Staff working for a care provider in the Isle of Man lost an unencrypted memory stick (encryption means you have to put in a password before you can get at the information on the stick) with lots of client/patient information on it. Nobody knows where it went. They have had to sign an undertaking with the Isle of Man and UK regulator for information security.

Within the undertaking Praxis have agreed that all memory sticks, laptops and similar devices will be encrypted, all staff will be trained in the company’s policy for the storage, use and disposal of personal information, information which is no longer relevant will be disposed of in a secure manner, compliance with data protection policies will be regularly monitored and lastly the company will take steps to ensure personal data is secure.

In the iPad age, information is becoming more mobile, and people take it for granted that they can work on stuff on their mobile phones, Blackberries and iPads wherever they are. That means stuff is going to get lost. I wonder how many health and social care memory sticks have been lost from handbags or pockets over the past year or two. And how many were encrypted – difficult because you have to remember and input the password every time you use it. But it’s still personal information and often in a hospice or social care agency it will be highly personal stuff. Are we thinking carefully enough about this?

Another organisation got hammered for losing membership aplication forms on a train.

Details on the web here: http://www.ico.gov.uk/news/latest_news/2012/action-taken-after-care-provider-lost-unencrypted-memory-stick-18012012.aspx

I don’t know if you have ever talked to a woman who is approaching retirement with a reasonable salary but facing the prospect of an entirely inadequate pension; I find they are often in tears of frustration, anger and anxiety. This often arises because of the way the pension system has assumed women will rely on their breadwinning husbands, when for many people in the present generation long-term relationships that support a good pension just do not exist. It also happens because in the present and previous generations, and to a great extent still, women have usually borne the burden of child care responsibilities and other family caring, particularly for older relatives. A high proportion of women still get a lower basic state and second state pension than men in the same position, and this inequality will not be righted for some time, although the system is slowly moving towards equality.

I’m taken, therefore, by the detail of another House of Commons research report on Pension Contribution Conditions: sounds like a boring topic, but not to someone who is affected.

In particular, I think social workers should know that where people are doing more than 20 hours a week caring for children of other members of the family (even if there are breaks for respite care, holidays and hospital admissions), they can get a professional in health and social care to certify that they are careers and get National Insurance credits towards their pension. Anyone in health and social care can do this, carers do not have to be receiving some standard allowance. Have a look round the carers you’re working with and see if you can help them towards a better pension in the future. They might not be thinking about this, with all they have to do.

But their social worker should be thinking about it and doing something.

The report on the web here: http://www.parliament.uk/briefing-papers/SN03111. This also has stuff about other pensions changes and a current consultation on pension changes.

The glitterati of London palliative social work gathered at St Christopher’s yesterday (naturally, I exclude myself from this description) partly to congratulate Sue Taplin on achieving her doctorate, but mainly to discuss competencies in palliative social work, aided by a visit from Dr Susan Cadell, a senior academic at Wilfred Laurier University in Canada who was involved in the Canadian attempt to write social work competencies for what they call hospice palliative care.

Among the arguments for creating competencies is to clarify for other professions in palliative care what exactly social workers say is special about their role. Since other professions, in particular nursing, use competencies a lot, some people think that having similar statements about palliative social work might help to establish the profession more clearly with colleagues who can’t quite get what social work is about.

Some of the audience also wanted to use them to distinguish the wonders of palliative social work from other (and by implication in some eyes, lesser) forms of social work. This objective was greeted doubtfully by others, who thought that social work in child protection, or with mentally ill people, or with frail older people (or just about anything really) also dealt with difficult emotions, was stressful and a really important contribution to social well-being (especially if it was well done).

The Canadian project

Competences are based on research into the functional analysis of work roles. This was very popular in the 1980s as a way of looking at interdisciplinary teamwork. It takes a job title and breaks it down into a detailed list of functions. These are usually researched by getting together a whole crowd of people involved and recording their discussion, so you get a detailed list of possible functions, which are then tested out in consultation with a wider range of people. And indeed, this is what the palliative social workers did in Canada: they used a research technique called Delphi, which involves getting together a whole crowd of people involved, recording their discussion and then testing the results out with a wider range of people.

You can read the article here: Bosma, H. et al (2010) Creating social work competences for practice in hospice palliative care. Palliative Medicine. 24(1): 79-87.

(Researchers like to give classy – or classical – names to doing the obvious. You may be vaguely conscious that Delphi is a place in Greece where there was a famous oracle foretelling important events through the gods possessing a series of local peasant ladies of ‘blameless life’ – if you want to know how it worked, Wikipedia is the place: http://en.wikipedia.org/wiki/Delphi. Now you know that, you want to hear one of the prophecies, don’t you: also from Wikipedia: There are two roads, most distant from each other: the one leading to the honourable house of freedom, the other the house of slavery, which mortals must shun. It is possible to travel the one through manliness and lovely accord; so lead your people to this path. The other they reach through hateful strife and cowardly destruction; so shun it most of all.

