his Article 5(4) rights. And I think s39D IMCAs who sit on their hands when P is objecting and do not help him to make a s21A MCA application (for example, by helping him find a solicitor) may also be violating his Article 5(4) rights (this depends on whether they are a public authority under the HRA), and they are almost certainly violating their statutory duty under s39D(8). <br />
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A recent case set me thinking about an additional complication in the DoLS: paid representatives. In <a href="http://www.bailii.org/ew/cases/EWHC/COP/2013/4289.html">Re UF [2013] EWHC 4289 (COP)</a> Mr Justice Charles dealt with some of the legal aid issues that can arise under the DoLS (round of applause for him and UF’s pro bono lawyers!). But in the background to that case is quite a serious question (I think) about the role of paid representatives under the DoLS. For various reasons** I’m pretty sure that UF had a paid representative under the DoLS. The judgment also indicates that UF was objecting to her detention. But it seems as if the representative had taken no action to initiate a s21A MCA challenge – either in their own name, or in UF’s name ‘as the representative agreed with the best interests decision on placement that was made, a clear inference is that he or she would not be inclined to initiate or to take any steps to challenge that decision or the ensuing deprivation of liberty’. (If I'm wrong about this, and there was a separate legal action which the judgment didn't report, my apologies).<br />
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Now, DoLS detainees with a paid representative are not entitled to assistance from a s39D IMCA. So who is supposed to provide the assistance required by Article 5(4) to help a person to appeal (as outlined in <i>MH v UK </i>and <i>Neary</i>)? I strongly suspect it is the paid representative although – as Mostyn J notes in <a href="http://www.bailii.org/ew/cases/EWHC/COP/2011/3151.html">AB v A Local Authority and The Care Manager of BCH [2011] EWHC 3151 (COP)</a> - the role of the RPR is not set out very clearly in Schedule A1 or regulations: there are various rights, but few responsibilities. I think it’s about time the courts – or a revised code of practice – set out precisely the duties of paid representatives (and clarified the duties of s39D upon supervisory bodies and IMCAs). Otherwise, people with paid representatives will find themselves without the assistance they would have been entitled to under s39D MCA to appeal, but may – as appears to have been the case for UF – have a representative who is unwilling to help them exercise their Article 5(4) rights. That situation cannot be compatible with the ruling in <i>MH v UK</i>. It shouldn’t be left – as it was in UF's case – to relatives to help P to exercise his Article 5(4) rights where he is objecting. Family members, even as representatives, are under no legal duty to help P to apply to the Court of Protection, and there are many many reasons why family members are not in a good position to do so: the DoLS are hideously complicated and family members may themselves not be emotionally or practically in a position to make a court application. And in many cases they might support the detention, or be proposing an alternative which P does not want. To expect family to trigger the appeal places them under an unreasonable burden.<br />
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As I’ve already written, P is not the family dog. His rights of appeal don’t belong to family members, IMCAs, paid representatives or anybody else to dispose of as they wish. It would be totally arbitrary if the only cases reaching the Court of Protection are the ones where P’s family fell out with professionals, regardless of what P himself thinks about his detention. P may be thought to lack capacity but he still has a right for <i>his </i>objections to his detention to be heard and adjudicated on. IMCAs under the DoLS are not quasi-judges, or – as a leading group of lawyers put it in their evidence to the House of Lords Select Committee on the MCA, ‘pseudo independent best interests assessor[s]’ (<a href="http://www.parliament.uk/documents/Mental-Capacity-Act-2005/mental-capacity-act-2005-vol1.pdf">see the evidence from Victoria Butler-Cole, Neil Allen, et al</a>). I don't think their role is to decide which cases are worthy of going to court and which are not; when it comes to the DoLS they are <i>advocates, </i>there to assist and enable P to exercise his rights.<br />
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I think that our thinking around Article 5 goes a bit woolly when ‘incapacity’ is on the scene. A bit ‘Don’t you worry about that right, I’ll look after it for you’. A bit ‘That old thing?! You don’t want that old thing! What’s somebody like you going to do with a thing like that?’ A bit ‘Here now, don’t you be causing any trouble with that right’. To be blunt, I think we’ve forgotten who the right to challenge a deprivation of liberty belongs to. I think we think it belongs to everybody except the detainee themselves. <br />
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*In a purely technical sense, I’m not even sure if the MCA is engaged here. IMCAs aren’t acting as an LPA or a deputy, and the ‘general defence’ of s5-6 applies to acts of care and treatment – but helping somebody exercise their Article 5(4) rights is a legal act. Nothing in the statute says that s39D IMCAs must act in P’s best interests. And even if they must act in a person’s best interests, a person’s legal best interests may be very different from their ‘care and welfare’ best interests – as the <a href="http://www.lawsociety.org.uk/advice/practice-notes/mental-health-tribunals/">Law Society guidance</a> to solicitors in mental health tribunals points out.<br />
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**Although the judgment does not say the RPR was not a relative of UF, the judgment does discuss the responsibilities of RPR in an another case involving a paid RPR - <a href="http://www.bailii.org/ew/cases/EWHC/COP/2011/3151.html">AB v A Local Authority and The Care Manager of BCH [2011] EWHC 3151 (COP)</a>. In the discussion on who can be UF’s litigation friend, one of the issues is ‘equality of arms’ in the dispute between UF’s children about where UF should reside. If AF – the daughter who objected – were UF’s litigation friend, she would be entitled to non-means tested legal aid to argue her view. The implication was that the other relatives would not – but at least one of them would be if they were the RPR. So I suspect they were probably not the RPR. </div>
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Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-23525831846906278192014-01-15T11:10:00.000+00:002014-01-17T14:28:02.932+00:00Sign Age UK's petition to close the human rights loophole in care!<div dir="ltr" style="text-align: left;" trbidi="on">
I've written many times before on this blog about the utter disgrace that users of private and independent sector care services are not protected by the Human Rights Act 1998. This is because of a 'loophole' which arose out of a controversial ruling by the House of Lords in a case called <a href="http://www.bailii.org/uk/cases/UKHL/2007/27.html">YL v Birmingham City Council</a>. In that case, the House of Lords prioritised poor old Southern Cross' right to make a profit* over the rights of an elderly lady with Alzheimers whom they wanted to evict from the care home where she lived because they had fallen out with her family. Mrs YL's lawyers were concerned that transferring her to another care home in such a late stage of her Alzheimer's could seriously harm her health, and perhaps even cause her death.<br />
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Campaigners have been trying to close this loophole for years now. Every so often somebody will introduce a private members' bill or an amendment to another piece of legislation to sort it out, and the government of the day won't get behind it (Paul Burstow MP has been particularly persistent in trying to fix this issue, sadly without success). The Labour government introduced an amendment to the Health and Social Care Act 2008 which said that if care was arranged under the National Assistance Act 1948 then the care provider was 'public authority' for the purposes of the HRA. Unfortunately, this didn't protect people using services arranged under other statutes, such as statutes to provide services to people in their own homes (as opposed to care homes) or aftercare for people who had been detained under the Mental Health Act. In any case, the new Care Bill going through Parliament at the moment will repeal these statutes - and so the amendment which protects service users who are placed under the National Assistance Act 1948 won't apply any more. Peers in the House of Lords have introduced an amendment to the Care Bill to ensure that everybody using care services are protected by the HRA. </div>
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<b>The government is now trying to remove the clause in the Care Bill which would mean that care service users were protected by the HRA. <a href="http://e-activist.com/ea-action/action?ea.client.id=31&ea.campaign.id=24857">Age UK have launched a petition to retain clause 48 </a>- the clause which would mean care service users are protected by the HRA. I strongly, strongly, urge you to sign it.</b><br />
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Sometimes it's argued (<a href="http://www.publications.parliament.uk/pa/ld201314/ldhansrd/text/131016-0001.htm#13101672000799">including by Conservative peers</a> in debates on the Care Bill) that people in care services are already protected by contract and tort law and don't need the additional protection of the HRA. This is not true. The HRA offers remedies for issues which are not always easy to capture under tort law. For example, issues like violations of 'dignity' or the imposition of excessively restrictive or controlling care regimes, issues like restricting contact with family or matters connected with privacy. In some situations positive obligations to protect people from harm or death are stronger under the HRA than under the tort of negligence. Contract only offers a remedy if you are a party to a contract, and when care is arranged by a public authority the service user will not be. And in any case, we might ask, if the HRA confers no additional liability on care providers - why do they lobby so hard against its application in care services? Furthermore, if there really are remedies in tort available, people would use those as they tend to be more lucrative than compensation under the HRA. The arguments that people are already adequately protected without the HRA simply do not stack up.</div>
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Some resistance to extending the HRA to care services may come from general ideological resistance to 'human rights'. But even the most ardent bashers of the HRA surely support the idea of human rights for care service users? The Daily Mail has a <a href="http://www.dailymail.co.uk/news/article-1313495/Daily-Mail-honoured-Dignity-Elderly-campaign.html">longstanding 'dignity for the elderly'</a> campaign - but it is the HRA that means that dignity can be an <i>enforceable </i>right. When the press are upset about care homes imposing restrictions on contact with families, it is the HRA - not remedies in tort or contract - which people can rely upon to enforce their right to family life. Some of the abuse at Winterbourne View would be covered by tort law, but far from all of it. </div>
