Abstract

“A few decades ago, cancer illness was a topic shrouded in social silence.  Today…stories of cancer illness have found a place in our culture…The emergence of this discourse means that those who become ill with cancer can expect some degree of acceptance and understanding (Kleinmann, 1988). The same cannot be said, however, about all those who survive cancer. Despite the interest that is often generated by stories of survival…there still remain unresolved tensions for those who have lived beyond the acute phase of extreme experience (Frank, 1995)” (Little et al, 2002).

This study, inspired by my practice as a social worker in the field of palliative care, seeks to uncover and explore these “unresolved tensions” in the lives of those who have experienced cancer as a long-term condition. By means of conducting semi-structured interviews with 18 people who could be described  as ‘living with and beyond cancer’, and analysing these narratives through a grounded theory approach, I sought to identify the meaning of this experience for these individuals, with the aim that these findings would inform future policy and practice in this sensitive area.

The themes that emerged from my study were that, in the main, individuals experienced cancer as not only life-threatening, but also life-changing,  not only in terms of how they developed in terms of self-awareness, but also of how they related to the world around them. Issues of hope and fear are explored, along with the meaning of support and spirituality in the lives of the respondents, and the new perspectives that resulted from the experience of facing one’s own mortality and ‘living to tell the tale’ (Stacey, 1996).

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.

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

Putting death in the context of a whole life with its joys, achievements and strangenesses is important; othewise what you get is a death misery memoir or awfulising about the services or what some professional said. Death is only important in the continuity of the life with which it connects.

And we’ve had too many misery memoirs of late – you know the sort of thing: how dreadfully poor we were, how our father beat us and so on. And how we rose above it and achieved. Like many people, I don’t want to wallow in the past misery that someone experienced. What I always remember when I read them is all the people I’ve worked with who went through terrible experiences in their families and their lives and who actually did not come out of it into the sunny uplands of international best-selling authordom; most of the people I’ve worked with who had rotten lives and were abused and oppressed by the people and public services around them stayed that way for most of their lives. They got very little out of this world that those of us who are richer or had better chances are living in.

Some people have begun to say the same sort of things about misery memoirs. I think most people thought that Joan Didion’s 2006 book ‘A Year of Magical Thinking’ was an inspiring, thoughtful account of her responses to her husband’s death and could inform everyone’s responses to similar aspects of their lives. At the same time her daughter was also dying, and a book published this last year ‘Blue Nights’ is not exactly a death and bereavement book, but is more about ageing and her relationship with her daughter. However, some people at least thought this was exploiting these events in her life too much; more than we wanted to know. This was so even though, skillfully written, they view a broader canvas than the death that generated the thinking and feeling that they explore. So, again, more about the interaction of events in our lives.

So are we encouraging people to express publicly more than we want and need to know? We have found at St Christopher’s, in recent years, that artistic expression through music, art, craft and writing can be a powerful way of helping people explore and value the experience of their lives and their deaths, and to learn about others’ experiences. The result of these expressions is an artistic product, which represents that person, their experiences and their thoughts. But many of the products are either personal or deal with wider aspects of life. I reproduced a poem from one of them in my book written with Margaret Reith ‘Social Work in End of Life and Palliative Care’: it expressed how someone in the building trade who was now ill missed the buzz of working and getting results from his work. So yes about the experience of dying, but about that experience within the mainstream of a life.

I worry about too much wallowing in the death experience, even though I know that people value using their artistic skills to work on their experience.

You can see information about the competition here: http://www.dyingmatters.org/finalchapters

I ran into Kamila, a graduate from the Wroclaw school of social work who had a placement at St Christopher’s a year or two ago and on the back of it is now a volunteer organiser at the Wroclaw hospice – I’ve been there, it’s an attractive new building among trees in the grounds of a hospital on the outskirts of the city.

An interesting paper in the book from Marian Niemiec (Marian is a boy – he’s a priest) describing the struggle to get a hospice going in the Opole area – getting the support and finance together has taken most of a decade, although a home care service is already operating. I had some minor involvement at an earlier stage, visiting the gutted school, a distinguished redbrick building, they were converting and appearing on Polish tv to promote their attempts to extract money from various sources. I’m glad they’re almost there – he told me at the conference that they will be open by next May when I visit again.

Just one sign of the struggle of so many people to introduce palliative care across the world.

