Over the Christmas period, I missed the government consultation on bereavement benefits, but you’ve got until 12^th March to reply. And there’s lots of useful info in the consultation document.

There are three bereavement benefits currently payable:

Bereavement Payment – a one-off tax-free payment of £2,000 payable to someone after their wife, husband or civil partner has died.

Bereavement Allowance – a taxable weekly benefit which can be paid to someone for up to 52 weeks from the date of death of their wife, husband or civil partner if they are over 45 and under State Pension age.

Widowed Parent’s Allowance – a taxable weekly benefit which may be payable to a parent whose husband, wife or civil partner has died if they have at least one child for whom they receive Child Benefit. It is payable until the claimant reaches State Pension age or upon cohabiting or remarriage/formation of civil partnership.

So that’s basically a cash sum to pay for the funeral and other expenses at the time, a weekly allowance for re-adjustment immediately after the death of a partner and then an extra payment if you are responsible for a child. The government’s position is that it’s too complicated and, playing their current relooping Mpeg (this is the new form of a cracked record – who has records any longer? Do young people know that they could get cracks?), it disconnects people from the employment market, so bereaved people are not incentivised to get back into work (which of course would be good for them and save the government money).

The first aim of their proposed reforms are that people should be supported by normal income support, rather than special measures for bereaved people, so they want to have a bigger up-front  bereavement payment for the transitional period. This of course will push all bereaved people sooner rather than later into the standard ‘get work or else’ approach of the present government. There is a whole paragraph about the ‘lack of conditionality’, which means there’s no requirement to seek employment as a condition of getting the benefit. I imagine people did not think about that back in the 20s when widows benefits were first thought of. I don’t know how I feel about it now: on the one hand I recognise that most women as well as men who are bereaved now do go out to work and want to do so, and tying them into help and encouragement to move forward into work is useful. On the other hand, making it a condition of a benefit has a harsh feeling about it that naïf old me sort of feels I don’t want to be part of our welfare state.

They want to remove the age criterion (civil servants are now so illiterate, they don’t know the singular of criteria, but I do) and comment that the combination of the age limit and different contribution requirements for the longer-term benefits means…

that around 80 per cent of Bereavement Allowance recipients and 46 per cent of Widowed Parent’s Allowance recipients do not receive the maximum payment.

As a result they suffer from greater uncertainty, which is bad when they are already suffering from the ‘loss of control’ in bereavement and emotional turmoil which means they don’t take in how the benefits are calculated. Alongside the ‘conditionality’ approach, I find this claimed concern with people’s feelings a bit hard to believe; it feels out of place in the generally callous style of the text. Perhaps they should give their consultations to social workers to vet for niceness, as well as the Plain English people for readability. Or perhaps they don’t feel social workers are nice enough nowadays to make a difference.

Then, as we know, there is a plan to have a universal benefit the same for everyone, to simplify the system, and the aim will be to have bereavement benefits alongside this. So most regular provision will be from the universal benefit, if you are eligible for it. However, they did research which shows that most people suffer a period of disruption in the immediate aftermath of bereavement and are proposing to target these benefits there.

There are two options they are consulting on:

1                    Pay an increased lump sum payment in the region of £6,000 for all claimants without dependent children and £10,000 for claimants with dependent children

2                    Pay a lump sum in the region of £3,000 and a monthly allowance of £250 for a period of 1 year for recipients without dependent children; and a lump sum in the region of £5,000 and a monthly allowance of £400 for a period of 1 year for recipients with dependent children.

Obviously option 1 would be quick and easy, while option two would maintain the security of a sense of support for a longer (but not too long) period. The sums proposed seem decent and realistic.

They are also consulting about whether to simplify the contribution requirements to whether the deceased partner contributed for the tax year before the death; the problem with this is that if they were palliative care patients they would have been ill, so they might well not have made those contributions so close to the date. Another option is to remove the remarriage disentitlement, on the grounds that they would not be paying the benefits for very long and it is unlikely that most people will be ready to partner up again, so they simplify the arrangements (and reduce civil servant time and the length of application forms) – always a good thing. This of course would generally be true, although I’m sure any palliative care social worker can tell you about the widows, or more often widowers, who have lined up the replacement partner well before the death. Perhaps even the DWP doesn’t have the life experience to be aware of that sort of thing.