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I hope I don't sound too cynical, but I'm not even sure the resistance to extending the HRA to cover care providers is purely ideological - I smell vested interests. The same vested interests that led Southern Cross to argue <a href="http://www.bailii.org/ew/cases/EWCA/Civ/2007/27.html">before the Court of Appeal</a> that care providers 'should have the freedom that any other private business might expect, to dispose of its resources in the way that seemed to it most profitable' and that 'constraints imposed on that freedom by Convention rights held by the residents... were inconsistent with the private status of the care homes.' If the idea that the human rights of care service users are just an obstacle to profit offends you, <a href="http://e-activist.com/ea-action/action?ea.client.id=31&ea.campaign.id=24857">sign here</a>. And if you think that human rights are no obstacle to profits, what's stopping you?</div>
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*Much good that did them!</div>
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Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-12531001680173900712014-01-07T14:45:00.002+00:002014-01-07T14:45:43.402+00:00Conference on Resource Allocation Systems<div dir="ltr" style="text-align: left;" trbidi="on">
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One of the most read pieces on this blog was some research which found that Resource Allocation Systems (RASs) - which are often used to calculate 'personal budgets' in social care planning - <a href="http://thesmallplaces.blogspot.co.uk/2011/09/how-transparent-are-personal-budgets.html">are often not very transparent</a>. Since then, I've done some further research with Luke Clements which found that they are often wildly inaccurate, are not especially good at reducing inequalities in resource allocation, can penalise people who live with family and ignore some potentially eligible needs altogether (Series, L. and L. Clements (2013). "Putting the Cart before the Horse: Resource Allocation Systems and Community Care " Journal of Social Welfare and Family Law 35(2): 207-226, FREE pre-print <a href="https://dl.dropboxusercontent.com/u/4397081/papers/Series%20%26%20Clements%202013%20Putting%20the%20cart%20before%20the%20horse.docx">here</a>). </div>
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Coincidentally, around the same time, Peter Beresford, Colin Slasberg and Peter Schofield also did some research which found that the original data which RAS were developed using suggested they would be very inaccurate, and also reviewed evidence that they were increasing - not decreasing - the bureaucracy around care planning (Slasberg, C., et al. (2012). "How self directed support is failing to deliver personal budgets and personalisation " Research, Policy and Planning 29(3): 161-177, FREE copy <a href="http://ssrg.org.uk/wp-content/uploads/2012/01/Slasberg-et-al.pdf">here</a>).</div>
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We are all speaking about RASs and our research at a <a href="http://www.law.cf.ac.uk/newsandevents/events2.php?id=710">National Conference at the King's Fund </a>at the end of February this year (details below). Sarah Carr - an expert in user involvement in care planning - will also be speaking. And if that's not enough to get you there, then Joan Bakewell is the keynote speaker! Details follow below.</div>
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A National Conference that reviews the use of eligibility criteria and Resource Allocation Systems (RAS) in the context of the Adult Law Reform programme – spear-headed in England by the Care Bill and in Wales, by the Social Services and Well-being (Wales) Bill.</blockquote>
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The Conference brings together leading experts on the practical impact of RAS, eligibility criteria and Adult Law Reform. Professor Peter Beresford of Brunel University and Colin Slasberg have undertaken extensive research concerning the disappointing progress of the self directed support / personalisation initiative: research which identifies the need for major changes to the nature and content of eligibility decisions. Sarah Carr, through her extensive experience in both the statutory and independent sectors, will provide further context to the discussions by focusing on user participation and the demands of ‘equality’ principles in personalising social care.</blockquote>
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The Conference will also hear from Dr Lucy Series and Professor Luke Clements of the Cardiff Law School whose research suggests that RAS (in their current form) have failed both for disabled people and for local authorities. Professor Clements’ presentation will concentrate on the impact of the new legislation, given that (1) the FACS criteria are to be recast and embedded in the new legislation ; and (2) some form of RAS mechanism will probably be needed to implement the ‘Dilnot’ reforms.</blockquote>
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The Conference is jointly promoted by the School of Health Sciences and Social Care, Brunel University and Cardiff Law School, Cardiff University.</blockquote>
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The Conference provides an opportunity for discussion, and debate and will be of especial relevance to those who are affected by the proposed legislation be they involved as service users, advocates, health and social care policy makers / practitioners, lawyers, researchers, independent sector service providers and policy activists.</blockquote>
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28th February 2014 @ 9:00am<br />Venue: The King's Fund<br />11-13 Cavendish Square<br />London<br />W1G 0AN<br /><br />Contact: enquiries@croesoevents.co.uk</blockquote>
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Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-23659893127136006432014-01-07T14:34:00.002+00:002014-01-08T18:06:07.731+00:00Fab PhD Studentships - Overcoming barriers!<div dir="ltr" style="text-align: left;" trbidi="on">
I get contacted fairly often by people asking about what it's like to do a PhD. I always tell them: if you have a topic that makes you bound out of bed in the morning and a good supervisor, then there's nothing better (and if you have an uninspiring topic or a bad supervisor, there's nothing worse...). <br />
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Here are some absolutely fascinating looking PhD's with some brilliant supervisors, which are being advertised by the Universities of Leeds, Sheffield and York:<br />
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<a href="http://www.york.ac.uk/sociology/postgraduate/pg-funding/disabled-sellfhood/#tab-1">White Rose Inter-Disciplinary Disability Studies Network- Complexity and Disabled Selfhood</a>:<br />
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<li>Imagining Work: Disabled Young People, Narratives on the Boundaries of Work and Welfare – Supervisors <a href="http://www.sociology.leeds.ac.uk/people/staff/roulstone">Professor Alan Roulstone</a>, University of Leeds and <a href="http://www.york.ac.uk/spsw/staff/peter-dwyer/">Professor Peter Dwyer</a>, University of York. This studentship will be based at the University of Leeds.</li>
<li>Contesting neoliberal education and able citizenship: Some postconventionalist alternatives – Supervisors <a href="https://www.shef.ac.uk/education/staff/academic/goodleyd">Professor Dan Goodley</a>, University of Sheffield and <a href="http://www.sociology.leeds.ac.uk/people/staff/beckett">Dr Angharad Beckett</a>, University of Leeds. This studentship will be based at the University of Sheffield.</li>
<li>Overcoming the barriers: including people with profound intellectual and multiple disabilities in research – Supervisors <a href="http://www.york.ac.uk/sociology/our-staff/academic/celia-kitzinger/">Professor Celia Kitzinger</a>, University of York and<a href="http://www.shef.ac.uk/socstudies/staff/staff-profiles/boxall"> Dr Kathy Boxall</a>, University of Sheffield. This studentship will be based at the University of York.</li>
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PhD's are hard to do without funding, but sometimes funded PhD's do come along covering not only fees but also providing an income which is usually somewhat better than the minimum wage (and can often be topped up with hourly paid teaching). The PhD's <a href="http://www.york.ac.uk/sociology/postgraduate/pg-funding/disabled-sellfhood/#tab-3">come with</a> 'full award paying tuition fees and maintenance'; I'm informed that 'they are available on a 1+3 basis so will pay for an MA in social research also-so they are worth 80K over 4 years, teaching is normally available also'. I think they are funded by the <a href="http://www.esrc.ac.uk/">ESRC</a> - which often means there are additional opportunities for funding and training.</div>
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Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-42129462581573427692014-01-06T14:43:00.002+00:002014-01-07T12:38:58.909+00:00A message from Pembrokeshire<div dir="ltr" style="text-align: left;" trbidi="on">
Happy new year! As some of you may have already noticed, the <a href="http://www.parliament.uk/business/committees/committees-a-z/lords-select/mental-capacity-act-2005/">House of Lords Select Committee on the Mental Capacity Act 2005</a> has published two volumes of the written evidence it has received and (most of the*) oral evidence, coming to a whopping 1832 pages of evidence on the Act. I confess, I have not yet read it all... I am sure the Committee were reading it over their Christmas dinners to get their report ready for February 28th!<br />
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One submission by twelve leading Court of Protection lawyers has been <a href="http://www.independent.co.uk/news/uk/home-news/mental-health-patients-being-denied-human-rights-in-court-warn-leading-lawyers-9038003.html">making waves in the Independent</a>, which is the first newspaper to pay any serious attention to the Committee. They have picked up on an issue raised by the lawyers and which <a href="http://thesmallplaces.blogspot.co.uk/2013/10/the-rule-of-personal-presence.html">I've written about here before</a> - the extent to which judges meet with the people whose capacity and best interests they are determining. It's good to see the media taking an interest in genuine human rights concerns instead of concocting wild conspiracy theories which distract attention from the real issues. (My drag-net has just picked up that <a href="http://www.dailymail.co.uk/news/article-2534300/Court-orders-autistic-mans-teeth-removed-Decision-taken-closed-doors-stop-self-harming.html">the Mail is now covering the House of Lords Committee</a>, with a headline which typically misunderstands what they are trying to report - the aforementioned barristers gave an example of 'a case in which an autistic young adult had all his teeth permanently removed to stop him self-harming, <i><u>without the Court’s involvement</u></i>' (emphasis mine), while the Mail's headline read 'Court orders autistic man's teeth to be removed'. Eh? Oh dear Daily Mail. Sigh.)<br />
