Social work and end-of-life care

Social work is important in end-of-life care

Archive for the ‘social care’ Category

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.

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Information governance report covers social care, deceased people

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20140227 Infogov reviewStimulated by all the discussion about whether we should agree to GPs sending our medical records to a central source to be sold to insurance companies and the like, I’ve been looking at last year’s Information Governance Review.

Link to Information Governance Review Report

This is a follow-up to the Caldicott Review of 1997, which you can get on the Internet from the Government Archives; they are now archiving important web documents…

Link to the Caldicott Review (1997)

This is one of those amazing government documents that led to something happening, and for some years, I was a Caldicott Guardian, charged with representing patients team in the management of the hospice I worked for as part of ensuring the confidentiality of their records.

Link to the Caldicott Guardians website.

The Review Report from last year went back to the whole process, and particularly in the light of the massive expansion in communication arising from the ubiquity of the internet. Also amazingly, Dame Fiona Caldicott was still around to chair it, and still had enough credibility to do so.

One new feature is that health and social care are covered, since although the term ‘social care’ was just coming into use back then. It is now more commonplace. But not really in anything to do with the Department of (very much only) Health. In the new report it is all ‘elfnsoshall’ with the basic assumption that you don’t need to think very much about what social work is all about – just talk about the NHS and everything is the same. Very few people involved directly with social care were on Dame Fiona’s committee.

There is a section on children and family records, and this covers some of the complexities of social care records in this field, but it still references the Royal College of General Practitioners and the BMA rather than agencies with social care expertise. It notes issues about children’s social care records: many children’s social care departments have family records, alongside individual children’s records, and this has always been complicated, although is better in some ways since computers permitted multiple postings to different records, if an entry covered several children or family members in one go.

However, the report also notes that the Health and Social Care Information Centre (of current GP records fame that has covered itself with pooh over its schemes for GP information) does not have the statutory right to collect children and families social care data. I’m comforted by this, in view of the government’s wish to sell as much health data as possible to private sector organisations for as much money as possible, which has only been stymied for a brief period of grace before it goes ahead again, due to widespread anxiety about confidentiality. We can do without this organisation getting its commercialised mitts on social care data as well.

There is also a brief section on deceased people, since NHS records are clearly available to appropriate people after death, while this is not possible in social care. The proposal is to think about people being able to give custody of the health and social care data in their Will: this would resolve some of the problems health care agencies have in giving access. Although perhaps not. When I worked in a hospice, fighting over the records was often a follow-on to fighting among family members about the estate, sometimes as a proxy for their role in the family

5.7 The deceased

There is a lack of consistency in the approach to the data of deceased people within the health and social care system. The common law duty of confidence is generally regarded as extending to the deceased but the Data Protection Act only relates to the living. Legal representatives or those with a claim on the estate of a deceased person are able to access the health records of the deceased person through the Access to Health Records Act 1990, but there is no equivalent legal route for access to social care records. Some ‘work-arounds’are used but these are increasingly untenable (p 58).

As people gain more control of their information, it should be possible for a person to give custodianship of their personal confidential data after their death to someone, or to a research data bank, so that future generations can use it to learn and improve the health and wellbeing of society.

The review panel concluded that the Law Commission, in their review of the legal aspects of data sharing should consider looking at how the law surrounding deceased persons might be better harmonised. In particular, the Panel would like the Law Commission to consider ensuring there are no legal impediments to giving custodianship of their health and social care data within their last will and testament (p59).

But it does contain a useful pile of information about information – well worth taking a look at and following up.

Written by Malcolm Payne

10 March 2014 at 11:28 am

Think about the social and psychological needs of employees who survive cancer

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I came across a useful discussion, on an employment law website, of returning to work after having cancer; many people do, some people don’t. But employers need to focus on the psychological and social (‘softer’) changes that cancer survivors make in their lives, as well as making changes in their employee’s lives that respond to the physical problems created by their bout of cancer. This will become increasingly important as people’s working lives extend beyond their early sixties and as cancer is increasingly seen as a survivable illness, rather than a death sentence.

Link to the article140220 working with cancer

This article is written by an organisation, Working with Cancer,  concerned with helping people, through providing coaching for individuals and information more widely, return to work successfully after a period of cancer. They have a useful website.

Written by Malcolm Payne

20 February 2014 at 8:56 am

Tips for voluntary organisations dealing with NHS and social care commissioners

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A legal advice newsletter points out that with voluntary organisations increasingly being commissioned to provide NHS and social care services, they are also increasingly being asked for loads of information, but also need to be supported in doing so. You have to ask, as ministers in Parliament do when asked questions by MPs, whether the cost of collecting the data is justified. If it’s a real drag on service provision, and/or the commissioner won’t pay adequate admin costs, the voluntary organisation should seriously consider saying ‘no’ or ‘pay us for it’. Here are the points the newletter suggests a volorg should consider:

  • The time involved in giving this support. Smaller organisations in particular need to ensure costs are covered.
  • Organisations need to ensure any information they provide is not used out of context or in any way that could damage their reputation.
  • Confidentiality – if the information is not in the public domain, does your organisation have the right to pass it on?
  • Data protection – take care in passing personal data to commissioners as you will need to meet your data protection obligations.

I’ve often thought that voluntary organisations are naive about whether the local NHS or social care administration is on their side: my answer is that of course friendly relationships are necessary, but they also need to accept that volorgs take a business-like approach to  the relationships. Commissioners often think that because they’re paying the volorg staff are inferior in some way and should be expected to jump around doing whatever they decide. Good relationships work from both ends of commissioning; the volorg is not a supplicant, but an equal professional partner in providing a service. The article sees supporting the commissioning relationship as an important role for the commissioner.