(I’ll leave you to think that over. Anyway, the Delphi technique, originally created to help the American armed forces decide how the Soviets where going to target them in the cold war, is now used to achieve widespread consultation among different groups to gain agreement on a complicated problem, particular in healthcare professions – that is, according to the British Council, which publishes a useful and short description – with citations – of it: http://www.britishcouncil.org/eltons-delphi_technique.pdf. Deviation now over.)

Of course, any attempt to get social workers to agree about anything is bound to be complicated and so it was with this Canadian study. Finally, they got down to a basic list of competencies. These were:

Advocacy

Assessment

Care delivery

Care planning

Decision making

Evaluation

Education and research

Information sharing

Interdisciplinary team

Self-reflective practice

Community capacity building

Later in the consultative process, they added t these:

Cultural competency.

Each of these is buttressed by a fairly detailed list of what is involved in each. Apparently, some of the other professions have commented that these were fairly lengthy.

See for yourself: they are available on the Canadian Hospice Palliative Care Association website: http://www.chpca.net/social-work_counsellors_competencies.

The aim is then to create curricula for these in specialist or qualifying social work courses.

The Americans have also been at this: have a look at the NASW standards for social workers in palliative and end-of-life care:

On the web: http://www.naswdc.org/practice/bereavement/standards/standards0504New.pdf

Doubts about competencies

So far so uninspiring: what’s all the fuss about? It might seem obvious that you want people doing a professional job to have the ability to do it, so finding some way of defining what they ought to be competent at seems a reasonable thing to try to do. But, as Dr Cadell pointed out, many academics have their doubts about competences, and people who would like to look at the British literature on social work competences might like to find the following in their libraries:

O’Hagan, K. (ed.) (2007) Competence in Social Work Practice: A Practical Guide for Students and Professionals. (2nd edn) London: Jessica Kingsley.

Vass, A. A. and Harrison, B. (eds)(1996) Social Work Competences: Core Knowledge, Values and Skills. London: Sage.

Of these two books, O’Hagan is the only one now up-to-date and is written by people who are broadly sympathetic, whereas Vass and Harrison, while not totally dismissive, present the critique rather more enthusiastically. And any glance at the giant glossy American introductory texts on social work will tell you that the concept is alive and well over on the other side of the Atlantic (but not, according to Cadell, among her academic colleagues in Canada). There’s also a lot of it here, although it’s sometimes not called that, in the way in which social work education operates. For example, if you look at the higher education Quality Assurance Agency benchmark for social work courses, it has listings of things social workers have to be able to do, which includes listings of knowledge and skills in a variety of areas: these are in reality competencies, although the term is not actually used in the document, because UK academics have the same problems with it that Canadians do.

On the web:  http://www.qaa.ac.uk/Publications/InformationAndGuidance/Documents/socialwork08.pdf

And also in palliative care. To see the sort of thing that is available in the UK, look at the Common Core Competences for Social Care Workers in End-of-life Care produced by Skills for Care, the National End of Life Care Programme, the Department of Health and Skills for Health.

On the web at: http://www.skillsforcare.org.uk/developing_skills/endoflifecare/endoflifecare.aspx

So lots of people are at it, what’s the problem that the academics have with it?

The first problem is these long lists of things that people should be able to do. It’s complicated and detailed. All those of you who are refusing to be practice educators for students from social work qualifying courses have probably been put off it mainly by one thing. That is, the long tickbox lists of things that you have to produce evidence that the student can do, rather than people relying on your experience that in a global sense this person is OK at social work. There are practical ways of dealing with this. I get the students to write down the evidence that they would claim shows they can do this, and then I check it. Someone else refused to do it, and to get the placement the University paid one of their minions to be a ‘long-arm’ supervisor, complete the forms for the agency and shared the fee between the supervisor and the agency. One part-timer I know uses her own time just to go through the lists and put the evidence together: not everyone has this opportunity or would give up their free time to do it – particularly because the agency usually keeps the fee, rather than handing it over to the person who does all the work. But whatever you do, it is time-consuming, detailed, boring and repetitive.

As a result, it doesn’t encourage creative, flexible practice education focused on priorities.