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A lot of evidence submitted to the Committee is from the usual suspects - laywers, academics (including yours truly), medical and social work practitioners, public bodies, professional bodies, NGOs - a lot of it very interesting and thought provoking. There is a fair bit of evidence from individual carers and relatives of people with disabilities or dementia, who have had dealings with the MCA or the Court of Protection. There are quite a few shocking tales of disregard for human rights in their stories. But - at least so far as I can see (and it is possible that I am missing something here) - I can only see one piece of evidence which has attempted to capture what people who have first hand experience of being subject to the Mental Capacity Act (MCA) think about the whole thing. New years honours go to Pembrokeshire People First for their submission, and the <a href="https://dl.dropboxusercontent.com/u/4397081/blog/BIHR%202013%20Guide%20to%20MCA%20Committee.pdf">British Institute for Human Rights</a> for producing the guide to giving evidence which this was based on. It's so important that we listen to the voices of people who are directly affected by the Act, I'm going to repost below what they had to say here for you to read. <br />
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<a name='more'></a>I think we need to think very long and very hard about the scarcity of research and evidence on the MCA from the very people who are subject to it. We need to think about why <i>not a single one </i>of all the major and well conducted studies on the MCA that are being published (that I have found) has managed to capture the voices of people who are said to lack capacity about their thoughts on the MCA and its impact on their lives. We need to think about why the CQC - despite increasingly valiant attempts - has not yet managed to capture the voices of people subject to the deprivation of liberty safeguards (DOLS), when it has managed to do this for the Mental Health Act 1983 for decades. We need to think about why the call for evidence seems to have bypassed the major disabled people's organisations** and other self-advocacy organisations.<br />
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As a researcher, I am aware that it is <i>extremely </i>challenging to conduct research involving people who 'lack capacity'. Not only are they a hard to access population, the level of regulation of research in this field is mind boggling, and part of that comes down to the research provisions of the Mental Capacity Act 2005 itself. I'm not kidding when I say that the paperwork to just ask a person who may lack capacity how they felt about the capacity assessment process or a best interests decision in a research context exceeds that for depriving them of their liberty under the DoLS. But whilst acknowledging these challenges - there is still no excuse. We as researchers are failing (I include myself in this). We cannot just settle for the perspectives of professionals and families on the Act, and assume this conveys what people who are directly affected by it feel about having their capacity assessed or being subject to best interests decisions or DoLS. People manage to clear these access, legal and ethical difficulties when they want to do research <i>on </i>a population's mental capacity, or trial some intervention on them, or observe them in their care home or whatever. My new year's resolution is to do everything I can in a current research project I am working on to ensure it tries to capture the experiences and views of people alleged to lack capacity in relation to the Court of Protection.<br />
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Anyway, without further ado, here is what the good people of <a href="http://www.pembrokeshirepeople1st.org.uk/">Pembrokeshire People First</a> had to say about the Mental Capacity Act. For the first set of questions, each letter represents a different person - so their responses can be tracked across the different questions. The second set of responses are taken from a group. As you can see, people's experiences and feelings about the MCA and the extent to which they are able to make choices in their everyday lives are quite mixed:<br />
<blockquote class="tr_bq">
<b>1. What do you think about people like social workers making assessments about what you can and cannot do?</b></blockquote>
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a) Sometimes it annoys me a bit – I usually make my own decisions. I think people make snap decisions without seeing me day to day, what I’m like when I get out of bed in the morning or when I go to bed at the end of the day.<br />
b) Social people are a waste of space. It was not until I had Sheila and PPF (advocates) that they did start listening to me. They listened to me after.<br />
c) <br />
d) I think they (social workers) suffer from the condition themselves and they are judging other people. I think social workers predominantly think about themselves. We are just products to them, not people. You could probably go so far as to say that we are just cattle being herded.<br />
e) I can’t get out of bed on my own and I can’t do the bath myself. I need people to make assessments.<br />
f) It depends on who it is. I don’t generally get along with most people. Only some people understand me and I lack trust. I’d know as soon as I saw the person I’d be able to make my mind up about them. If it was someone I knew and liked I’d be happy with the assessment. For someone to do the assessment, they’d have to know me well otherwise it would go totally to pot.<br />
g) It’s wrong. I’ve got capacity to do things. Nobody should have the right to make decisions for me. From now on, I call the tune; it’s time people listened to me.</blockquote>
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<b>2. Has that happened to you?</b></blockquote>
<blockquote class="tr_bq">
a) People have made decisions like when I had my breakdown and they said I had to go to hospital. But the medicine kind of thing wasn’t done without kind of letting me know.<br />
b) <br />
c) In the past – it made me pissed off.<br />
d) Of course I’ve been assessed many times. I thought it was a load of b.s.. I thought they were judging me. They were treating me like how they felt they wanted to treat me.<br />
e) <br />
f) It might have happened to me.<br />
g) They got told: do not tell me what I can and cannot do. I try to do what my dad taught me. People wind me up telling me what to do. I just want peace.<b><br /></b><b></b></blockquote>
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<b>3. Have other people told you that you are not capable of deciding something?</b> </blockquote>
<blockquote class="tr_bq">
a) Not that I know of.<br />
b) I can’t remember about that. I don’t think anyone ever told me what I can and can’t do.<br />
c) <br />
d) They may have.<br />
e) <br />
f) Yes, in (supported) houses. It’s mostly staff. They don’t think I’m as capable… they think I’m really disabled and can’t do much for myself when I really can do most things myself.<br />
g) I’m being treated like a disabled person not an able-bodied person.</blockquote>
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<b>4. Have you experience of someone making decisions for you?</b></blockquote>
<blockquote class="tr_bq">
a) Yes, they’ve tried to but I’ve usually given them a mouthful.<br />
b) Not really. I’ve always done everything myself.<br />
c) (For example) I’m not allowed to go for a walk by myself. It’s only because she (the manager of a supported group home) doesn’t want anything to happen to me. But I think I’m perfectly capable of going for a walk on my own.<br />
d) Yes, when I was wrongfully sectioned. I think it’s horrific how people treat people with disabilities. We’re always given the worst of it.<br />
e) Mum has over the years. Someone has to do that but I want to make my own decisions.<br />
f) They have done. I don’t like it.<br />
g) At my family member’s funeral, other people made decisions for me.<b><br /></b><b></b></blockquote>
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<b>5. Are you always supported to make your own decisions?</b></blockquote>
<blockquote class="tr_bq">
a) Not always, no. Even when I’ve had a problem I’ve had to sort it out myself. Apart from PPF (advocates) I’ve never had any help off anyone else.<br />
b) Most of the time I don’t have anybody. I just do it by myself… My husband always helped<br />
me when he was alive. Now I just have to cope on my own unless I have Sheila<br />
(advocate) or someone like that that.<br />
c) <br />
d) I’ve been supported by advocates. I’m being supported by my mum. Other than that, no.<br />
e) I don’t know about that. I would like more support. When I move I’ll have to stick up for myself… I’m happy to stick up for myself.<br />
f) Most of the time but sometimes they choose for me. It depends who it is. If they choose for me it makes me really cross and angry. I don’t like them making up my mind for me.<br />
g)<br />
<b></b></blockquote>
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<b>Mental Capacity Act – Group Responses</b><b></b></blockquote>
<blockquote class="tr_bq">
<b>1. What do you think about people like social workers making assessments about what you can and cannot do?</b></blockquote>
<blockquote class="tr_bq">
It’s okay. She (the psychologist) means well; she’s doing that for me so I can have more freedom. But I would be annoyed if someone told me what to do.<br />
Say I’d got a timetable what to do they (social workers) tell me what to do, not what I want to do. You ought to make your own decisions.<br />
So long as you’re with your social worker and you are involved, it’s alright. If someone’s doing an assessment without you (there), that’s annoying.<br />
That’s where Person Centred Planning comes in so you can have your own voice to speak up for yourself. It’s all about preparing beforehand and always involving the person. </blockquote>
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<b>2. Has that happened to you?</b></blockquote>
<blockquote class="tr_bq">
[Four out of five said they had experience of this. There was only one additional comment.]<br />
My social worker, doctor and nurses (did that) but your assessment should be about you doing it.</blockquote>
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<b>3. Have other people told you that you are not capable of deciding something?</b><b><br /></b><b></b></blockquote>
<blockquote class="tr_bq">
<b>4. Have you experience of someone making decisions for you?</b></blockquote>
<blockquote class="tr_bq">
[Note: questions 3 and 4 were taken together.]<br />
Yes. I say I make my own decisions myself but I’m not listened to.<br />
Yes. I said to them I can look after myself but other people made decisions. I had no choice. <br />
I argued and argued but they said I had no choice. I thought I’d like to get out of there because I wasn’t listened to.<br />
The only person who can make decisions for you is you, yourself.</blockquote>
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<b>5. Are you always supported to make your own decisions?</b></blockquote>
<blockquote class="tr_bq">
[Four out of the five said ‘no’. Additional comments follow.]<br />
There’s always someone from social services you’re not happy with.<br />
If you’re capable of making decisions on your own, you do. On my own experience, I’m not going down the social services route because they’re awful.<br />
Sometimes it’s good, sometimes it’s not. It all depends on what it (the decision) is about.<br />
Sometimes support workers make decisions for me but I’d like to make my own decisions.<br />
Because I’m in supported living it’s difficult for me to make my own decisions.</blockquote>
