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

Coordinating 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.

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

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

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.

Good nursing and care for relatives in the NHS

And good care for dying people is not only available in big urban hospitals. Our uncle Don (aged 95) was recently cared for at the new Malvern Community Hospital in the last weeks of his life. It has 18 GP beds and a minor injuries unit. With her extensive experience of palliative care, Margaret says with appreciation that the nursing for patients and support for relatives was a good as any hospice.

Link to Malvern Community Hospital website

Good care for dying people in NHS hospitals is still possible

A thoughtful article in the Guardian by Julie Myerson, who suggests that often in the NHS you can get wonderful care for dying people, even in the biggest urban hospitals and busy wards. It is a story of effective nursing and good communication with relatives in a busy London hospital. And, incidentally, the hospital that Cicely Saunders started out from in her experience as a social worker which eventually led to her contribution to the origins of the hospice movement. Good to see that the medical and nursing skills involved still exist.

Child visitors in adult care facilities- think it through

Should celebrities be treated any differently to volunteer fundraisers who don’t have celebrity status? Why? What privileges (if any) should they be granted? Why?

This is a quotation from advice issued by a London firm of lawyers, which has several pages of questions that organisations ought to think about to make sure their policy and practices robust if they might have a Jimmy Savile in their midst. There is a review of NHS policy going on, conducted by a barrister, Kate Lampard – NHS staff can make comment to her on safeguarding, governance, celebrities and complaints and whistle-blowing: link below.

But since many voluntary organisations and many other caring bodies have celebrity involvement from time to time, their managements should be thinking about how they should handle problems that might arise. And that has implications for general safeguarding, volunteering and staff arrangements.

All hospices and care homes have children around from time to time, but they are mainly geared up for adults, and may not have thought too clearly about their responsibilities for safeguarding children who are visiting relatives.  Adults who are responsible for the children might well be stressed and coping with all sorts of pressures at the time. It’s all too easy to assume that other visitors to the hospice are good-willed, and leave your child in the waiting room or visitors lounge. But what if a visitor to a hospice mentioned to a member of staff that they thought it was wrong that another visitor was taking someone’s child off into the garden on their own? Would it be clear what the visitor should do to raise concerns? Would the staff member know what to do? If the staff member were a volunteer in the tea bar, would they know what to do?

Any management of any care facility needs to have thought it through and have appropriate processes and training in place.

Link to the Mills and Reeve legal advice document

Link to Kate Lampard, to make comment (you have to reply be the end of June): lampardcomments@dh.gsi.gov.uk

Different UK health and social care systems: they don’t learn from each other

In an interesting report for the King’s Fund healthcare think tank and the European Observatory on health policy, Nicholas Timmins looks at what the four different healthcare systems in the UK have learned from the differences in each other.

Not a lot is the answer, mainly because they are contemptuous of each others’ policies, and especially of the English market-based system (except when it was found that targets reduced waiting times – and by the look of it, I would say that wavering on targets does not help). The report finds that , if more comparative work was done, it would show over time whether markets or co-operation works best.

This report is an example of the over-emphasis on health. There are four systems of social care, too, and very little research into what works best.

Link to the report.

Empathy: The Human Connection to Patient Care – YouTube

Empathy: The Human Connection to Patient Care – YouTube.

This is quite a nice short film, which doesn’t tell you much about empathy, but does emphasise how everyone (including staff) for at home, in hospital or hospice or out and about has wider life concerns as well as their reason fr being involved in caring – and the concerns are not necessarily immediate or directly connected to their role – the young doctor who is seven years free from cancer, for example. Watch the young woman and her mother (?) hugging as they’ve just signed a do not resuscitate decision.

Challenging unrealistic hopes for dying patients – facilities and skills needed

Emily Madsen makes a comment on my post of a few months ago, about facilities in hospitals for private consultations between relatives and staff; too much talk about private matters goes on in corridors, not surprising when the facilities in hospitals are so outdated and unimproved as suggested by this outside view of my local hospital, taken in 2011 but still untarted-up.