On the other hand, I’m old enough to remember when some people, asked to write a report on the student they had just supervised for six months, sent in a few handwritten lines saying what a good egg they were. As an external examiner in those days, I not infrequently had to instruct universities to upset their relationships with their placement-providing agencies by complaining to the director of social services about the professional performance of their staff doing supervision work. I used to do it that way so that I could be blamed, not the poor staff on the course, who entirely agreed with me but had the job of fixing the placements for next year. Agency participation in qualifying education was partly designed to get the agencies to take responsibility for this, although generally this just meant that they stopped doing anything about social work education. I also remember the times when some supervisor would react adversely to a student and end up by psychoanalysing them for their personal problems, rather than looking rationally and in an organised way at what they could actually do. The use of competency checklists is an ace way of dealing with both of these problems. Both the practice educator and the student know what the student is required to be able to do, and there is a clear benchmark to assess them against.

The second problem is the research base: you can dignify it with research technique with a Greek classical name, but in reality all Delphi does is collect opinions. There’s not real empirical evidence there that this is what social workers actually do. In fact, Delphi tends to tell you what experts agree about: it doesn’t tell what actually happens on the ground. So what you have here is a list of what the competences that the people who believe in and are committed to palliative social work say is essential, but you have no idea what competencies social workers actually display.

The third problem is both theoretical and researchy. Functional analysis of job roles disaggregates something that is done holistically. So you don’t look at the job in the round and see the actions integrated into one another: instead you look at the job in little bits. It is difficult to research the distinctions between these different bits, hence the long and repetitive lists that tend to build up. And it looks at jobs in terms of ‘functions’ assuming that jobs contribute to an existing structure of tasks in an organisation, rather than looking creatively at possible new constructions of roles.

The fourth problem is that the listings start to look presumptuous. Outsiders look at it and say: ‘are they really claiming that they do all this and it is all essential to what they do?’ Other professionals look at it say: ‘Well, we do all that, too.’ The British Association of Social Workers once produced a report on the ‘social work task’ based on 1970s functional research into social work (now out of print and not on the internet, so I can’t give a link) and got roundly chastised for arrogance.

The answer to this point is that all the professionals (and others) working in palliative care occupy a territory in which their roles, knowledge and skills overlap. It’s the particular combination and emphasises of each role which defines it. But this, of course, also questions the methodology of functional analysis of job roles.

So how do you define palliative social work?

It’s all very well for me to witter on about the problems, how can we tell people what social work is in an understandable way. Several people at the meeting had various ideas, and of course I have several publications – I like to tell you about tehse occasionally. In particular, you can see my article on the role of social workers in end-of-life care in the journal End of Life Care:

On the web: http://endoflifecare.co.uk/journal/0101_colleagues.pdf

and you can download excerpts from my book: What is Professional Social Work?

http://lyceumbooks.com/WhatisProSW.htm

But in general, I’m a great believer in making clear that social work is about the social. Many social workers are currently keen to say that social work is not a ‘healthcare’ profession, particularly since in England it looks as though the registration of social workers will shift soon to the Health Professions Council (renamed the Health and Care Professions Council). So what is it then, the healthcare professionals all ask? To me, the objective of social work is increasing the resilience and solidarity of people in society. We work in healthcare, or with schools, or with parents and their children or wherever in order to achieve better parenting, better family care, better care for older people, disabled people and others and a better society in general. Getting involved in healthcare is only an instrument for achieving those social objectives. We don’t ourselves improve people’s health, we help them deal in their families and communities more effectively with the ill-health that assails them.

And the social involves being concerned with the whole social context of the people that we work with: their families and communities, their workplaces and schools. So palliative social workers tend to say (accurately) that while doctors and nurses focus only on the individual patient, social workers focus on the family and wider context that affects the patient and their care. That;s why social workers deal with boundary problems when agencies disagree or services need integrating. That’s why it’s their job to make the system work for their clients.

If you want a concrete example: here’s the one I use. Ask a counsellor to see someone with family problems because of death, dying or bereavement. The counsellor will sit down with their identified client (and refuse to see anyone else, because they’re focusing on their client) and help them to think through the emotional and relationship difficulties and practical problems that they are facing and identify ways of dealing with them, supporting them to do so. The social worker will get involved. For one thing, they will visit the home. If the children are distressed, they will work alongside the parents with the children. If there are relationship problems they will talk to both the husband and wife and anyone else who can help or is getting in the way. If there are money problems, they will sit down and work out what benefits can be claimed and help claim them. Show me the counsellor or clinical psychologist that will get involved in that way.

A visit to an old people’s home in Croydon for the launch of a new St Christopher’s project, bringing together social care and end-of-life care. I just had to go because the topic is such a direct hit on the subject matter of this blog.