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*There are a few oral evidence sessions I can't find in there - including the evidence from the judges - I'm not sure if I'm missing something?<br />
**A disabled people's organisation (DPO) is an organisation which is user-led by people with disabilities, rather than being 'about' or 'for' people with a particular disability.</div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com3tag:blogger.com,1999:blog-7327718065135964598.post-40395256236648043032013-12-24T15:22:00.001+00:002013-12-24T17:04:46.244+00:00Happy Christmas<div dir="ltr" style="text-align: left;" trbidi="on">
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It’s Christmas Eve. The
cat has been bundled into the car, driven up the M5 and is now eyeing up my
in-laws’ Christmas Tree. Carols from
Kings is on the radio. The presents are
wrapped, tomorrow’s veg are being prepared, I am drinking a cup of mulled tea (I know: <i>mulled tea</i>, it’s quite nice) and it seemed like a good time to
redesign the blog. This one’s for you
Richard. Happy Christmas, season’s
greetings and have a wonderful new year everyone. Now I’d better go and retrieve that cat...</div>
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<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF2V93nXLf752h7QzW2ep8xNZrPI-LZCbGLwAEsZRNsY6hihckoTuHbnHgH83J8MrQgp341MAokSoBsDl-XLfLI7rfNmwnCQTkvGLBpcTD27vATvANp4Ogci9b8rAtc9ks1odvOcAXQig/s1600/20130110_104431.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF2V93nXLf752h7QzW2ep8xNZrPI-LZCbGLwAEsZRNsY6hihckoTuHbnHgH83J8MrQgp341MAokSoBsDl-XLfLI7rfNmwnCQTkvGLBpcTD27vATvANp4Ogci9b8rAtc9ks1odvOcAXQig/s640/20130110_104431.jpg"> </a> </div>Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-320557553149019822013-12-03T10:35:00.000+00:002013-12-05T12:46:41.475+00:00More questions than answers - on the 'forced caesarean' case<div dir="ltr" style="text-align: left;" trbidi="on">
[Update 04/12/2013: The <a href="http://www.judiciary.gov.uk/media/media-releases/2013/judicial-statement-re-p-child">judgment in the Court of Protection hearing </a>of this case has now been published, as has <a href="http://www.judiciary.gov.uk/media/media-releases/2013/judicial-statement-re-p-child">one of the judgments </a>in the public law Children Act proceedings. On the Court of Protection judgment, I recommend reading the <a href="http://mentalhealthandcapacitylaw.wordpress.com/2013/12/04/a-post-which-is-about-caesarean-without-consent/">commentary by Nell Munro</a>, <a href="http://suesspiciousminds.com/2013/12/04/the-judgment-from-court-of-protection-in-the-caesarean-section-case/">Suesspicious Minds</a> and <a href="http://www.birthrights.org.uk/2013/12/views-on-the-forced-cesarean-judgment/">Elizabeth Prochaska's piece on the Birthrights blog</a>]<br />
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On Saturday, the Telegraph ran a Telegraph <a href="http://www.telegraph.co.uk/comment/columnists/christopherbooker/10485281/Operate-on-this-mother-so-that-we-can-take-her-baby.html">column by Christopher Booker</a> , with the headline ‘Operate on this mother so that we can take her baby’. The column alleged that the woman had been visiting from Italy for work reasons when she was detained under the Mental Health Act 1983 in connection with bipolar disorder. One morning she was given no breakfast, then (according to Booker) ‘She was strapped down and forcibly sedated, and when she woke up hours later, found she was in a different hospital and that her baby had been removed by caesarean section while she was unconscious and taken into care by social workers’. An application to place her child for adoption is now before the courts, some fifteen months on. According to Booker, ‘social workers’ had been given permission to arrange this by the High Court.<br />
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By the end of Monday the <a href="http://www.dailymail.co.uk/news/article-2516270/Please-dont-baby-Agony-mother-baby-girl-adoption-secret-court-judge-forced-caesarean.html">Mail</a>, <a href="http://www.independent.co.uk/news/uk/home-news/social-services-forcibly-remove-unborn-child-from-woman-by-caesarean-after-she-suffered-mental-health-breakdown-8975808.html">the Independent</a>, even <a href="http://www.theguardian.com/commentisfree/2013/dec/02/caesarian-choice-allegations-forced-intervention-pregnancy-childbirth">the Guardian</a> had regurgitated versions of this story, quoting reaction from various public figures and commentators. Shami Chakrabarti of Liberty described the case as ‘the stuff of nightmares’, an Italian judge has described it as resembling ‘a horror film’. By the end of yesterday <a href="https://twitter.com/judiciaryuk">the Judicial Office</a> were tweeting that ‘Proceedings not yet concluded; President of Family Division has ordered the matter be transferred to High Court. President of Family Division has order any further applications in respect of the child are to be heard by him.’ There are now several hundred news stories about the case, and the mother concerned has sent a <a href="http://www.itv.com/news/update/2013-12-02/forced-caesarean-mother-sends-message-of-thanks/">‘message of thanks’</a> to the British people for their support.<br />
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If reports are correct – that the mother really was forcibly sedated, the baby delivered by caesarean with the express purpose of removing the child from her care and giving it up for adoption, and the mother and her own family was entirely kept in the dark about this plan – this does indeed sound like the stuff of nightmares. <br />
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But for those of us familiar with the work of the Court of Protection there were a number of alleged facts about this story which simply didn’t stack up. One common theme in the reporting of this story is the idea that the caesarean was for the protection of the child, not the mother, and that it was initiated by the local authority – Essex County Council – as part of their child protection role. This didn’t stack up to me, and – in fact – turns out not to be true. Essex Council have released a <a href="http://www.essex.gov.uk/News/Pages/Essex-County-Council-responses-to-interest-in-story-headlined-Essex-removes-baby-from-mother.aspx">timeline of events</a> which reveals that it was the Health Trust who applied to the Court of Protection for the caesarean, and their application for an interim care order (relating to the child) came a day later, in August 2012. This made sense to me, as although <a href="http://www.bailii.org/ew/cases/EWHC/COP/2012/1639.html">it is not unprecedented</a> for a local authority to apply to the Court of Protection regarding a healthcare intervention, it is unusual – and in any case the Court would have to be satisfied that doctors felt the intervention was clinically necessary and were willing to deliver it.<br />
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Another oddity was the claim that the caesarean was carried out for child protection purposes. Lisa Hallgarten <a href="http://www.theguardian.com/commentisfree/2013/dec/02/caesarian-choice-allegations-forced-intervention-pregnancy-childbirth">writes in the Guardian</a> that ‘There is no suggestion that the caesarean was necessary to protect her health or life, only that it was requested by social services to remove the baby for child protection purposes.’ Meanwhile, Sophie Khan, a respected solicitor-advocate, <a href="http://www.telegraph.co.uk/women/mother-tongue/10488040/Child-taken-from-womb-by-social-services-its-not-always-wrong.html">writes in the Telegraph</a>:<br />
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Based on the facts of the case the Court believed there was a risk to the unborn child and had to take steps to protect the child from harm. Such draconian steps are only taken by the Court if there is no other alternative, especially when it comes to children. As a society we must act in the best interest of the child and the Court of Protection, although many of you may not agree with its closed proceedings, is there to ensure that this interest is protected.</blockquote>
Unless there were temporary drastic changes to the Mental Capacity Act 2005 (MCA) and the Court of Protection Rules 2007 in August 2012, this simply cannot be true. Let me explain. The Court of Protection can only adjudicate on matters relating to the MCA, and the MCA relates to the ‘mental capacity’ and the best interests of the mother, not the child. The Court of Protection has absolutely no jurisdiction for child protection (unless the child is over 16, and subject to the MCA themselves). It is the family court, not the Court of Protection, which is concerned with child protection, and the family court has no jurisdiction to require caesarean sections on the mother. In short, unless the Court somehow suspended the rule of law and made up new rules – which I find hard to believe – the decision about the caesarean must have been based around the woman’s own best interests not child protection.<br />
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Decisions on best interests in the Court of Protection are not always about a person’s health, but in this case I would be surprised if the woman’s health were not a factor. It may not have been her physical health though, and it is possible that there were concerns that a natural birth or harm to the baby might harm her mental health, so it is possible that the child’s interests were indirectly relevant to the Court of Protection’s decision. This is pure speculation of course; unless the judgment is published, we cannot know what the reasons were. According to Essex County Council, <a href="http://www.theguardian.com/society/2013/dec/02/forced-caesarean-risk-mother-child">the health trust were concerned about risks to mother and child</a>, and that is why they applied to the Court of Protection. The risks to the child may have been incidental to the Court of Protection’s decision, or indirectly related through their entanglement with the mother’s own interests, but would never have been the sole motivating factor.<br />
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What I’ve just written is not meant to defend the actions of either the Health Trust or the local authority, just to say that there is a huge amount of misinformation out there about this case, and misinterpretation of the law – even amongst lawyers. And so we should tread very cautiously indeed when contemplating what this case means. In my view, this case – and the media storm around it – demonstrates exactly why the Court of Protection needs to publish anonymised judgments for controversial cases such as this. Without those facts being put in the public domain, people will invent them or misinterpret what has happened. Recent evidence to the House of Lords Select Committee on the MCA suggests that the senior judiciary of the Court of Protection and key players such as the Official Solicitor are well aware of this, and are encouraging judges to publish judgments to dispel the myth and rumour which can otherwise take hold. This case, apparently, was not published. I would not be surprised, however, if this case were published shortly in order to clarify what occurred, and I am sure that Essex County Council themselves would be grateful to have a clearer presentation of the facts to defend their actions.<br />
