In 1948 we abolished the Poor Law, requiring people to support their relatives on their own or face “indoor relief”, but you wouldn’t realise it talking to many carers. I have lost count of the number of times I have met – or heard of – carers who believe they have a stark choice: either continue to provide care that is draining your own health and reserves, or your loved one will be removed from the home and placed in residential care. I have met carers who provide support virtually round the clock who just need a little more support to keep going – perhaps a few more hours a week, perhaps a holiday once a year – who have been given the impression that if they ask for more help, if they make a fuss, they will be recorded as “unable to cope” and their loved one will be removed. Or, even sadder still, carers who have given up begging for vital support and who feel the only option available to them now is to give up their caring role altogether and concede that they cannot cope.
On the occasions that I meet these carers, I quote Lord Justice Munby – that when it comes to removing a person who lacks capacity from the family home, against the wishes of carers, the local authority have no powers ‘to regulate, control, compel, restrain, confine or coerce. They are concerned with the provision of services and support’ (A Local Authority v A, 2010). I tell them that any such attempt would require an application to the Court of Protection, and then I recite the oft-quoted passage from Re S (Adult Patient) (Inhererent Jurisdiction: Family Life)  EWHC 2278 (Fam):
We have to be conscious of the limited ability of public authorities to improve on nature. We need to be careful not to embark upon 'social engineering'. And we should not lightly interfere with family life... And common sense surely indicates that the longer a vulnerable adult's partner, family or carer have looked after her without the State having perceived the need for its intervention, the more carefully must any proposals for intervention be scrutinised and the more cautious the court should be before accepting too readily the assertion that the State can do better than the partner, family or carer.
The Court of Protection looks favourably upon family life. One might almost say that Article 8 ECHR is the lifeblood of the Court of Protection. A recently published case, A London Local Authority v JH, has robustly reaffirmed that principle. But it also brought up interesting issues around the intersection of ‘best interests’ and public law.
In this case the court considered an application by a local authority for a declaration that Mrs JH lacked capacity to decide where she should live, and it was in her best interests to be discharged from hospital (following a stroke) to a nursing home. The application was opposed by Mr H – JH’s husband of over 30 years – who wished to care for her at home as he had before she had had a second stroke. The backdrop to this case was that although Mrs JH had previously been eligible for continuing care funding for 63 hours of support per week to live at home with her husband, despite having had a second stroke the NHS no longer considered her eligible for more support. The local authority were only willing to provide 52 hours of support per week. Mr H wanted 24 hours of respite care per week to support him as Mrs H’s primary carer; the local authority would only offer 3 hours of support. He also felt that she needed the 63 hours of support she originally had, and considered that the proposed package of support would not give him sufficient time where he could leave Mrs H’s side to do things like shopping, paying bills, and attending medical appointments concerning his own poor health. He felt the times of support were inappropriate, and had experienced problems with the reliability of carers and professionals in the past. The local authority maintained that there were risks attached to her returning to live in her own home – not due to any deficiencies in the package of care they had offered, but because Mr H would not co-operate.
This raises a widespread issue in community care – a person is offered a package of care which they or their carers regard as deficient in certain respects. A refusal to accept the package as a whole, or certain aspects of the package, means the person or their carer can often be labelled ‘uncooperative’ or ‘troublesome’. I have to say, having worked in social care, I am not entirely surprised when people reject packages of care, or are short tempered or even rude with care staff and professionals at times. Sometimes they are being offered a very raw deal indeed. Homecare, I suggest, is particularly rife with potential for conflict: conflicts over which carers are sent, when they are sent, how respectful they are of the family home, and how skilled they are at their work. The Equality and Human Rights Commission in their press release on their homecare inquiry noted issues around continuity of care – they heard of a woman who had had 32 carers in a two-week period. I have witnessed cases even worse than that myself.
Poor continuity of care can runs serious risks from a health and safety perspective: issues that require ongoing supervision go unnoticed; medication muddles are common; staff unused to equipment risk breaking it or injuring service users. And from an interpersonal perspective it is disastrous. The person themselves and the carer has no idea who is coming to their house each day – no wonder, in this case, the husband was reluctant to give carers a key! A person with care needs is left to be handled by strangers, as if they – and their carers – were fungible entries in a database, rather than real people, with real needs for human relationships and privacy as far as possible. The privacy of the home is breached by the necessity to give ready access to an army of strangers; carers and service users may experience anxiety over whether the carers that are sent will have the requisite skills. A person must submit to their body being touched by whoever the care agency sees fit to send, regardless of whether that person is known or trusted by them, or go without their needs being met.
The timing of times of visits by domiciliary care providers – as in this case – are often determined more with organisational efficiencies in mind that the individual’s needs and preferences. Despite Mr H and Mrs H being a couple who preferred to go to bed late and get up late, the local authority were insistent on sending carers early to give her breakfast. The moralising tone of the Occupational Therapist sounds more like something out of Sue Barton District Nurse than a professional working in a person-centred age:
Mrs H’s “eating pattern at home was not following a usual pattern of breakfast in the morning, mid-day lunch and a mid evening dinner … She told me that she would wake very late in the morning, not having had her first meal often till mid-day.” Her last meal would be around 11.00pm.