Interesting that the book and the conference was a production of the public health department of the Medical University in Wroclaw (I’m not attempting Polish transliteration). Palliative care is very mnuch a public health iniaitive in the World Health Organisation’s eyes, and so it should be: successful palliative care prevents so much distress in people’s lives by increasing families’ resilience to later stresses and strains.

The book is ISBN 978-83-62640-24-9

From: Publishing house WCM

Plac Mikolaja Kopernika 4/6

45-040 Opole

Poland.

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=

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).

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 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’).

It is relevant for palliative care and social work  for the main reason that the debate was not about what is most important. Most important are the increasing number of older people who are getting more frail and approaching the end of life, and have other long-term conditions. All this debate was mainly about political views about whether increased competition and increased private providers will be good for more effective care. No doubt there will be more private providers and and more competition if the Bill in its present form passes, because everything about the government’s and the Secretary of State’s attitude suggests that this is important to them and it will therefore happen by hook or crook. This is what happens in our poitical system: the people in power get their way by swinging the system slightly in favour of the things they want; not that increasing the private contribution was much less important to Labour’s health tsars during the period of the last government.

It does not seem that there will be much protection for the increasing population of older frailer people and others who will need longer term care. The debate did not address that directly. Therefore we can expect their position to worsen; care for them will slow up and go missing. Any amount of coordinating less money will not solve that. The likelihood is, however, that what one minister said will also be true: most long-term health providers will not be doing a lot of private patient stuff so nothing much will change for most people with long-term care needs. They will be getting the best they can out of a slowly-deteriorating system that does not take much priority political notice of their needs, while the whizzies with their acute care will be making money from the people who can and who want to pay, for the people who want to get more money for being involved in healthcare.

Some of the debate was about balancing competitiveness with collaboration; critics think the government has still not ensured that collaboration is more important than competitive markets. And that’s really important for palliative care patients and social work service users who also need a good NHS service

Most of the huffing and puffing frankly sounded like old-style political skirmishing over very little, rather than transformational change for the people palliative care and social work deal with: see what you think [my comments in square brackets].

The first group of amendments were about the vexed question of whether, to what extent and in what ways the government’s aim was to privatise the NHS. You can see this debate at:

http://www.publications.parliament.uk/pa/cm201011/cmhansrd/cm110906/debtext/110906-0001.htm#11090649000003

It was tetchy. The Secretary of State discussed five main changes about this. The first issue was what would happen if a service (such as a foundation hospital) went bust.

First, the Bill puts clinically led commissioning at the heart of securing high-quality services for local populations. It is therefore right that commissioners should have a leading role when continuing access to services is threatened. Our amendments therefore strengthen the role of commissioners. For the first time, commissioners will have an explicit role in working with Monitor to agree plans to secure continuity of services. [Continuity of services means carrying on with providing somehting if the healthcare provider - eg the local hospital - collapses in debt or for some other reason.]

Secondly, commissioners will need to be supported in acting with providers to ensure that they have access to the scope, quality and choice of services they need. It is about promoting high-quality, effective and integrated services, as set out in clause 58. This will be the task of Monitor. If need be, when continued access to services is threatened because of failure occurring in a particular provider, Monitor will have a range of actions it can take. For example, it could take action to secure sustainability of essential services by adjusting prices. This would be necessary where a provider is otherwise unable to cover the costs of essential services—for example, because of lower patient volumes in more remote areas of the country.

Thirdly, if a provider gets into significant difficulties, we have provided Monitor with powers to be able to try to turn around the provider. The aim would always be to support the recovery of the provider, wherever this was possible. Specifically, the amendments require Monitor to maintain an ongoing assessment of risk to the continued supply of NHS services. Monitor must then intervene proactively to help a provider to address problems and, where necessary, agree contingency plans with commissioners.

Fourthly, we have put in place provisions to deal with the rare event of a provider no longer being sustainable in its current form. In that instance, the priority must be to secure continued access to the services patients need. [But not, you notice, continuation of the present provider, so if my local Hospital goes under they can call someone else in; possibly one of their private friends] This protection is particularly important in relation to foundation trusts, which of course are the principal providers of acute, emergency and specialist hospital services.