For some time now, St Christopher’s has been focusing on all the people in our community who don’t get and don’t need a hospice service – the majority of people who die at home and in care homes. Too many of them, as the National End-of-life Care Programme says, end up in hospital, often because of anxiety by staff in a care home about whether they can cope with someone whose condition seems to be getting suddenly worse. Or, to be honest, whether the management of the care home have got anxious because too many people are dying and they don’t want to get the reputation for that. The problem with this is that, even if people think care homes are God’s waiting room, the managements mainly act as though everyone’s going to live forever with this wonderful care they’re getting. Of course, older people themselves realise that the reason why they’ve moved out of their own home is that they’re going to die soon and we have to recognise that better in health and social care.  As it is, we can all remember the Fawlty Towers episode in which a resident dies and John Cleese has difficulty in smuggling the body out of the hotel; that’s another example of the ‘nobody dies’ syndrome. Some hospitals and hospices are also set up to get the bodies out the back way (the John Cleese way, but probably not that incompetently), and in reality most people do not want to be involved with someone’s death unless they have to be. So it’s not surprising that people, even health and social care people, back away a bit when the prospect comes up. You can feel confident in your professional or interpersonal skills and still not think that you want to be involved in the death of someone that you’ve got to know.

So the National End-of-life Care Programme in its document: ‘The route to success in end-of-life care – achieving quality in care homes’ is keen to get care homes to be more prepared to take on people who are dying in their care home.

That is what the St Christopher’s project is all about. Pre-project statistics in Croydon showed that above the national and regional average of people (more than 50%) died in hospital and below the national and regional average died at home or in a care home – the place where they live. So, for some time, they’ve been working with nursing homes there, using the Gold Standards Framework (GSF), which improves training and commitment to good quality care at the end of life. They’ve massively improved the proportion of people dying in the nursing home rather than being blue-lighted to hospitals from  55% to 76% over a  year period. Obviously that means people dying where they are surrounded by things and people that they know rather than being in an alienating hospital. So now they’re going to repeat the trick with ordinary care homes starting with the four that are taking part in this project. Fewer people die there, but it’s still a big issue.

How do they do it? It’s mainly about supporting and developing staff so that they feel they can make a real contribution to making it better for their patients. At the launch, Veronica McCleary from Sanctuary Care in South Norwood, talked about the very real difference the preparation for the project made to her staff. She spoke about the increased confidence and a feeling of achievement that she and staff who attended the training had felt. They are now going to use this new project to help to improve the infrastructure in the organisation to support them. And you can’t change practice just by giving people training: you have to back that up by showing people in the care home how you can do things better and supporting them while they practice until the point where they feel able to do it on their own.

The St Christopher’s people are using the ‘six steps’ of the route to success document materials: you can see the St  Christopher’s document on their website: http://www.stchristophers.org.uk/sixsteps.

But some of this is greyed out because the Croydon project moves through the six steps in order. If you want to see a more complex document about six steps, you can look at the document prepared by a similar project in the North-West (but that seems to enjoy complicated forms more, although the overview guide is comprehensive):

http://www.endoflifecumbriaandlancashire.org.uk/six_steps.php

Or you can keep coming back to the St Christopher’s website as things get ungreyed over the next year:  http://www.stchristophers.org.uk/sixsteps. They also give you the email address of Jo Hockley to write to. She’s leading the show.

All this is a bit nursey and toolified (see below). The level of disability of people in care homes has grown and the consequent need for help and care has become more complex over the years, so skills with physical care have become more and more important. It’s a pity that this means that we concentrate on this, because a bit more skill on people’s social needs and personal development would also be a good idea (hence the St Christopher’s work on taking arts activities to care homes that I’ve talked about before). But the main point is that it’s quality of care that will help to move social care forward, and less concern about the financial and commissioning models which at best re-arrange the recliner chairs on decking of the Titanic care home

To go back and read up on the whole thing: the route to success document (the basis of the St Christopher’s and North-west projects) here: http://www.endoflifecareforadults.nhs.uk/assets/downloads/RtS_Care_Homes___Final__20100804.pdf

And if you;re interested in Gold Standards Framework for nursing homes (it’s also done with GPs), go here: http://www.goldstandardsframework.org.uk/.

Actually there are other route to success documents, for example on prisons, but more to the point there are many resources on the route to success website (now gnomically called RTS, so you might not have realised what it was about. Indeed, you might not have realised that route to success was about improving practice in end-of-life care. Obviously someone thought this was a cool title and it’s become a National Eol Care Programme brand. Unfortunately, it’s a brand that hasn’t had the advertising heft of Heinz, so while old hands may realise it’s end of life care baked beans, newcomers won’t know what it’s all about).