Department of Work and Pensions (2011) Public consultation: Bereavement Benefit for the 21st Century. (Cm 8221) London: TSO.

The consultation document on the web: http://www.dwp.gov.uk/docs/bereavement-benefit.pdf

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.

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).

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.

Back from an interesting conference last Friday run by the University of East Anglia and the journal Ethics and Social Welfare on Confidentiality and Collaboration. Some very thoughtful contributions from experienced people mainly from safeguarding. Of course, the worry in that field of practice is that people’s professional rules about confidentiality prevents them sharing concerns about children and vulnerable adults at risk of abuse and neglect. But the law and all professional codes of ethics and practice require disclosure of concerns to colleagues to prevent offences and risk to others. This is really not difficult. Is someone at risk? Then disclose your concerns; at least at the outset we are only talking about conversations with professional colleagues who have the same objectives of public safety and concern for the people we are trying to help.

However, my view of this emphasises the importance of ‘informed consent’ as the answer to many confidentiality problems. One contributor was right in saying that I think informed consent should be threaded through our practice; I thought this was a nice concept. After all, it is contained in most social work codes of ethics, but I don’t think it is emphasised enough in practice. See my Humanistic Social Work: Core Principles in Practice, (Palgrave Macmillan, UK; Lyceum, USA). Chapter 2 promotes informed consent as an important way of offering accountability to service users and professional colleagues as well as to agencies.

For Humanistic Social Work in the UK and Europe: http://www.palgrave.com/products/title.aspx?pid=497063

For Humanistic Social Work in the US: http://lyceumbooks.com/HumanisticSocialWork.htm

(You get some free chapter downloads from the US site).

You might find this interesting: it’s a case study of Madge, using a person-centred style of documentation about someone engaged in end-of-life care. My comment on it would be thatsome people might find this a useful format for asking questions that focus on what a person wants in their dying phase (and is a format for advance care planning, which usefully does not have too much of a focus on advance decisions, a failing of some of the palliative care based advance care planning processes). Helpful for family members (although I wonder if some family members who are less open might find it too personally critical, and therefore whether everyone would want to say some of the things that she does about what she wants and how she does/does not want to be treated).

Professionals might need to be more challenging than Madge wants them to be – that’s sometimes their job. but sometimes it isn’t. The extent to which the job is to challenge people’s preferences, particularly in end-of-life care, deserves some careful thought. Coming to the end of life is a new personal experience for everyone, but which many professionals have good knowledge and eexperience from the outside. The current orthodoxy that people should particpate and direct the serviecs that they receive runs the risk of becoming a tyranny that stops professionals from exercising critical judgement based on their professional knowledge and experience but which may challenge services uers’ beliefs. If a professional never challenges, what is the point of their professional role?

The case study: http://www.helensandersonassociates.co.uk/media/60834/madges%20story.pdf

Information leaflets in a hospice service

Information leaflets are a bit taken for granted. You often see them on the walls of service-providing organisations and some hospitals and public agencies have information services. How do they get there? How are they selected? How are they replenished? My experience, over years of creating them and maintaining noticeboards and other ways of providing public information, is that what appears and how it is updated is often pretty random; there will always be useful things that aren’t there and un-useful things that are. Also, the leaflets will be updated or not or not yet. It’s often a matter of personal interest by members of staff.

Macmillan Cancer Support has made a speciality of information in recent years, and merged in 2008 with Cancerbacup, which used to provide printed and later on internet information on cancer. They have a good website, which is so useful you wonder why organisations need to provide their own information. You can find it at: http://www.macmillan.org.uk/Cancerinformation/Cancerinformation.aspx

Of course, Macmillan is only about cancer, and palliative care is like all those heavily advertised shops – it’s ‘so much more’. Some other sources of information are:

The Dying matters website, which tries to raise public awareness of the fact that we all die and are all bereaved and to improve competence in dealing with this human reality in our everyday lives: http://www.dyingmatters.org/. This contains most of the information for the public that used to be on the NCPC website.