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Having said all that, and granted that there is a huge amount of myth and rumour in circulation, there are aspects of this case which ring alarm bells for me. The first tier of alarm bells was summed up by Lisa Hallgarten in the Guardian:<br />
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A <a href="http://www.sheilakitzinger.com/ArticlesBySheila/BIRTH_Sept1998.htm">landmark legal case has already established</a> that a woman has the right to refuse a caesarean even if there is a risk to the foetus of continuing pregnancy to term. There is no reason that the priority of rights should be reversed in a woman who is mentally ill. </blockquote>
You might call this the ‘disability rights’ perspective. Nonconsensual interventions under the Mental Capacity Act are linked to a disturbance or impairment in the functioning of the mind or brain. That does not only mean people with mental disabilities or mental health problems, but it certainly includes them. A recently ratified UN treaty – the Convention on the Rights of Persons with Disabilities - poses the question: why should people with disabilities and mental illnesses face these kinds of interventions when people without do not? It looks very much as if the Mental Capacity Act itself is not compatible with this Convention, although views on this differ. It is certainly a question it would be good to see the media asking more often. Cases like this – which really epitomise the violations of bodily integrity which the Mental Capacity Act can legislate for – really highlight the coercive edge which campaigners are concerned about.<br />
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Hallgarten goes on to ask:<br />
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Moreover, it is an open question how to distinguish between a woman's incapacity to make a decision and her right to make a decision that we might disagree with or which could be considered "irrational", in contradiction of medical advice or moral consensus.</blockquote>
Again, this is an issue that comes up a lot around the Mental Capacity Act 2005: how can we distinguish decisions which are merely irrational or unwise, which everybody is entitled to make, from those which are incapable. This is actually quite a profound philosophical problem (my own view is that it is insoluble; ‘mental incapacity’ is a conceptual device which we cling onto to mask the value judgments we are bringing to bear when justifying interventions in situations which we regard as intolerable). The disability Convention referred to above poses serious questions about how we deal with ‘capacity’, and emphasises the role of support for decision making. Even the Mental Capacity Act requires support to be provided for a person to make their own decision before it is made on their behalf, and decisions made on their behalf should involve the person as far as possible. If – as alleged – the woman was not consulted about the caesarean, it is difficult to see how these requirements could be complied with. These are all important questions, but until we see the judgment in this case we will not know how the Court of Protection managed the question of the woman’s capacity.<br />
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The allegation which set the most alarm bells ringing for me in this case, was the claim that the woman knew nothing about the plan to deliver her child by caesarean, knew nothing about the proceedings in the Court of Protection which decided this matter. If true (and given so many other elements of the story crumble on closer inspection, it may not be), this really is a very concerning factor. Even within the framework of domestic law as it stands – not the more radical disability Convention – this may be problematic. The leading case on performing caesarean’s without consent on mental capacity related grounds - <i>St George's Healthcare NHS Trust v S </i>[1998] 3 All ER 673, 698 – lays down guidance for health authorities applying to the Court for permission to go ahead with such interventions. This guidance emphatically stresses the importance of involving the mother in the Court proceedings, of notifying her of their existence and ensuring that she is represented in them. If it is true that she was not notified, this suggests that the Court of Protection in this case departed from the <i>St George’s </i>guidance – at least regarding notification. There are reasons why this might be permissible under the <i>St George’s </i>guidance – it may have been an emergency, or it may have been felt that the act of notifying the woman of the plan would itself have raised serious risks. We can only speculate at this stage.<br />
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Proceedings on a matter like this without notifying the woman are a very serious matter indeed, and would require very stringent justification. I am not sure I can think of any case where the Court of Protection has had to explicitly justify excluding a person in this way, it raises very serious human rights questions, and this is yet another reason why I think the Court should have published an anonymised transcript of the judgment. <br />
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As I’ve written before on this blog, the European Court of Human Rights has been laying down what has become known as the <a href="http://thesmallplaces.blogspot.co.uk/2013/10/the-rule-of-personal-presence.html">‘rule of personal presence’</a> for court cases regarding legal capacity. In essence, these cases emphasise that the participation in court of the person who is the subject of the case is very important, and can only be departed from on the basis of medical evidence, and where this is in pursuit of a legitimate aim, is necessary and proportionate. This is because if the person does not attend court they will not be able to rebut any arguments or facts advanced before the court which they dispute. The <i>St George’s </i>case referred to above is a pretty good demonstration of why this is important – in that case the health trust actually lied about the woman, saying she was in labour: had she been participating, they would not have been able to make this claim. Another reason why participation is important is because the Court is supposed to be able to come to it’s own view about matters such as a person’s health, mental state, their emotional state, and sole reliance on medical opinion is regarded as introducing a risk of excessive arbitrariness. We have seen a recent succession of Court of Protection cases where the court has rejected all the medical evidence as to mental capacity where the judge has met the person concerned: this cannot happen when the person is not participating. <br />
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Another reason why notification is regarded as important is because if a person does not know about the case, or the ruling, they cannot challenge it – in legal language, cannot use any remedies against it. Under Article 13 of the European Convention on Human Rights (ECHR), lack of access to an effective remedy is a violation of a person’s rights in itself. It is possible in this case that the woman may have actually had legal representation – through a litigation friend – without her knowing about it. The theory being that the litigation friend can represent her interests and exercise any remedies on her behalf, but this approach is not without its problems as the litigation friend will themselves exercise discretionary control over access to any remedies, which again, is problematic under ECHR case law. In short, it is not totally unlawful under the ECHR for proceedings of this nature to take place without the person being notified, but it is a very serious thing, with many human rights issues to consider. Again, for this reason, if the allegations that she were not notified are true I think the Court should have published the judgment to demonstrate how these matters were managed.<br />
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One last risk of proceedings where a person is kept in the dark about them, is that the proceedings themselves can be experienced as an injustice, can alienate a person not only from those delivering the intervention but also the system of justice in place in a country. An approach known as ‘therapeutic jurisprudence’ emphasises how important it is that a person plays a role in cases which concern them, that they feel their voice is heard, for their own recovery. Proceedings where a person is deliberately excluded can carry risks of their own to the person’s recovery.<br />
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Questions also remain about the family court proceedings regarding the baby, once it was delivered. Not being a family law specialist, I don’t feel equipped to comment on those. Whatever one thinks of the outcome of the decisions of the health trust, the local authority and the courts, I doubt they are decisions that anybody took lightly. What is clear, is that whatever the legalities, this entire experience will have been <i>extremely</i> distressing to the mother. Whilst I think that it is important that the public know if the Court is exercising powers of this nature, and in this way, I do hope the resultant media storm is not exacerbating what must already be a very distressing time to the mother. Our thoughts are with her.<br />
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[Update: A judgment from Chelmsford County Court regarding the child has <a href="http://www.bailii.org/ew/cases/Misc/2013/20.html">now been published</a>. This sheds little more light on the Court of Protection proceedings, although it does appear that the local authority were listed as respondents to the case, even if they did not make the application. The judgment is very critical of the claim that she <i>had regained </i>capacity, and of the doctors for letting her return to Italy as this diminished the chance of being reuinited with her child (although how the doctors could stop her on these grounds I don't know!)]</div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com14tag:blogger.com,1999:blog-7327718065135964598.post-29194013200245899972013-11-28T14:53:00.000+00:002013-11-29T10:14:20.869+00:00The Ombudsmen find maladministration causing injustice in a case involving the deprivation of liberty safeguards<div dir="ltr" style="text-align: left;" trbidi="on">
One of the recurring themes that has come up before the <a href="http://www.parliament.uk/business/committees/committees-a-z/lords-select/mental-capacity-act-2005/">House of Lords Select Committee on the Mental Capacity Act 2005</a> (MCA) is a lack of redress for non-compliance with the MCA and the deprivation of liberty safeguards (DOLS). The Lords have asked on several occasions whether there is a need for a 'bigger stick'. A fortnight ago, <a href="http://www.irwinmitchell.com/our-people/alex-rook">Alex Rook from Irwin Mitchell Solicitors</a> <a href="http://www.parliament.uk/documents/Mental-Capacity-Act-2005/ucMCA121113ev12.pdf">told the Committee </a>that part of the problem is that:<br />
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...the Court of Protection is ...a forward-looking court, which is generally a good thing. When you come to the court, the question before it is: what is in this person’s best interests? The court is often described as being inquisitorial rather than adversarial. You do not win or lose: you just establish what is in this person’s best interests. That almost acts as a disincentive to look at what has happened in order to get there in the first place. I am sure as well, partly due to resources and time, that the court is quite often quite reluctant to look at what has gone wrong rather than at how we solve it. That is perhaps in contrast to a lot of other civil proceedings, where you are generally looking backwards and saying, “What has happened there? Was it right or was it wrong?”.</blockquote>