Anyway, you can get shedloads of useful documents, together with hammers and chisels to use on the coalface of end-of-life care. (Regular readers will know that I think there’s too much of a tendency in the NHS to conceal the reality that our job is mainly to fill in lots of forms, by calling forms tools – it seems so practical and sounds so professional and focused when you mention them to politicians. We might almost be as useful as plumbers).

Sorry about that, there is a website with lots of RTS tools to download. (There you are: if I’d just said that would you know what I was going on about?)

Useful stuff for helping people at the end of life: http://www.endoflifecareforadults.nhs.uk/tools/core-tools/rtsresourcepage

With all the talk about personalisation and direct payments, you might find it useful to look at a House of Commons Library report on the legal basis for direct payments, the things local authorities have discretion over (for example, employing relatives to help someone who is receiving direct payments), who is eligible, how much you can get and so on. It also (on the last page) has good links to further information. It’s only eight pages long. Presumably they write these things because MPs need help to deal with them.

It’s on the web, here: http://www.parliament.uk/briefing-papers/SN03735

In a legal commentary on R (on the application of (1) Sefton Care Association (2) Melton Health Care Ltd (3) Westcliffe Manor Nursing Home (4) Benridge Care Homes Ltd (5) Craignare Care Home) v Sefton Council, (a case heard in November 2011) there is a nice crisp comment from the lawyers. The court decided that:

the local authority had failed adequately to investigate or address the actual costs of care and had thereby failed to have due regard to those costs, contrary to both the guidance issued by the secretary of state and that issued by the Department of Health

the local authority was clearly under a duty to consult with the care home proprietors. There had, however, been no consultation in any meaningful sense and the local authority had therefore failed in its duty.

What this means for social landlords.

Here comes the comment:

Local authorities cannot just cut the fees it pays in a ‘cavalier fashion’ and in effect, say ‘tough luck’ to providers.

This may not seem reasonable to local authorities, who are under all sorts of pressure, but it does make sense to any normal person. Once a care home takes on a resident, they are stuck with them, unless they are going to upheave their lives again by sending them somewhere cheaper. So a local authority should be serious when it assesses what is a reasonable charge.

I wonder if the same applies to the commissioners of healthcare services, since they mainly do not pay the full cost of providing hospices. The previous government looked at the costs of providing palliative care and decided to carry right on relying on charities. but policy, in the UK and internationally, is that people are entitled to palliative care. The Conservative view is that hospices are a good thing, and a wonderful example of the Big Society. It is views like these that lead one to the cynicism that their view of the big society is something someone other than the government pays for.

The legal comment at Lexology: http://www.lexology.com/library/detail.aspx?g=1867ece5-5277-4902-9db0-ae264cb6d08b&utm_source=Lexology+Daily+Newsfeed&utm_medium=HTML+email+-+Body+-+General+section&utm_campaign=Lexology+subscriber+daily+feed&utm_content=Lexology+Daily+Newsfeed+2011-11-29&utm_term=

Another day, another document about end of life care quality standards. This one is the NICE guidance on quality standards for end-of-life care for adults: it is recognised as relevant to social care services. Its scope is set out as follows:

This quality standard covers all settings and services in which care is provided by health and social care staff to all adults approaching the end of life…

This quality standard provides health and social care workers, managers, service users and commissioners with a description of what high quality end of life care looks like, regardless of the underlying condition or setting…

Providing end of life care should be an integral part of every health and social care worker’s role. However for many, such care is likely to form only a small part of their workload. Many of these professionals are ‘generalists’ (GPs, community nurses and hospital medical and surgical staff, for example), recognising that some generalists will have a greater role in providing end of life care than others (such as care home workers).

NICE quality standards are for use by the NHS in England and do not have formal status in the social care sector. However, the NHS will not be able to provide a comprehensive service for all without working with social care communities. In this quality standard, care has been taken to make sure that any quality statements that refer to the social care sector are relevant and evidence-based. Social care commissioners and providers may therefore wish to use them, both to improve the quality of their services and support their colleagues in the NHS.

There is clearly an intention, then, that these standards should be used in social care, and this is notable since the Health and Social Care Bill will give NICE the job of giving guidance on social care. The aim that SCIE should be a NICE-equivalent in social care has clearly been lost; it has moved in another direction, and largely because it is premature to imagine you can give evidence-based guidance on social care; there just is not enough evidence. The problem though is whether a healthcare dominated body can twist its mind enough to give valid guidance on social care. This practice attempt suggests that the prospects are not good.

Limiting (non-social) definition of end-of-life care

Because it comes from a healthcare organisation, it takes a peculiarly non-social definition of end-of-life care: end-of-life care apparently is only what happens in what a healthcare professional determines to be the last twelve months of your life. We should really not just be accepting the General Medical Council definition of something that is mainly a matter of social experience.  We should be planning people’s last few years, not restricting that planning to when some healthcare professional has decided you’ve got a major illness. Aside from anything else, it reduces the pressure on people operating earlier on in the care process to help people to plan realistically for several years ahead.