The Help the Hospices Hospice Information website: http://www.helpthehospices.org.uk/about-hospice-care/. Aside from having a reasonable account of what palliative care and hospices are, it also has good resources for carers (originally derived, it has to be said, from work withSt Christopher’s).

A mini-survey – what is there at St Christopher’s

So with all this information available, why are information leaflets still provided by health and social care agencies, and in particular hospices. The answer: partly because they have to tell people about how to engage with their own services, and partly because the need to interpret general information in accordance with the style of the organisation and the views of the clinical staff providing the service.

I looked at the St Christopher’s leaflets and did a bit of an analysis to check this out.

The first point is that that they tell you who they’re for, some are for patients, some for patients and carers (one providing information for carers is for carers and patients) and some for patients and visitors.  Some do not say this, the leaflet about the founder, Dame Cicely Sounders, for example. One is for ‘healthcare professionals’ and contains general information about the services provided. Not, I notice, social care professionals – is palliative care now only healthcare? I think not, and expatiate on this later in this post. End-of-life care developments tell us that people without healthcare problems still need to think about and plan for the end of their life and the National End-of-life Care Programme Social Care Framework says that social care professionals should be more aware of involved.

Then there are the categories of leaflet. I divide these into seven categories.

The first is about the hospice and its history (like the Cicely Saunders one), and fund-raising, and I don’t list them. However, while these are not directly providing information as part of the services to patients and their families, they provide a general context and a ‘feel’ for the place, which may be important to patients and family members in getting a picture of the principles of what the hospice is about.

Category 2: leaflets that provide general information about the services provided:

-          Coming to St Christopher’s as an in-patient

-          St Christopher’s Home Care Service (and people who are admitted to the hospice and to the home care services get an extensive information booklet about all sorts of things, which include the text of many of the other information leaflets)

-          The Anniversary Centre – a sort of grand Starbucks social centre (but better cakes) with access to all the Hospice’s services

-          Information for carers

-          Community support volunteers (the volunteers befrienders)

-          Complementary therapies.

This category of leaflet is about informing people what they can expect from and what they need to do to benefit from the services. It’s very much about engaging with the particular service.

Category three: leaflets about medical matters:

-          Additional information on medicine used in symptom control

-          Frequently asked questions about morphine

-          FAQs about blood transfusions

-          FAQs about cardio-pulmonary resuscitation

-          Fluids and the use of artificial hydration.

these leaflets are about being clear how the medical staff interpret various controversial issues in palliatrive care in this particular hospice. The last one moves into category 4: understanding what’s happening to you. It explains why this palliative care service, like many, reduces the tubes runnning into a patinet once they are clearly within the last phase of dying. Many members of the public think this is like starving people to death, so it’s important to explain it.

-          Coping with dying (this covers what happens as someone moves towards death)

-          Why won’t they eat?

-          Difficulty sleeping.

These are mainly about things that many members of the public woryy about, and move again into category 5, which the professionals call ‘infection control’, but I call them ‘managing some of the medical nasties’ that you mighthave heard of:

-          Healthcare associated infection – how you can help reduce it

-          Methicillin resistant staphylococcus aureus (MRSA)

-          Clostridium difficile (C. Diff)

-          Barrier nursing.

Then there’s Category 6, ‘official stuff’:

-          How to complain or comment about our services

-          Transport and St Christopher’s Anniversary centre

-          Cornea and tissue donation.

So are there any social care related ones? Category 7 is my any other (but mainly social care related) leaflets:

-          Advance care planning – this tells you about it, and points to the ACP booklet, which provides a format for writing an advance care plan.

-          Consent – what you have a right to expect; this is mainly about consent to treatment and refusing treatment, but also covers things like seeing students and taking part in research

-          Choosing and moving to a care home

-          Cognitive Behavioural Therapy

Taking this as a little research project, one thing I found interesting is that I got this pile of leaflets from the main stock of leaflets and the (slightly different) selection from where the home care teams operate from. I know that there are leaflets about coping with bereavement and the hospice’s bereavement services, but these are not in the main stock. Presumably they are made available at the time they are required from a stock kept somewhere else.