He gave an example of a case where this was an issue:<br />
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...we acted for an elderly lady who went from her own home into hospital and was then moved from hospital into a care home. Then, once she was in the care home, her authorisation of the deprivation of liberty was made. That was plainly too late. The court tends to say that is too late to express some disappointment at that, but it does not go much further, because the court is actually looking at the primary question: should she be in that care home or should she go home? There is not really emphasis in the court to actually look at that; non-compliance has already taken place, if that makes sense. </blockquote>
As Elmari Bishop said, <a href="http://www.parliament.uk/documents/Mental-Capacity-Act-2005/ucMCA121113ev12.pdf">in her evidence to the Committee</a>, there need to be both internal drivers (better training, management buy-in, support of front line workers) and external drivers (penalties for non-compliance) to improve compliance with the MCA and the DOLS. Yet these often appear few and far between. This is especially the case in relation to judicial remedies for compensation such as a claim under the Human Rights Act 1998 or for a declaration of past unlawful action in the Court of Protection, in no small part because of difficulties with legal aid (in Alex Rook's evidence he gives a very cogent explanation of this problem).<br />
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There are growing signs of CQC inspectors taking action in relation to non-compliance with the MCA and the DOLS, although there is a great deal of work to be done to improve the understanding of their own staff (as David Behan said in <a href="http://www.parliament.uk/documents/Mental-Capacity-Act-2005/ucMCA291013ev10.pdf">his evidence to the Committee</a>). As <a href="http://thesmallplaces.blogspot.co.uk/2012/06/local-government-ombudsman-can.html">I've written before, </a>another potential avenue for redress of past non-compliance is the Ombudsmen. The Ombudsmen have a somewhat wider remit than the Courts, as their task is to examine maladministration. This week the Local Government Ombudsman and the Parliamentary and Health Services Ombudsman has <a href="http://www.lgo.org.uk/news/2013/nov/south-yorkshire-family-excluded-care-planning-elderly-relatives/">published a finding of maladministration </a>in relation to a case which involved the use of DoLS, involving an NHS Trust and the local authority. Thanks very much to Akib Qadir for sending me the link.</div>
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The case concerned a couple (Mr and Mrs X) and their son (Dr X). Mr and Mrs X both had dementia, and their son - Dr X - had arranged home care for them. The professionals involved had concerns about this care, but instead of clearly communicating that to him they held a 'professionals only' meeting where they decided that Mr X would not be allowed to return home and to apply for an authorisation under the deprivation of liberty safeguards to that effect. Dr X was very distressed about this decision and the failure to communicate clearly to him their concerns about the care which had had arranged. Later on, his mother was sent a report which communicated a decision that she too should live in a care home - separately from her husband - which caused her great distress. The focus of the Ombudsmen's findings was the communication breakdown between professionals and Dr X, the decision to exclude him from meetings where decisions were being made, and the resultant injustice upon his parents who endured a period of time with inadequate care: 'They suffered a needless loss of dignity during that time.' One of the important lessons from the case was that practitioners with concerns about the exclusion of family must be prepared to challenge that practice, even if it means standing up to medical practitioners (another recurring theme in the House of Lords Select Committee evidence is the difficulty non-medical practitioners have in standing up to medical practitioners where they do not comply with the MCA and jump to conclusions about capacity and best interests or exclude the person and their family).</div>
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The case itself, although interesting, carries no new lesson which public authorities should not have already learned from <i><a href="http://www.bailii.org/ew/cases/EWHC/COP/2011/1377.html">Neary</a> </i>about clear communication and involvement with families in care planning decisions. Unlike the <i>Neary </i>case, the end result appears to be that Mr and Mrs X did not remain in their preferred living arrangement, and there is little discussion about the actual end result. Presumably this is because it did not form part of the complaint, but also because if the concern is with <i>present </i>arrangements the Court - with it's powers to make declarations as to capacity and best interests - would be a more appropriate forum. But it is heartening to see that the Ombudsmen are prepared to look at issues which the Court may not, about past wrongdoing, as this may provide another critical external driver for improving practice.</div>
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Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com1tag:blogger.com,1999:blog-7327718065135964598.post-23998778288532218272013-11-27T16:01:00.002+00:002013-11-27T16:01:48.362+00:00Call for papers: SLSA Annual Conference Mental Health and Mental Capacity Law stream<div dir="ltr" style="text-align: left;" trbidi="on">
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Every year the <a href="http://www.slsa.ac.uk/content/view/179/">Socio-Legal Studies Association</a> holds an annual conference, with a fantastic stream on Mental Health and Mental Capacity Law (co-ordinated by Peter Bartlett). It's one of my favourite conferences, and is attractive to people from a range of backgrounds, not just legal, as the papers use many different methodologies and it touches upon many issues of broader policy and critical relevance.</div>
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The <a href="http://www.rgu.ac.uk/about/faculties-schools-and-departments/aberdeen-business-school/the-law-school/slsa-conference-2014/slsa-2014">call for papers for the 2014 annual conference </a>has opened. As the call points out, this could be a very interesting year:<br />
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This years Socio-Legal Studies Association Annual Conference is to be held at Robert Gordon University, Aberdeen.</blockquote>
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Initial Deadline for submissions: 27 January 2014</blockquote>
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The past year has been a lively one for those interested in mental health and mental capacity law. The Supreme Court has made its first decision interpreting the Mental Capacity Act 2005 (and presumably its decision on the meaning of ‘deprivation of liberty’ will be handed down before the Conference). The Court of Protection continues to cut new ground, most notably in areas relating to best interests. We continue to see the results of how the Scots legislation and the Mental Health Act 2007 south of the border, are working in practice (CTOs, anyone?). At the international level, it is increasingly clear that the UN Convention on the Rights of Persons with Disabilities is changing what is expected of mental health and mental capacity law.</blockquote>
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While these legal developments provide a particularly apt occasion for the stream, papers from all areas of the law relating to mental health, mental capacity and mental disability are welcome, including:<br />• Civil, criminal or informal mechanisms of control, in hospital or in the community<br />• The law relating to incapacity benefits, and other issues relating to care and programmes in the community;<br />• Issues relating to discrimination on the basis of mental disability (be it mental health issues, psychosocial disabilities, or learning disabilities)<br />• International law relating to people with mental disabilities;<br />• The role of administration or care-givers in the provision of services;<br />• The role or experience of service users in mental health care.</blockquote>
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We impose no restriction on methodology: papers may be empirical, policy-centred, historical, analytic, traditional legal, or theoretical, in approach.</blockquote>
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The SLSA is an interdisciplinary organization, and papers are welcome from any academic background, and from people at any stage of their career.</blockquote>
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The stream co-ordinator is also happy to consider joint sessions with other streams in the conference where appropriate.</blockquote>
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Please feel free to circulate this call for papers to interested scholars and other interested persons working in any discipline related to law and mental disability.</blockquote>
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The stream co-ordinator is Peter Bartlett (<a href="mailto:peter.bartlett@nottingham.ac.uk">peter.bartlett@nottingham.ac.uk</a>). Please feel free to contact him with enquiries about the stream. Proposals for papers should be submitted online through <a href="http://www.rgu.ac.uk/about/faculties-schools-and-departments/aberdeen-business-school/the-law-school/slsa-conference-2014/slsa-2014">the conference website.</a></blockquote>
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About the conference</blockquote>
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The Socio-Legal Studies Conference occurs annually, in 2014 at the Department of Law at Robert Gordon University, Aberdeen. It is among the major socio-legal studies conferences internationally, attracting a wide variety of scholars, and subject streams within the conference span the range of topics in socio-legal studies.</blockquote>
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All attendees (including presenters) must register for the conference and pay the required attendance fee. Reduced rates are available prior to 7 February 2014, and also for students andSLSA members. Scholarships are also available for students. For more information, see <a href="http://www.rgu.ac.uk/about/faculties-schools-and-departments/aberdeen-business-school/the-law-school/slsa-conference-2014/slsa-2014">the conference web site.</a></blockquote>
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Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-75398277005825040992013-11-25T11:11:00.003+00:002013-11-25T11:12:00.459+00:00Postcode lottery in DoLS review mechanism<div dir="ltr" style="text-align: left;" trbidi="on">