This is the GMC definition used, and the comment on the implications of this:

People are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with:

advanced, progressive, incurable conditions

general frailty and coexisting conditions that mean they are expected to die within 12 months

existing conditions if they are at risk of dying from a sudden acute crisis in their condition

life-threatening acute conditions caused by sudden catastrophic events.

Given this, any palliative care within the last 12 months of life is regarded as end of life care. It is recognised that some people will benefit from palliative care before this time. Palliative care before the last 12 months of life is not included in this definition of end of life care and is therefore outside the scope of this quality standard (p. 7).

The inclusion as an element of this document of a quality standard for specialist palliative care, which is where people would be provided for according to this definition is inconsistent since the aim clearly is to extend beyond specialist palliative care.

It’s good that there’s recognition of specialist palliative care social workers (pp. 7-8).

Holistic care and assessment

In a way, there is nothing strikingly new in this guide: why would there be? It is a way of defining markers for standards that we already have. However, fully carried out, this is a mandate for much more effective and comprehensive care for families and carers particularly of people with end-of-life care needs. The section on holistic care for families for example:

Families and carers of people approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.

In a specialist palliative care service, this would be taken for granted, but in general practice and certainly in adult social care this is virtually non-existent. Care management assessments are supposed to be comprehensive, and person-centred assessments more so. However, they are mainly focused on organising services. A continuing process of holistic reassessment  integrating the needs of family and carers over two or three years of someone being in a care home is most unlikely. There might be some carer assessment on admission, but community adult social care staff are not going to have continuous engagement with the family of people receiving care services.  What else is required here:

a) Evidence of local arrangements to ensure that families and carers of people approaching the end of life receive comprehensive holistic assessments in response to their changing needs and preferences.

b) Evidence of local arrangements to ensure that families and carers of people approaching the end of life are offered holistic support appropriate to their own current needs and preferences.

Of course, because of their healthcare-oriented medical definition or end-of-life care, this is only people who are in the last year of life. So, GPs of people in care homes and in their own homes and possibly managers of care homes and other professionals visiting people in the community are supposed to apply their mind to whether they think their patients and clients are going to be at the end of life – another of the standards has them doing this in a timely way.   When they decide that they are, local arrangements swing into action for comprehensive holistic assessment and support for ‘current’ needs and preferences (current implies that they will look again periodically to make sure they’re still current). We’re a very long way from this in relation to end-of-life care (for example thinking about advance care planning of end-of-life care) for most older people in the community and many older people in care homes.

Here are another couple of holistic end-of-life quality markers:

People approaching the end of life have their physical and specific psychological needs safely, effectively and appropriately met at any time of day or night, including access to medicines and equipment.

People approaching the end of life are offered timely personalised support for their social, practical and emotional needs, which is appropriate to their preferences, and maximises independence and social participation for as long as possible.

Physical yes, if a good GP is regularly involved. Although many patients won’t tell them about pain and they might not get a real handle on the long-term mixture of minor problematic conditions in most older people’s lives. The way in which most care homes have to rethink the total package of medications that someone comes in with is evidence of that. But psychological assessment and support, and personalised support for social practice and emotional needs (i.e. not a few bingo sessions in the lounge for everyone and always–on telly) and independence and social participation are not on the agenda in many care homes or community services for older people. Simply coping with the care needs is too much for the serial carers for four bouts of 15 minutes a day that is the lot of most older people in the community. But many of them will be approaching the end of life (although some not by the medical definition used by these standards), so they should be getting this standard of care.

Bereavement care

Looking at the quality standard for bereavement care, the structure of services should include:

a) Evidence of a local needs assessment for bereavement services, detailing specialist support needs for all sections of the community including vulnerable groups such as children and those with learning difficulties.

b) Evidence that a local service specification for bereavement services has been developed in partnership with acute, community, voluntary and private sector providers and local authorities, which includes the provision of specialist support for groups identified in the needs assessment.

As regular readers will know, I have my doubts about bereavement needs assessment, because services for the patient may not have had much contact with a patient’s family prior to death, and they certainly won’t have had contact with all the people who have been affected by a bereavement. And what are they supposed to do? Observe relatives covertly (without informed consent – remember bereaved families have not agreed to be bereavement patients of the health and social care services just because they are related to someone who is dying).  And do this alongside everything else they have to do, to see if they can identify any adverse bereavement reactions? Anyway, these will very likely set in later, so observations at the time of death are unlikely to be helpful. No, what we have to do is increase the level of awareness that people might have bereavement problems, make sure they know where to go if difficulties arise and that all services are alert to think about bereavement when they are presented with someone in middle life with emotional and psychological problems. I don’t think enough people in everyday social care (and I have my doubts about healthcare too but know less about it) are conscious that loss and bereavement issues might be affecting the people that they are dealing with.