There are – I am sure – many local authorities and care providers who would show greater sensitivity to a person’s own rhythms and preferences. Who would strive to ensure preferred carers are sent, but I suspect when we see the EHRC report on homecare we will find problems of this nature are widespread. And although in this case, with the chiding of the court, Mr and Mrs H may be offered the times they want – as someone who used to compile homecare rotas I confirm it is virtually impossible to give everyone the times and carers they want without an agency taking on more staff. Pressure on early morning and late night slots is very intense, and it is far cheaper to leave people lying in bed for longer, or put them to bed earlier, than pay the overheads of recruiting, employing and training more staff. Giving people a choice is an unfathomably hard logical problem, not something easily achieved during the ongoing crisis management exercise that occurs in most care provider offices. The local authority are not always directly complicit in this, of course, but without offering better hourly rates care providers are unlikely to be able to take on sufficient staff to address these issues.
Not much better, it has to be said, was the level of reliability and continuity of care offered by professionals themselves in this case. Evidently fed up by moralising from professionals who he felt barely knew them, Mr H said:
The professionals involved have come into our lives and instead of trying to understand us they have tried to impose their thoughts about JH's care on us. These people will come and go, there will be different carers, social workers and district nurses that will come and go from our lives, but we are each others constants. We are husband and wife and this is our life, this is not work, not something we will be involved in for a few months here and there before we move onto a new client but it is our life and the outcome of theses proceedings have the ability to break up a loving family because we are considered to be difficult. I am made out to be causing harm to my wife, this is simply not true. The care I provide to my wife stems from the love and respect I have for her and the wish for her to be happy. The care I give her is not because I am being paid to do it.
For the failure to submit to a package of care that was not attentive to their personal preferences and privacy, for daring to ask for more help for him and his wife, for the temerity to suggest he knew his wife better than professionals, Mr H was labelled ‘difficult’ and ‘uncooperative’. For all these things, he was considered to be someone who posed such a danger to his wife’s wellbeing she should be deprived of her liberty and placed in a nursing home, against her consistently expressed views and against his. I don’t claim to know that Mr H was an easy man (he says himself he was stubborn), or that he was always sensitive to the demands placed on professionals in this case, but the point is that they were the professionals. They are in the business of social work, work with real human beings - not clockwork people who eat and sleep at hours ordained by them. Real human beings who want to retain a degree of control over who comes into their home, and when. The task of social care professionals is to support real people in their own lives, not to coerce and bully and threaten and label to fit an agenda of their own. Eldergill DJ had this to say:
When significant issues have been raised in court, time and again the local authority has told me that Mr H is not willing to compromise, rather than that neither of us will compromise. Of course, what they mean is that he is not willing to concede the relevant point and neither are they. Compromise, as opposed to concession or surrender, is an agreement that involves both parties giving up part of their preferred position in order to reach a working agreement... [The local authority] were not asking Mr H to compromise but to concede. In short, they were not willing to compromise their position.
The judge went on to find that Mr H had eventually compromised his position, but ‘the local authority has fairly resolutely refused to do’.
I am reminded of a comment in a recent Serious Case Review from Cornwall, where a woman was found dead in her bed having refused care from local social services. The SCR commented:
Good practice dictates it is for them to decide the pattern of services they need and want and the risks they wish to take in their lives. Everyone working with JK appears to have respected this either as a professional value, or because of their own powerlessness in the face of her apparent intransigence. But this sharing of power is complex. It is not about a “take it or leave it” strategy.
It is no real choice if it is between a package of care a person finds wholly unsuitable and offensive, that leaves a person feeling they have relinquished control over their lives, homes and bodies, or being left alone to die.
Nor, I would contend, was the court – as the proxy decision maker for Mrs H – left with a particularly attractive choice. I have to say, reading the case, I was very dubious that this assessment of her needs and package of care was valid, and I was more than a little surprised the Official Solicitor did not seem minded to challenge it by way of judicial review. I find it hard to see how the offer of 59 hours a week could have been viewed as a sustainable in any way if it did not permit Mrs H’s primary carer the time he needed to attend to his own health needs. Even if one sets aside Article 8, given the evidence of how her health and wellbeing would be likely to deteriorate if removed to a nursing home – it is hard to see how this unsustainable care plan would square with ‘Fair Access to Care Services’ (or ‘Prioritising need in the context of putting people first’). It seems to me that here is a carer saying “I am able to do only so much, can you help by meeting my wife’s eligible needs when I need to look after my own health and our household” – when Poor Law thinking descended on this local authority. Either Mr H submitted to being available to care for his wife all the hours they dictated, or else they remove her from his care altogether whatever the health and emotional consequences for her. However, the court has shown in this case that they are not prepared to be the local authority’s bogey man. Eldergill DJ commented:
In a nursing home, Mrs H would be separated from the most important person in her life, and from her home, and be distressed and unhappy. The main benefits would be being turned every three to four hours by two carers if and when she agreed to this, rather than sometimes by her husband alone; being hoisted by two carers on the rare occasions that she agreed to leave her bed, rather than sometimes by her husband alone; and having guaranteed nursing access, minimising the risk of infection and avoidable admissions for catheter care.
He affirmed the principle that Munby J once asked: ‘What good is it making someone safer if it merely makes them miserable?’