Social work in hospice information

What about social work in this panoply of information? I was struck by the way in which this material is very health-related. Even though the social work, welfare and bereavement service is extensive and a major slice of the hospice, there is no leaflet about it. There is also no leaflet about the spiritual care services. However, these are covered in the very extensive information for patients and carers. There’s a little bit about social workers and welfare officers (who provide a welfare rights service) and stuff about the spiritual care and bereavement services in the information for carers leaflet and rather less in the home care service leaflet. There is often a mention of social workers as part of the service in other leaflets.

One of the reasons for this is the healthcare related priority. The history of palliative care derives from trying to improve medical care at the end of life and integrate pain and symptom control together with excellent nursing care for very sick people as part of a wider conception of the end-of-life being concerned with emotional, psychological, social and spiritual issues in peoples’ lives. It is still very much a health care service and a specialised provision. But it could have been and perhaps should be a much more community-oriented service. Probably this is partly a historical thing: Britain is unusual in having so many hospices based in buildings; the US has a much higher proportion of community provision. There will be a long-term shift towards greater non-health community care for the end of life, as the doctors have got so good at curing serious illnesses, turning many cancers into long-term conditions, and, alongside other healthcare professionals, so much better at managing long-term conditions. Eventually this will probably mean that end-of-life care will become largely non-medical, with the medical and nursing care inserted into broader long-term conditions rehabilitation and treatment.

Another reason is that healthcare information is so concrete, whereas it is quite hard to write a sensible information leaflet about psychological, spiritual and social care matters. But the ‘choosing and moving to a care home’ and the ‘cognitive behavioural therapy’ leaflets suggest that this is possible. In social care we ought to be working harder at providing concrete public information for people using our services. It should be possible to explain more concretely what social workers do and why, in the way these medical leaflets do. This would make social work a more important aspect of the services that it is part of. We could also make clearer what some of the issues are about the problems that soical workers help with; in this case, for example, why children need help in understanding the fact that an important relative is dying.

One of the reasons for going into the information leaflet business is the stigma against social care. Its history has been very much a dealing with the mad, bad and ‘dependent scroungers/exploiters of our welfare system’ service. But the increasing focus on long-term conditions affecting the huge population of older people gives an opportunity for a reinventing of social care, much as palliative care reinvented care for ‘the dying’ over the past fifty years. We are often providing valued services for the majority in the frailer periods of their lives. And providing clear, specific, and brief information could make the general public think again about how they actually value social care.

Information and CancerBacup

If you’re interested in history, there is a brief history of CancerBacup, the cancer information service at http://www.macmillan.org.uk/Documents/AboutUs/WhoWeAre/History/part4Timeline.pdf; also information about the founder Dr Vicky  Clement-Jones, a research doctor who had ovarian cancer, at: http://www.macmillan.org.uk/Documents/AboutUs/WhoWeAre/History/part3VCJBiography.pdf. This originally stood for the British Association of Cancer United Patients, but also handily implies supportive ‘backup’. It always reminds me of the lovely Lancashire town of Bacup (pronounced ‘bay-cup’).

And I’m back to the publication of my new book in the US by Lyceum Books (UK next year from Policy Press):

Citizenship social work treats older people as equal citizens with everyone else, not as irritating past-its dependent on care from others. That means age-proofing universal services, such as leisure centres, so that older people can use them comfortably, and mainstreaming older people into all sorts of other provision from which they are excluded. It means a working so that creative personal development is still possible even for older people and we do not take for granted that they are a burden on the young.

There are lots of practice things that you can do with older people to help them be fuilfilled human beings. If only 20% in their 80s have some dementia, it follows that 80% are not mentally frail. Why not act as though all older people are capable of self-fulfillment?

Readers in the Americas can get it from the publisher: http://lyceumbooks.com/CitiznshpSclWrkwOldrPpl.htm

Readers in the UK, Europe and the Commonwealth will eventually be able to get it from Policy Press early next year (I’ll remind you when):

http://www.policypress.co.uk/display.asp?K=9781447301271&sf1=contributor&st1=Malcolm%20Payne&m=4&dc=6