And there might be some sort of bereavement service available, but will there really be specialist help available for particular groups who really need it: vulnerable groups such as children and those with learning difficulties. Later there is also mention of the following:

People closely affected by a death may include care home residents, staff and volunteers, staff from a variety of health and social care organisations, as well as family members and carers, including children. Children may need particular tailored support.

Families and carers of people who have died suddenly or in an unexpected way, as well as those who were expecting the death, should have access to information and support appropriate to their circumstances.

The standard required is:

…bereaved people [should be] offered support at the time of death that is culturally and spiritually appropriate, immediate, and available shortly afterwards.

Bereavement support may be not be limited to immediately after death, but may be required on a longer-term basis and, in some cases, may begin before death…

And the ‘stepped approach to emotional and bereavement support’ on top of good information will include: general emotional and bereavement support, such as supportive conversations with generalist health and social care workers or support from the voluntary, community and faith sectors.

Health and social care workers [should] communicate sensitively with people closely affected by a death and offer them immediate and ongoing bereavement, emotional and spiritual support appropriate to their needs and preferences.

This is just not going to happen on a general basis; I’m not saying they would be unsympathetic if bereavement issues are mentioned to them, but most health and social care staff are not involved with relatives of people who have died – the case is closed, the care home room is occupied by someone else. And nobody is going to go looking for this kind of work in general health and social care.

Inequalities

One of the striking things, at the beginning, is the approach to inequalities, and the very long listing of factors that you should not be using to disadvantage people:

• gender
• ethnicity
• disability
• cognitive impairment
• age
• sexual orientation
• gender reassignment
• religion and belief
• culture or lifestyle
• marriage and civil partnership
• pregnancy and maternity
• socio-economic status
• mental capacity
• diagnosis
• choices they make about their care
• location and setting in which they are receiving care.

This last is particularly important: there is a bit of a tendency in health and social care to say: ‘if you don’t accept our plans for where you are going to be cared for, we don’t accept any responsibility for bothering with you.’

ELCQuA quality standards: no evidence of the social

Also striking is the number of overall headings that the current ELCQuA quality standards do not produce evidence about:

2. People approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.

5. People approaching the end of life are offered timely personalised support for their social, practical and emotional needs, which is appropriate to their preferences, and maximises independence and social participation for as long as possible.

6. People approaching the end of life are offered spiritual and religious support appropriate to their needs and preferences.

7. Families and carers of people approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.

15. Health and social care workers have the knowledge, skills and attitudes necessary to be competent to provide high-quality care and support for people approaching the end of life and their families and carers.

You will notice that it’s precisely all those areas where palliative care based in healthcare takes no notice of social needs and social care. Palliative care needs to change a lot if it is to recognise the reality that the quality of service to their very sick patients has not been transferred to the normal population of people approaching the end of life.

So whereas people in specialist palliative care will think this guidance is unexceptional, and so it is, there’s a long way to go before end-of-life care planning is going to be a general attribute of health and social care in the UK to the quality that these markers are seeking.

References

The NICE quality markers for end-of-life care are on the web at: http://www.nice.org.uk/media/EE7/57/EoLCFinalQS.pdf

It alos contains links to a lot of other useful dopcuments, so it is a good way into information about end-of-life care.

A related document is the quality markers that PCTs are supposed to use to assess end-of-life care (again by the medical definition) in healthcare services. This is different from the wider application of the NICE quality markers, which also applies to places like social care-commissioned care homes. It is also theoretically not so evidence-based as the NICE markers, although frankly a lot of it all seems to me to be based on opinion.

Department of Health (2009) End of Life Care Strategy: Quality Markers and Measures for End of Life Care. London: Department of Health. http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_101684.pdf

If you just want the main points of the NICE quality markers, the overall headings are here: http://www.nice.org.uk/guidance/qualitystandards/endoflifecare/home.jsp?domedia=1&mid=E9C7F836-19B9-E0B5-D4B49B5A7149F081

Further critique from the social care perspective is contained in the comments from the social care stakeholders. You can find this at: http://www.nice.org.uk/media/10D/2B/SocialCareWorkshopNotesJuly2011.pdf

This document points out that the draft was totally blind about all the standards that care homes and social care agencies have to work to (and the final document still is), and failed to look at safeguarding issues and the needs of children and young people (and the final document still doesn’t).