Emily says: Interestingly, my experience in the acute sector has often been the reverse – multiple situations when families have expressed concern at the ongoing medical management plan when patient is clearly dying but no one seems to be able to say it…

You may have missed this, because she’s commenting on something said away back, so I’ve made a new post out of it to highlight what she’s saying.

I do agree with her, but I wonder if one of the reasons why doctors, nurses and social workers in hospitals don’t have these difficult talks about the reality that a patient is dying is that they have no place to sit down with someone and have a conversation, as opposed to passing on a quick bit of information. It also means that there is no experience among relatives of having a thoughtful conversation, except at the patient’s bedside. So medical management plans do not include thinking about what they need to say to relatives. And vice versa, families do not get a chance of a serious conversation in which they can express their fears and have unrealistic hopes challenged.

As a result, many hospital staff do not develop the skill and practice of deciding that they need to raise a difficult topic, picking people up as they visit and then saying: ‘We need to have a talk about something important’ and being able to take them to a private room, give them a cup of coffee/tea and spend time with them talking over their patient’s realistic chances.

It’s not only the facilities, of course. One of the problems is the healthcare bias that favours talking only to patients about their condition, rather than seeing it as their job to engage the relatives, too. That’s why they need more social workers integrated into teams in hospitals.

Link to the original post. Thanks for the comment, Emily.

Resuscitation: hospitals need facilities for private consultations with patients and relatives

I’m having a lawyers morning. Here’s another interesting comment on Do Not Resuscitate orders. These are decisions made by a doctor not to attempt to use cardio-pulmonary resuscitation with a patient, whose heart and lungs fail. The doctor generally puts a note for other staff on the patient’s records. The responsibility is the doctor’s, because a doctor cannot be requested or forced to provide treatment that is not considered to be in the best interests of their patient.  Good medical practice, however, is that they inform and consult with relatives. Doctors, particularly inexperienced junior doctors in busy general hospitals not used to handling dying people, often do not do this consultation. This happens partly, possibly, because they don’t have the competent communication skills to have what are sometimes difficult conversations. It also happens because most general hospitals do not actually know the relatives of their patients: their records call patients ‘pt’ and relatives are called ‘mum’ ‘wife’ rather than by their names, and the doctors are not often around when the relatives are to have the conversation. So it gets left.

Contrary to the fantasy of many of the supporters of assisted suicide, it is far more common for people to be upset at any recognition that a patient is dying and needs to be left free to get on with that than it is for people to be upset that health services are keeping people going when they would rather die. Consequently, unconsulted relatives often complain about DNR decisions, even though relatives generally do not have a right to make or be involved in a patient’s decisions about treatment – it is for the patient alone. And lawyers therefore have an interest in the legal sequelae of these events.

After reviewing some recent cases, Hope concludes:

It is evident that policy surrounding DNRs is inconsistent and lacks transparency. Many of those families subjected to DNRs following a unilateral medical decision seek for the law surrounding DNR notices to be clarified as they can constitute an interference with the fundamental rights of vulnerable patients. Whether they should be governed by the Department of Health following a public enquiry and ensuing national policy is one suggestion, however it is clear that the current status quo of surrendering this issue to individual Trust policy and professional guidelines is inadequate.

It seems this is another misunderstanding by someone who thinks this is a matter of policy rather than professional skill. The reality is that cardio-pulmonary resuscitation is not all-wonderful as the telly in programmes such as ‘Casualty’ would have us believe; it is often ineffective, and not appropriate for many people, in particular people at the end stage of major illnesses, and many cancers. It is not a right to receive this treatment, and it is certainly not a right for relatives to interfere with a decision that a patient wants to make. What is required, however, is a policy of training doctors to make appropriate consultations, helping them to develop the skills to do so and organising hospitals and other healthcare services so that consultation can be appropriately carried out. There are many hospital wards where there is no provision for a private discussion between doctor, patient and relatives. Now that is a matter of policy, which I don’t hear talked about much.

Link to Brendan Hope’s comment on ‘do not resuscitate’ orders.