Link to the original article on commissioning support

 

Written by Malcolm Payne

6 January 2014 at 12:13 pm

Compensation when complex care goes wrong: we need public service not medical negligence

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130701 No fault claimsAn interesting comment from a lawyer about whether a ‘no fault’ basis for claims against the NHS would be better than the present system where people who are dissatisfied with their care on the NHS and seek compensation have to go to court. She’s writing on a blog about clinical negligence. Her view is that because you have to have expert evidence, it discourages people trying it on, and leads to a fair outcome. Many people also argue that the court system has a formula for compensation which is more realistic than the amount that would normally be arrived at by a bureaucratic system, in which the government would inevitably have a hand.

The main argument for a no fault system is that if you need compensation for something that has gone wrong, you have needs that should be met, and meeting those needs should not depend on whether you can prove someone was at fault. Often things go wrong and nobody is at fault, but your care needs still have to be met. And it means you have to go into battle, in public, and the medical profession has it well-sorted to defend themselves at all costs. Also, it often means that people who can prove a fault and get compensation get more choice and better, more luxurious care than someone with just the same needs you cannot prove a fault. Why should the wronged get better care than the unlucky?

One view of the interests of public policy, which this comment alludes to, is that having an adversarial system encourages the NHS (which after all is a public service) to conceal problems rather than seek to get it right for you and, by improving their services, for later patients too. Also, of course, it sets people against their doctors and service providers, when they will continue to need care later in their lives, but might often be seen as troublemakers. And where it is a public service, like social care services still are, a complaints mechanism and political responsibility should still play a part. The problem with just accepting a complaints mechanism and no fault compensation is that it seems to be impossible to get public services to look at their what they’ve done and acknowledge it when they’ve got it wrong. That’s probably human nature.

Added to the natural human tendency to be defensive if you are in the wrong, the market system of care, with bits of the service increasingly privatised, make it increasingly hard to tell what you should hold a public service responsible for. In the Guardian today, film-makers are complaining about the BBC ‘commissioners’ interfering in their creative processes to pursue the channel ‘demographic’, by which I mean some marketing policy that they’ve drawn up to differentiate their channel from some other piecemeal provision. Are NHS or social care commissioners likely to be any better at valuing creative but expensive care, or ideas that don’t fit the standard mold of policy that is in fashion at the moment? NHS and social care managers are also inclined to interfere with openness with patients to protect the market view of their bit of the health service; I suspect this is the main source of the problems over the Care Quality Commission, also in the papers over the last few weeks. It’s not that the people at the top were inherently evil-doers, it’s that in the environment that our politicians have created in which everything, including our health and social care, is bought and sold, the selling bit of the job means that managers have to abandon honest human relationships in favour of brand management. And they’ve learned as part of the influence of private sector management on the public sector this over the past twenty years, so they’ve lost the public ethos of service and concern for patients.

But the real problem with compensation claims for medical negligence is that it deals with a particular kind of medicine, but not the broad care services of which medicine is a part which we have seen in the news lately. What is the point of suing a doctor for compensation if the problem is with the coordination and integration of a whole care service? Nurses and other professionals, including social workers, are involved and all kinds of provision, which are not the subject of a prescription or an operation. One bad thing about this is that it encourages people to see doctors as the people ‘in charge’ who order everyone else around, and the doctors to feel that they are entitled to do that because they are legally responsible if the care goes wrong. This creates the wrong attitudes among some doctors and encourages a handmaiden approach among other professionals rather than multiprofessional teamwork.

What is the role of medical negligence in end-of-life care, for example. Yes, it is possible that the doctor gets their dose of morphine wrong, or a nurse fails to respond to a frustrating patient on the buzzer for the nth time, but the quality of the service mainly depends on a seamless integration of a wide range of helpers mainly in people’s own homes. This may include social work, whose role is particularly undefined and poorly understood by everyone involved, and so therefore not readily liable to some kind of compensation culture. We do need a sensible way of judging whether someone got a good deal for services like these when they are dissatisfied or need compensation. And since hospices are small providers in an increasingly commercialised world, you do wonder whether the new NHS is going to mean that marketing is going to be to the fore and admitting mistakes and improving service quality will fall by the wayside.

And what about the medical care which fails to acknowledge end-of-life care at all? Most people who have worked in hospices have experienced the well-off patient (and occasionally not so well-off) transferred at the last minute from the private hospital whose cancer doctor has been telling them for weeks that the latest (expensively charged-for) procedure is certainly going to cure them, and who then need to get them off the premises quickly before they actually die. I’ve noted before that the caring ads of the private insurers that you see selling their cancer care wares, while increasingly recognising the psychological elements of care that they need to be concerned with, still fail to mention that actually quite a lot of people still die from cancer.

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

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130617 4UKsystemsIn 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.

Written by Malcolm Payne

17 June 2013 at 2:44 pm

Scottish legislation on Self Directed Support

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Self-directed support is what is sometimes called ‘personalisation’ in which social care is managed to some degree by the person receiving it. The new Scottish legislation, the Social Care (Self-directed Support) (Scotland) Act 2013, comes into force in 2014, and then will be rolled out over the following five years. It offers people five choices:

  • Option 1 –  Direct payment – local authority make payment direct to the individual who then employs a carer.
  • Option 2 –  Person selects the support and local authority arranges it.
  • Option 3 –  Local authority selects support and arrange for its provision.
  • Option 4 –  A mix of the above.

A link to a legal comment: Self Directed Support – The Right Direction.

Written by Malcolm Payne

17 February 2013 at 4:22 pm