Social work and end-of-life care

Social work is important in end-of-life care

Archive for the ‘long-term care’ Category

NHS competition regulator Monitor inadequately tries to show that competition and coordination go together

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140830 IntegrationCoordinating NHS and social services has been a policy and practice for decades, arising because if you coordinate everything into one organisation, you get an oversized blob. In any case, social services and the NHS have to be separated in some way, because the government would otherwise be forced by the political obligation to  provide health care to extend that to free social services, and they’re never going to do that. (You ask: why? Partly because of the cost but mainly because social care helps people with the problems of everyday living, not something exceptional and definable like an illness, and government doesn’t want to pay for what people would normally do for themselves, like getting up, getting bathed and getting fed).

Monitor, the NHS regulator which is supposed to ensure that competition works, is issuing a lot of guidance about coordination. The political reason for this is that they need to show that the competitive market that they promote does not prevent coordination. To do this, they have latched onto the idea of personalisation, or person-centred services: the idea is that services slot together around people’s needs, so they naturally coordinate.

So in its requirements of providers (a sort of contract that NHS providers are supposed to adhere to), it has an integrated care condition:

The Integrated Care Condition states that NHS provider licence holders should not do anything that could reasonably be regarded as detrimental to enabling integrated care. It also includes a patient interest test which means that the obligations only apply to the extent that they are in the interests of people who use healthcare services.

The problem is that the aim of removing barriers to coordination does not actively make it possible, and what NHS providers do is not the major barrier – lack of resources and options in service provision is. But the requirement not to do anything to the detriment of coordination provides a potential protest and advocacy point for people who want to change something that an NHS provider is doing.

Link to the Monitor Guidance, which also has lots of useful links to other documents on integration.


Written by Malcolm Payne

2 September 2014 at 1:26 pm

Deprivation of Liberty Safeguards: review the constraints and get external reviews

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More on the recent Supreme Court decisions on Deprivation of Liberties Safeguards; this legal commentary provides helpful guidance to local authorities, care home providers, hospices, hospitals and the like on how they should review their practice and decisions.

The helpful point is: ‘focus on the constraints’, not on the overall circumstances that a patient is in. And get independent external reviews done of long-standing arrangements; it is easy to get seduced by continuing with arrangements that seem to be working well.

Deprivation of liberty safeguards: “A gilded cage is still a cage” | Kennedys.

A gilded cage is still a cage – Supreme Court deprivation of liberties decision

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A Supreme Court decision on some of the most discussed of Deprivation of Liberties cases is now reported. A legal commentary indicates that these represent major changes in the DOLS law; the legal commentary suggests:

There are likely to be thousands of people who were not considered to be deprived of their liberty yesterday who will be today in light of this judgment.

It recommends that all local authorities and NHS organisations should review their caseloads; they will probably have to issue DOLS documentation in numerous cases where it was not thought necessary.

The judgement by the respected Lady Hale reviews the history of DOLS law in the UK and European Court of Human Rights decisions, some of which took place after previous lower courts in the UK had decided the cases in question here. It’s a very good primer on the existing law, and of course, as always with Lady Hale, very clearly written and calling on the original sources. No unnecessary legal jargon here.

Here are some useful quotations:

(at 34) People who lack the capacity to make (or implement) their own decisions about where to live may justifiably be deprived of their liberty in their own best interests. They may well be a good deal happier and better looked after if they are. But that does not mean that they have not been deprived of their liberty. We should not confuse the question of the quality of the arrangements which have been made with the question of whether these arrangements constitute a deprivation of liberty.

(at 35) …it is quite clear that a person may be deprived of his liberty without knowing it. An unconscious or sleeping person may not know that he has been locked in a cell, but he has still been deprived of his liberty. A mentally disordered person who has been kept in a cupboard under the stairs (a not uncommon occurrence in days gone by) may not appreciate that there is any alternative way to live, but he has still been deprived of his liberty. We do not have any difficulty in recognising these situations as a deprivation of liberty. We should not let the comparative benevolence of the living arrangements with which we are concerned blind us to their essential character if indeed that constitutes a deprivation of liberty.

(at 36) The whole point about human rights is their universal character. The rights set out in the European Convention are to be guaranteed to “everyone” (article 1). They are premised on the inherent dignity of all human beings whatever their frailty or flaws. The same philosophy underpins the United Nations Convention on the Rights of Persons with Disabilities (CRPD)…

(at 37) …what is the essential character of a deprivation of liberty? It is common ground that three components can be derived from Storck, paras 74 and 89, confirmed in Stanev, paras 117 and 120, as follows: (a) the objective component of confinement in a particular restricted place for a not negligible length of time; (b) the subjective component of lack of valid consent; and (c) the attribution of responsibility to the state…

45. In my view, it is axiomatic that people with disabilities, both mental and physical, have the same human rights as the rest of the human race. It may be that those rights have sometimes to be limited or restricted because of their disabilities, but the starting point should be the same as that for everyone else. This flows inexorably from the universal character of human rights, founded on the inherent dignity of all human beings, and is confirmed in the United Nations Convention on the Rights of Persons with Disabilities. Far from disability entitling the state to deny such people human rights: rather it places upon the state (and upon others) the duty to make reasonable accommodation to cater for the special needs of those with disabilities.