Under the Mental Capacity Act 2005 deprivation of liberty safeguards (DoLS) an authorisation to detain a person is subject to a review process. The DoLS are administered by supervisory body - these are local authorities, but in the past they were also PCTs (before these were abolished). The supervisory body is responsible for authorising the detention in the first place. They may also conduct a review at any time to ensure that the qualifying requirements for detention under the DoLS are still met. The managing authority (the care home or hospital which the person is detained in) must request a review if it appears to them that the person may no longer meet the qualifying requirements for detention under the DoLS, or the reasons why they meet the qualifying requirements may have changed. A review may also be requested by the relevant person themselves or their representative.<br />
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<a href="http://thesmallplaces.blogspot.co.uk/2013/09/what-do-part-8-reviews-under-dols.html">I wrote a while ago </a>about why this review process was never intended to replace the independent review by the Court of Protection, as it is not a review by an independent judicial body but by the self-same body that authorised the detention in the first place. Nevertheless, the review process can be very important for ensuring that the supervisory body monitors the relevant person's situation. In some cases it might help to resolve issues or disputes - although, it cannot be a substitute for going to court if the relevant person remains detained and they, or their representative, are objecting to their detention. The Health and Social Care Information Centre (HSCIC) collect data on the DoLS annually, including data on reviews, but they have not published the review data before. I requested this data under the Freedom of Information Act 2000 and <a href="http://thesmallplaces.blogspot.co.uk/2013/09/what-do-part-8-reviews-under-dols.html">back in September </a>they released to me the aggregate data on reviews, which showed that overall the number of reviews was pretty low in comparison to the number of authorisations, and that reviews were only very rarely triggered by the detainee or their representative.<br />
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The HSCIC have now released this data broken down by individual supervisory body (<a href="https://www.whatdotheyknow.com/request/information_on_the_dols#incoming-452421">here</a>). I have matched the review data for local authorities to the number of authorisations, to look at how closely these are related to each other:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbkAQz1dhpsr2KOc406_72yVMoLIJuaG4BIL1DGv5kUHqu1vZF1alrpYKBWhw8nlvPzzeeb3DYnSxFJFmF7KnZZvlyCESIaA_o7pRA2SV_yk7a0rMra-pjUcri95wrHCKkFz0xzlbssRs/s1600/2013+11+25+Auth+and+Rev+data+by+LA+2012-13.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbkAQz1dhpsr2KOc406_72yVMoLIJuaG4BIL1DGv5kUHqu1vZF1alrpYKBWhw8nlvPzzeeb3DYnSxFJFmF7KnZZvlyCESIaA_o7pRA2SV_yk7a0rMra-pjUcri95wrHCKkFz0xzlbssRs/s1600/2013+11+25+Auth+and+Rev+data+by+LA+2012-13.jpg" /></a></div>
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The data reveal only a moderate correlation (coefficient = 0.52) between the number of authorisations and the number of reviews. There are some eyebrow-raising outliers in the data - some local authorities have very large numbers of authorisations, but very few reviews (for example, one local authority with 117 authorisations had only 3 reviews), meanwhile some local authorities have a huge number of reviews in comparison with the number of authorisations (one local authority had 16 reviews for only 2 authorisations).<br />
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Given the general pattern variable use of the DoLS, it is hardly surprising to find a bit of a postcode lottery in relation to reviews, but what do these data actually mean? Should supervisory bodies be aiming for high or low review rates? Answering that question is not especially straightforward. What we are, at base, interested in is making sure that a person's situation is regularly monitored to keep track of changes, and ensuring that a review is conducted whenever a person's situation changes. The trouble is, the data don't allow us to pick into several important variables. <br />
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High rates of reviews <i>may </i>mean that managing authorities and supervisory bodies are keeping on top of these changes and reviewing where appropriate; but low rates of reviews do not necessarily mean that they are not. This is because some supervisory bodies may prefer to keep on top of possible changes in a person's situation by issuing only short term authorisations, and re-assessing to see whether to extend the original authorisation. This could account for supervisory bodies with very high rates of authorisations but only a few reviews. Anecdotally, some supervisory bodies do this to keep up pressure on managing authorities (and indirectly commissioners) to resolve problems with a person's care plan which may mean that the detention is not in their best interests. A short authorisation <i>forces </i>the supervisory body to go back and conduct a new assessment, and raises the spectre that unless there are changes the authorisation may not be renewed. By contrast, a review relies upon the supervisory body later on exercising their discretion to conduct one or waiting for a referral from the managing authority or relevant person or their representative. What we really need, to disentangle these issues, is supervisory body level data on the average <i>duration </i>of authorisations and/or the number of authorisations per person.<br />
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Likewise, it is hard to know whether we want to see a high rate of requests for reviews by the relevant person or their representative. On the one hand, it is their right to request a review - and if it is being regularly exercised then that suggests that they are able to understand and exercise that right. On the other hand, if the managing authority and the supervisory body are keeping on top of monitoring what is going on, then the relevant person and their representative should not need to request reviews themselves.<br />
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As ever with DoLS, it is very hard to dig beneath the data to see what exactly is going on. What we can say is that supervisory bodies seem to be applying the review process in differing ways. This may reflect the use of different strategies to monitor a person's situation (use of short term authorisations v regular reviews), or it may reflect individual differences in whether they are monitoring appropriately at all.</div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-82632221241690897652013-11-11T17:28:00.000+00:002013-11-12T14:15:24.677+00:00Fighting fund for LB<div dir="ltr" style="text-align: left;" trbidi="on">
The post I wrote about <a href="http://thesmallplaces.blogspot.co.uk/2013/07/lb.html">the death of LB</a>, Sara's son, in an assessment and treatment unit for people with learning disabilities, is one of the most read posts from this year.<br />
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Sara's fight for justice for LB, for an independent investigation into his death, is ongoing and has had several twists and turns. At one point the family were refused <a href="http://mydaftlife.wordpress.com/2013/10/22/when-is-an-advocate-not-an-advocate/">the advocate of their choice </a>(indeed any advocate) in the investigation process, but <a href="http://mydaftlife.wordpress.com/2013/10/24/fran-is-back/">this decision was eventually reversed</a>. The family came across <a href="http://clinical%20commissioning%20group%E2%80%99s%20quality%20and%20performance%20report/">a recent Clinical Commissioning Group’s Quality and Performance Report report</a> on the unit which raised concerns about the way serious incidents requiring investigation (SIRIs) were investigated. However, the Trust have now commissioned an <a href="http://mydaftlife.wordpress.com/2013/11/06/relief-and-charades/">independent investigation</a>, much to the family's relief.<br />
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There will be an inquest into LB's death, and the family would like legal representation, in their words 'to find out exactly why LB died, and what changes should be made to ensure that no other dudes experience what he experienced.' This costs a great deal of money, however, and as the family point out it is so unfair that 'Our son died, in the ‘care’ of the state, and we have to pay. Another example of a stinking system'. Although they are receiving some pro bono support, it is not enough to cover the costs in full. So they are looking to raise £10,000 towards the cost of legal representation. If you would like to contribute, you can read more about the fighting fund for LB <a href="http://mydaftlife.wordpress.com/2013/11/09/lbs-fighting-fund/">here</a>, and <a href="http://sarasiobhan.wordpress.com/fundraising/">here is the fundraising page</a>. You can make a donation, and/or order some cards or prints of pictures by LB, including this beautiful picture of a bus:.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRw3pHAwcFcIai7_7mGPtF7xs4zUETjBYKAOVE0tVTf0zbHe6hwZSPPAOQLk2VL4a8M6NrP0UpXjvEmKcfcoZq6LaKunkjsGWHH6sFfKavMcjBBTf0wJPP8BVsH4g_ZQZ-0ne0aWbWSm0/s1600/LB+-+bus.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="274" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRw3pHAwcFcIai7_7mGPtF7xs4zUETjBYKAOVE0tVTf0zbHe6hwZSPPAOQLk2VL4a8M6NrP0UpXjvEmKcfcoZq6LaKunkjsGWHH6sFfKavMcjBBTf0wJPP8BVsH4g_ZQZ-0ne0aWbWSm0/s400/LB+-+bus.jpg" width="400" /></a></div>
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One last story about the guy we're fighting for, my personal favourite - LB and <a href="http://mydaftlife.wordpress.com/2011/10/04/lb-and-the-failed-kebab/">the failed kebab</a>:<br />
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“Hey LB! How did meal prep go today?”<br />
“Not good Mum.”<br />
“Oh. Why not?”<br />
“I failed Mum.”<br />
“Whaddayamean, you failed?”<br />
“I failed Mum.”<br />
“Why? What did you cook?”<br />
“Kebabs Mum.”<br />
“Oh, I don’t get it. What went wrong?”<br />
“I didn’t have a skewer Mum.”<br />
“Oh. Why not?”<br />
“Dunno Mum.”<br />
“So what did you eat for lunch?”<br />
“Bits Mum."</blockquote>
If anyone has any fundraising ideas for LB that they'd like to publicise on this blog, drop me an email.</div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com2tag:blogger.com,1999:blog-7327718065135964598.post-89330458561196397192013-11-11T14:43:00.001+00:002013-11-26T09:01:31.634+00:00Judicial review of decision to close the Independent Living Fund succeeds<div dir="ltr" style="text-align: left;" trbidi="on">
Apologies for this fleeting post, but I wanted to bring to people's attention the Court of Appeal's decision in <a href="http://www.bailii.org/ew/cases/EWCA/Civ/2013/1345.html" style="font-style: italic;">Bracking & Others v Secretary of State for Work and Pensions</a>. The Court of Appeal found that the decision to close the Independent Living Fund did not have sufficient regard to the impact it would have on people with disabilities. The Court quashed the decision, and the government (unless it successfully appeals this decision) must make the decision again. Of course, they may decide - after another consultation process - to make the same decision, but this ruling makes clear that they cannot do so without really acknowledging the impact it will have on the lives of people using the Fund.<br />