Fifthly, it is essential that political accountability runs through what hon. Members will all know is central to our responsibilities to our constituents. Our plans therefore strengthen political accountability at both the local and national level. At a local level, the amendments enhance democratic legitimacy by extending local authority scrutiny to all NHS services [this could in the end, if the local councillors and their, mainly social care, advisers do a good job of demanding a health service that is locally responsive and integrates with social care - they could push NHS people to respond to local social care need better, rathre than accepting this constant winge that social care does not help meet NHS objectives]. That is in contrast to previous proposals, where only designated services would have been subject to such scrutiny. At a national level, we will establish a process for the Secretary of State to veto proposals, in individual cases relating to unsustainable foundation trusts, if he decides that they do not secure continued access to NHS services and, as a last resort, to intervene where he believes that the NHS commissioning board or Monitor has failed to discharge its functions.

This is the comment from Frank Dobson, the former Labour Health Secretary:

To ask the essentially collaborative health care system in this country to turn over to being competitive is a bit like asking the Meat and Livestock Commission to promote vegetarianism: it is simply not what people want to do; it is not their approach and nor should it be. It remains the case that Monitor is still rigged in favour of promoting competition. Let me point out…that clause 58(3) states:

“Monitor must exercise its functions with a view to preventing anti-competitive behaviour in the provision of health care services for the purposes of the NHS which is against the interests of people who use such services.”

However, it does not say that “Monitor must exercise its functions with a view to preventing competitive behaviour in the provision of health care services which may be against the interests of the people who use such services”. Apparently, then, there is a basic, intrinsic and fundamental assumption that competition must be beneficial and non-competition must be harmful. If the Government say that Monitor is neutral, it should be given a neutrality in respect of competition and non-competition. …the unfair competition of some of the independent treatment centres was harmful to and threatened the services provided by neighbouring NHS hospitals. There is clear evidence here of problems within the private sector.

I recall that, a few years ago, United Health—a subsidiary of the US United Health—took over three GP services in my constituency. It bid that it could provide the range of services for less than the local GPs, so it got the contracts. It has not complied with all the conditions that were set, but in the end, the primary care trust decided that it could not take it to court because it would be such a lengthy and expensive exercise and it feared that the PCT might not win. Not content with that, United Health recently announced that it was selling the franchise to another private outfit. It did not consult the staff. It did not consult any elected local representatives—neither myself nor councillors. Above all, it never consulted the patients. These private sector outfits regard patients as part of the chattels that they can dispose of to maximum benefit and maximum profit.

That illustrates the fact that if we are to have contract-based provision of services, a huge amount of lawyer effort will be put into trying to draw up watertight contracts. What one lawyer thinks is a watertight contract, another lawyer will make a leaky contract by puncturing a hole in it, and we will go over to the system in the United States, where zillions of dollars are spent on court challenges or settlements with the providers of health care.

Furthermore, there is virtually no major American supplier of health care that has not been indicted for defrauding federal taxpayers, city taxpayers, state taxpayers, doctors or patients—and sometimes all five. I thus asked the Secretary of State whether he would rule out giving any NHS contracts to any organisation that had been indicted for defrauding people in another country. He gave me about a page-long answer, which could be summarised as, “No, he would not rule them out.”

We are thus talking about the possibility of European competition law being used to force our Secretary of State to allow people to give contracts to American companies whose greatest claim to fame is that they have defrauded innumerable Americans. I think that that is intolerable. I would have thought that all these anti-EU Conservatives would have found it rather embarrassing to think that European law was going to be used to allow fraudulent Americans to get contracts working in our national health service. All those things, however, will be possible under the system proposed by the Secretary of State.

Liz Kendall (Labour) made some related points:

The Bill establishes Monitor as an economic regulator, modelled on the same lines as those for gas, electricity and railways. The explanatory notes make this explicit. Page 85 states that clauses in part 3 are based

“upon precedents from the utilities, rail and telecoms industries”.

Indeed, in an interview with The Times earlier this year, David Bennett, the new chairman of Monitor, confirmed that that was the Government’s plan, saying that Monitor’s role would be comparable with the regulators of the gas, electricity and telecoms markets.

Labour Members have consistently argued that such a model is entirely wrong for our NHS. People’s need for health care is not the same as their need for gas, water or telecoms. There is a fundamental difference between needs, ability to benefit, the complexity of services and the fact that they are far more interlinked. The NHS is not a normal market. It is not like a supermarket, or like gas or the railways. There are much more important issues at stake.