46. Those rights include the right to physical liberty, which is guaranteed by article 5 of the European Convention. This is not a right to do or to go where one pleases. It is a more focussed right, not to be deprived of that physical liberty. But, as it seems to me, what it means to be deprived of liberty must be the same for everyone, whether or not they have physical or mental disabilities. If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. The fact that my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage.

And even a good quality, but over-controlling, social care provision aimed at providing for a disabled person’s well-being still deprives them of their liberty, so you have to apply the safeguards.

For social workers and providers of social care, this makes it clear that even if what you are doing is for someone’s protection, and even if disability may lead to concern for someone’s safety and well-being, close supervision and restriction in the freedom to decide where you can go is still a deprivation of liberty, and requires the use of the safeguards.

Link to legal commentary: Supreme Court hands down decision on the joint appeals of Cheshire West and P&Q (MIG & MEG) – the Court ruled that all three were deprived of their liberty – Lexology.

Link to the Supreme Court Judgment Look for 19th March 2014 and click on ‘judgment’ in the right hand column in the cases of P and P and Q to get a pdf; the pdf is the same in both cases, since the judgment covers both cases. P and Q is what has been known as MIG and MEG in earlier proceedings.

Written by Malcolm Payne

21 March 2014 at 12:40 pm

Social work is needed when people with long-term illness are helped to live their lives rather than treated aggressively

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Renal medicine often presents problems for palliative care because people with serious or end-stage renal problems are often on a treadmill of regular and frequent dialysis and sometimes waiting for a transplant. Because of this it can be very hard for their medical teams to identify when they have reached the point when they should be seen as dying, and their service should take on a more palliative tinge. They often are – and feel – very ill a lot of the time, but may not experience the fear or ‘death sentence’ that people associate with cancer. At least, people used to associate the death sentence with cancer. Increasingly, though, people with cancer are treated successfully, go into remission and survive for many years and so the same issue sometimes applies: when do I decide that enough is enough (and how do I get my doctors to accept this)?

An interesting article compares survival of people with end stage renal failure who go on receiving dialysis, and those who are treated conservatively, with symptoms being managed and advice about managing their lives. At age 70, those on dialysis live longer, but may spend more time in hospital. At 80, they do not survive longer. And in both cases, those not using the hi-tech dialysis often lead very satisfactory lives.

This study speaks to a lot of things. First, they included a social worker in the team to support the conservatively treated patients. this is sensible: if healthcare services are going to focus on living a good life successfully, then people’s social relationships and arrangements for their lives are going to become more important.

Second, it raises some questions about assisted dying. Perhaps we should be looking at assisted living for people at the end stage of major illnesses, rather than arguing that they might be helped to die, or treating them aggressively and then despairing when this does not provide a very god lifestyle. Conservative treatments for major illnesses are not assisted dying, but they are providing the kind of assisted living that people feel is valuable.

Third, there is often far more choice about how you are treated if you have a major illness than the stark choice of suffering aggressive treatment or dying.

Link to the article.

Written by Malcolm Payne

16 January 2014 at 12:12 pm

Helping people with artificial limbs – useful update

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130617 ProstheticsAn interesting legal article, which looks at prosthetics, artificial limbs to you and me.Although this is basically for lawyers wanting to consider how to make appropriate claims on their clients’ behalves, social workers dealing with disabled people will also find it useful because it tells you about some of the problems that people with prosthetics might need help with. A useful bit of updating.

Apparently these are now so sophisticated that many people cannot get full use out of them, and whether they can use the most up-to-date possibilities is affected by other aspects of their medical condition. While people often claim for the most up-to-date technology, they are may well be better off with older stuff.

Link to article

Written by Malcolm Payne

19 June 2013 at 12:19 pm

Long-term care needs to be reliable, with funding certainty: not a government priority

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In a useful comment, lawyer Richard Lodge from the solicitors Kingsley Napley comments on compensation claims against the NHS. Someone else has argued that calculating the costs of care through private provision is ramping up the costs, and NHS care should be the main basis for care, but is not accounted for, by law, in the calculations. Lodge points out that most care payments is for the activities of daily life and usually provided by social care, for which the disabled person has to make a contribution. In any case, nowadays and increasingly in the future, it is provided through private care agencies, so the costs are legitimate.

Link to Richard Lodge’s comment.

This is not just a lawyer justifying himself, but reflects a reality which is very little recognised by some people in the NHS and many policy-makers. Long-term care is usually social care, and the NHS with its focus on getting people through an illness, is not the right organisation to be concerned with long-term care. Continuing NHS care is supposed to provide for long-term healthcare needs, but is usually administered very defensively, so you cannot rely on it. Reliable long-term care is a huge commitment, which local authority social care services have to take on without any certainty about funding into the future. And we’re not getting certainty because the government thinks sorting out the economy is more important than reliable long-term care.

Written by Malcolm Payne

9 January 2013 at 10:40 am