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A statement by the appellants - Anne Pridmore, Gabriel Pepper and Stuart Bracking - follows below, but you might also find it interesting to read what others have written. <a href="http://makingrightsmakesense.wordpress.com/2013/11/08/when-equality-impact-is-just-too-damaging-to-acknowledge/">Neil Crowther </a>discusses the role of the Public Sector Equality Duty in the judgment, and <a href="http://arbitraryc.wordpress.com/2013/11/06/should-the-ilf-close-yes-but/">Rich Watts </a>argues that if the ILF closes we should retain its better parts (which the government's impugned approach would not have). A legal briefing by Deighton Pierce Glynn solicitors is available <a href="http://www.deightonpierceglynn.co.uk/news/news_docs/536648%20ILF%20appeal%20legal%20briefing%20note%20LW%20Nov%202013.pdf">here (pdf)</a>. Disabled People Against the Cuts have begun an Independent Living Rights newsletter (<a href="http://dpac.uk.net/2013/11/independent-living-rights-news-17-november-2013/">edition 1</a>, <a href="http://dpac.uk.net/2013/11/independent-living-rights-news-edition-2/">edition 2</a>).<br />
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Meanwhile, the marvellous <a href="http://www.touretteshero.com/2013/11/06/the-right-to-an-active-life/">Tourette's Hero </a>(whose blog you really should read - it will brighten your day and generally make your life a better place) has written about what inability to access ILF means to them:</div>
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My quality of life should not be dependent on the sort of friends and family I have, but at the moment it is. I do not have equal access to a full life (though I might well have done had my tics got worse a year or two earlier) and the extent to which I’m able to live in my community is very largely dependent on the community of friends who make this possible. I’m extremely thankful for them, but even so I don’t always choose how I spend my time, I have to negotiate it.</blockquote>
<b>Statement by Anne Pridmore, Gabriel Pepper and Stuart Bracking</b><br />
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<i>As three of the Independent Living Fund users who have challenged the legality of the government’s decision to close the Fund, we welcome the Appeal Court’s unanimous ruling that this decision should be quashed.<br /><br />Given the Government has decided not to appeal to the Supreme Court, the new Disabled People’s Minister Mike Penning will now have to reconsider the Government's approach to the future of the Independent Living Fund and its users.<br /><br />Rather than being the ‘privileged group’ referred to in the High Court judgement, the Appeal Court has acknowledged the potentially very grave impact the closure of the Fund would have on its users, putting seriously in peril the ability of a large number of people to live independent lives in their own homes, and pursue activities such as employment and education.<br /><br />They concluded that when Disabled People’s Minister Esther McVey made her decision in 2012 to finally close the Fund by April 2015, she did not properly consider the need to advance our equality of opportunity, minimise the disadvantage we face, encourage independent living, and promote our participation in public life and other social activities.<br /><br />For a generation, the Independent Living Fund has provided funding to support disabled people with complex conditions who need personal assistance to live in the community.<br /><br />Twenty years ago, Disabled People's Minister Nicholas Scott who founded the Fund in 1988 explained its importance to the House of Commons (25/2/1993): "It has helped those severely disabled people who did not want to go into residential care but who could not live in the community without a considerable degree of domiciliary support to maintain their independence. That is something that we can all applaud and welcome." This is as true today as it was then.<br /><br />In the same speech, Nicholas Scott also acknowledged there were limits to the financial support local authority social services could provide some disabled people: "If it is necessary for extra help to be provided....it will be open to the social worker who assesses the needs of disabled people to say, 'We can provide services up to this level but we believe that a further level of care is necessary,' and then to turn to the Independent Living Fund."<br /><br />The Independent Living Fund has provided a platform for social opportunities to be pursued by severely disabled people in large numbers for the first time in history.<br /><br />The careers, family life, friendships, social activities and roles people have built for themselves could be undermined and in many cases dismantled if the Fund closes.<br /><br />Although the Appeal Court ruled the consultation which preceded Esther McVey’s closure decision was lawful, we believe there is now an opportunity to reflect on our society’s responsibilities towards those who rely on the welfare state to keep them safe, healthy and free of distress.<br /><br />Last year, 2000 individuals and organisations responded to this consultation, but the Court of Appeal held the real substance of the consultation responses were not conveyed to Disabled People's Minister Esther McVey. An opportunity for an open, democratic debate was lost.<br /><br />By responding to the World Health Organisation’s recommendation in the World Report on Disability that countries should provide services in the community and not in residential institutions or segregated settings and plan how to achieve this, the human and civil rights of disabled people of all ages could be respected, not just those of Independent Living Fund users<br /><br />Until a decision is taken to save the Independent Living Fund and open it to new applicants with adequate funding to meet people’s individually assessed needs, the fear many disabled people have expressed about their future will not disappear.<br /><br />This fear stems from an understanding of the impact limited support in the community will have on people’s life chances, or for some of us the low standards and rigid approaches to personal care found in residential and nursing homes which place people at risk of skin conditions, sores and sepsis.<br /><br />Many Independent Living Fund users are also acutely aware that, as long-term employers of personal assistants, if they are forced into residential care their knowledge of the law and care standards will bring them into collision with poor management and abusive cultures where they exist.<br /><br />There is also a significant risk for people with learning difficulties and/or autism of physical and emotional abuse in segregated settings where restraint and drugs are used to control behaviour that is defined as ‘challenging’ rather than being approached with patience, compassion and kindness.<br /><br />The fear of residential care that exists among Independent Living Fund users with ‘round-the-clock’ needs also exists among large layers of the general public.<br /><br />When reconsidering the Government’s approach to the future of the Independent Living Fund, the new Disabled People’s Minister Mike Penning could give the Fund a long-term future under the democratic control of its users, but also commit the Government to respect existing rights to an individual assessment of need.<br /><br />His Government could give disabled people of all ages the right to live in the community throughout their lives with the personal assistance and professional services they need, rather than the artificial and segregated environments found in residential care.<br /><br />We urge Mike Penning to grasp this opportunity and remove the uncertainty many thousands of severely disabled people and their families have experienced for several years.<br /><br />We would like to express our sincerest thanks to: our fellow claimants Paris L’amour and John Aspinall and his parents Evonne and Paul Taylforth; the tireless work of solicitors Louise Whitfield of Deighton Pierce Glynn, Kate Whittaker and Diane Astin of Scott-Moncrieff and Associates, and our barrister Mr David Wolfe QC; the supportive intervention of the Equality and Human Rights Commission; and Independent Living Fund user Kevin Caulfield’s networking and guidance during the case.<br /><br />We also acknowledge those Independent Living Fund users who have highlighted the impact closure would have on their lives, particularly Penny Pepper, Sophie Partridge and Mary Laver, which is not easy given the privacy most Independent Living Fund users and their families strive for.<br /><br />We would also like to thank: Disabled People Against Cuts and Inclusion London for the campaign coordinated by Linda Burnip, Debbie Jolly, Tracey Lazard and Ellen Clifford; other users of the Fund and disabled activists who have attended protests and vigils and supported the campaign; the two thousand organisations and largely anonymous individuals who responded to the Independent Living Fund consultation a year ago; the support of the PCS union and the workers at the Independent Living Fund; our personal assistants; the work of campaigning journalist Kate Belgrave; and the consistent reporting of this issue by John Pring at the Disability News Service.<br /><br />The future is ours to shape, but only if the personal assistance we need is present.</i></div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com0tag:blogger.com,1999:blog-7327718065135964598.post-86086680553775713752013-11-05T10:07:00.001+00:002013-11-05T10:14:39.041+00:00Detained patients' awareness of the mental health tribunal<div dir="ltr" style="text-align: left;" trbidi="on">
Hot on the heels of the judgment in <a href="http://thesmallplaces.blogspot.co.uk/2013/10/mh-v-uk-implications-for-deprivation-of.html">MH v UK</a>, which found that there are positive obligations to enable a person to exercise their right to bring proceedings to seek a review of the lawfulness of their detention where they would be unable to do so without assistance, a new study has examined how many patients who are detained under the Mental Health Act 1983 might fall into this category. The study is by Nuwan Galappathie, Rajendra Kumar Harsh, Mathew Thomas, Amina Begum and Danielle Kelly, and is published in <a href="http://pb.rcpsych.org/content/37/11/363.short">The Psychiatrist</a> (paywall, sorry, but you can still read the abstract). The study looked at patients in a secure hospital, and the results may vary across other types of hospital, but it found that 78% of patients were aware of the Tribunal's power to discharge (far fewer were aware of its powers to recommend leave or transfers). It found that patient's who understood the Tribunal's powers received more completed hearings per year, both overall and by patient's application. This means that the mechanisms to make a referral to a Tribunal on behalf of a patient are not compensating for the patient's inability to exercise that right himself.<br />
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Another finding was that very few patients understood that the Tribunal was independent. The authors' hypothesised that lack of awareness of the Tribunal's independent status may discourage detainees from making an application. <br />
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The authors recommended that hospital managers consider the capacity to patient's to make an application to the Tribunal, and consider referring cases to the Secretary of State (for a Tribunal referral) every 12 months. The paper does not discuss the ruling in <i>MH v UK </i>(no doubt because it was written before the judgment came out), but clearly this advice would be strengthened by that ruling. </div>
Lucy Serieshttp://www.blogger.com/profile/07820866715125284389noreply@blogger.com2