Preventable

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 Southern Health published the report of the independent investigation into the death of LB. That report found that LB’s death was preventable.

How does a young man drown in the bath in a hospital? 

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.

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:

'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.'

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.

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.

'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.'

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.’ 

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.’

A life, and death, like no other

LB’s death was preventable. Last year the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) study reported that 42% of deaths of people with learning disabilities are ‘premature’, defined as:

‘…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.’

Mencap called this phenomenon Death by Indifference. This is a national scandal, but we are not scandalized enough.

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 the CQC inspected the unit 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.’ 

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 Life Like No Other. In 2009 the CQC went back and re-inspected a sample of assessment and treatment units and found that many things had got worse. In 2012, after the Winterbourne View scandal broke, the CQC reported on a massive investigation into assessment and treatment units of people with learning disabilities. Margaret Flynn wrote a comprehensive Serious Case Review into what happened at Winterbourne View. So many themes, in all these reports, resonate with what happened to LB.

Restraint

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. Mind recently described 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.’

Exclusion of family

For many people with learning disabilities. For many people (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 Out of Sight, Mencap and the Challenging Behaviour Foundation wrote:

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.

The House of Lords Select Committee on the Mental Capacity Act 2005 has also heard evidence of the exclusion of family in decisions made by health and social care professionals.

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. 

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.

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.

Person-centred care?

Another theme of successive reports into the care of people with learning disabilities in assessment and treatment units – from A Life Like No Other 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.’

Clinical lead S3 described the Unit in the following terms to investigators:

“…effectively an assessment unit in a rather old-fashioned model akin to a generic psychiatric acute admissions ward.

“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.”

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.

Mental health and human rights law

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.

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.

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)?

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.

Discharge planning

One thing we know from the national reports mentioned above – and CQC’s annual reports on the MHA - 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 might have focussed minds on discharge planning with appropriate support.

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:

“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.”'

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.