SCIE (the Social Care Institute for Excellence) is (at last; thank goodness) getting into end of lfe care on behalf of social workers. They have a new Hub page, with links to end of life issues of interest to social workers. It’s particularly useful for social care providers including care homes.

SCIE end of life care hub: http://www.scie.org.uk/adults/endoflifecare/index.asp

Anyway at SCAG (see the previous post), Jean Tottie introduced me to the Life Story Network.

The website is here: http://www.lifestorynetwork.org.uk/lifestory/

Videos from (mainly) older people here: http://www.lifestorynetwork.org.uk/innovation-and-practice/

This is about getting people to document their life story through writing, photos, computer files memory boxes, audio tapes and making DVDs. St Christopher’s does a lot of this, and it is important also to distinguish it from reminiscence and life review, which may have more therapeutic purposes. You can work with an individual or family or part of a family. In palliative care, it might be about memorialising someone you has died or is dying, or their relationships with you, or expressing something important about their lives.

Life Story Network is mainly about providing training, but their website has several interesting and creative videos from older people.

The Dementia UK also has webpages on Uniting Carers, http://www.dementiauk.org/what-we-do/uniting-carers/ which has several carers’ stories in the same vein, one of them Jean’s experience of caring for her father (there are long and short versions, and I’m afraid both are not well-formatted on the site, but they are very instructive about what older people and their carers have to go through).

Long version of Jean’s story: http://www.dementiauk.org/assets/files/what_we_do/uniting_carers/carersjourney.pdf

Short version: http://www.dementiauk.org/what-we-do/uniting-carers/carers-experiences/jean-tottie-s-story/

Other carers’ experiences: http://www.dementiauk.org/what-we-do/uniting-carers/carers-experiences/

Although she is an experienced health and social care professional, she found it difficult to get knowledgeable and consistent help from health and social care services. The services really were not set up to deal adequately with someone with dementia, and had failed to think through dealing adequately with carers. Here is her account (after pressing the need for ages) of his first visit to the memory clinic:

The first visit to the Memory Clinic was an interesting experience. Dad and I were seen by someone I assumed to be a nurse but later discovered otherwise. No introductions (other than first name) were made or explanation of how the clinic operated. The MMSE was done and I helped complete the picture with corrections on daily living activities. I would have welcomed a separate meeting as a carer as I felt that always being together meant that the conversations turned to me to confirm or correct Dad’s answers until he was excluded from the conversation. We were given no feedback on the MMSE and went straight in to see the doctor who hadn’t seen the result. The Doctor said that Dad probably had vascular dementia, but wanted to be sure with a brain scan, and prescribed galantamine. I was told I could ring the CMHT for advice if needed – but I didn’t know who or where they were! The only time I did ring I wanted to speak to a clinician because Dad was unwell but the CPN was on leave and there were no other clinical staff available in the team so I rang the hospital doctor for advice. After this clinic I asked Dad what he thought but he said he hadn’t heard much of it and did not know what had been going on.

A good communication lesson here: make sure your patient/client can hear you before you start.

At the Social Care Advisory Group meeting yesterday of the National End-of-Life Care Programme. They call it SCAG – the more naive among you may not know that this is a drug user’s term for their drugs, but I find from Urban Dictionary http://www.urbandictionary.com/define.php?term=scag that some people use it to mean: ‘Someone who never has anything they need, and has to constantly borrow from other people although they have no intentions of returning said item’. I think this is a word I am going to keep in mind: I didn’t know there was a term for this common behavioural syndrome, and even less did I know that it’s a cool term.

Perhaps they should change the name to ‘Social Work Advisory Group’, so it could be ‘SWAG’.But this may not help: my memory of the meaning of swag was the results of a theft – as the Oxford dictionary has it: money or goods taken by a thief or burglar. Even this is only informal and the main meaning is an ornamental festoon or garland of flowers, fruit or greenery or a carving or fabric imitation of such a thing. Of course, I now remember this from the guide’s descriptions in many visits to stately homes. And I am reminded of Waltzing Matilda: ‘once a jolly swagman etc etc.’; swag is Australian for one’s bundle of possessions and a swagman is someone who travels with such a bundle, even perhaps someone who has nothing else but such a bundle.

But Urban dictionary puts me right on current terminology: swag is what you get in a goodie bag at a party, or promotional freebies given out by commercial organisations. This leads to the main streeetwise meaning. To quote: appearance, style, or the way he or she presents them selves, as in: He got a killa swag. You’ll have gathered that although Urban dictionary keeps you up to date, it does not represent grammatical English (indeed, I should mention that I have corrected the spelling and punctuation in quotations from UD, in case anyone there is offended).

So perhaps Social Work Advisory Group is no better.