…The Bill will guarantee that the NHS will be treated as a full market, and the providers of services will, for the first time, be treated as undertakings for the purpose of competition law. The Secretary of State said that the Bill would not increase the applicability of competition law, but the Minister of State confirmed it when he told the Committee:

“UK and EU competition laws will increasingly become applicable…in a future where the majority of providers are likely to be classed as undertakings for the purposes of EU competition law, that law…will apply.”––[Official Report, Health and Social Care Public Bill Committee, 15 March 2011; c. 718.]

Andrew George (Labour) talked about some of the amendments he had proposed:

That said, the purpose of my amendments…is primarily to ensure that Monitor’s role to ensure that anti-competitive behaviour is kept in its box is balanced by looking at the impact of competitive behaviour that might undermine the ability of NHS services to collaborate. The underlying purpose of amendments 1207 and 1208 is to neutralise or balance the new duty on Monitor to prevent anti-competitive practices that are against the interests of the people who use the services—in other words, patients—by also applying a duty to prevent anti-collaborative practices that would have the same effect.

…we need to ensure that we sustain the essential services. …certain services clearly need to integrate. An example is acute emergency trauma centres. If the orthopaedic, paediatric or ophthalmology services were removed from such essential centres, their ability to deal with a wide range of emergencies would be fundamentally undermined. They serve populations of between 250,000 and 500,000 people—sometimes more—and they are absolutely essential. We must ensure that we do not end up with a regulator that allows them to be undermined by imposing a duty on them not to act in an anti-competitive manner.

The House then went on to discuss the private patients’ cap. Emily Thornberry (Labour) made the crucial point:

…Baroness Williams…wrote an article…in which she says:

“One thing that remains…is the decision to lift the cap on private beds in foundation hospitals. Not only could that mean that many of our finest hospitals would gradually become private, it also means that inevitably foundation hospitals would be subject to European and British competition law.”

…the argument is about whether we should have a cap or not. If the House votes tonight to lift the cap, our constituents will ask how it can be that their representative has voted for a clause that allows private patients to fill up the national health service hospital paid for by those constituents’ taxes so that they will be pushed out of it.

The Health Minister Simon Burns defended the proposed change:

The cap is arbitrary and unfair. Several NHS trusts that are not subject to the private patient income cap have private incomes well in excess of many foundation trusts. Last year, four of the top 10 private income earners were NHS trusts—that is, without a cap. A few FTs have high private incomes simply because they did a few years ago. The cap locks FTs into keeping private income below 2002-03 levels and means that last year about 75% of FTs were severely restricted by caps of 1.5% or less. Meanwhile, patients at the Royal Marsden benefit from its cap being 31%, and it has consistently been rated as higher performing by the Care Quality Commission [part of the reason for this is that the RM does a lot of research and the cap allows some research and other activity].

…FTs will retain their principal legal purpose—to serve the NHS. This means that the majority of their income will continue to come from the NHS. With no shareholders, any profit they make will have to be ploughed back into the FT, and so will support that purpose of caring for NHS patients. The vast majority of FTs have little, if any, potential to increase private income, never mind the desire to do so. For them, NHS activity will remain the overwhelming majority of the work they do, if not all of their work. It is extremely unlikely that even the most entrepreneurial FTs with international reputations would seek to test the boundaries. Their commissioners, public and NHS staff governors would hold them to account in fulfilling their duties and serving their NHS patients.

Caroline Lucas made the ideological point:

I find it unacceptable that taxpayers’ money has ever been used to allow private patients to jump the queue and use NHS facilities. The history of the cap was all very interesting, but the bottom line is that it serves an important purpose, which is why it should stay. The Government argue that income from private patients is put back into the NHS and ultimately benefits the health service, but the reality is that when people become ill and need treatment, it is hard to justify asking them to wait longer because capacity in our NHS hospitals is being taken up by private patients. The bottom line is that an NHS hospital has to treat NHS patients, and I do not believe that we have adequate spare capacity sloshing about in the system to justify private queue-jumping into NHS hospitals.

…It is often argued that foundation trusts are about choice, but I would argue that such private treatment should be offered only when there is surplus provision in the system. It is one thing to talk about a choice of general goods and services, but it is enormously inefficient and massively costly to apply that kind of mentality to the health service. Now, we see the present Government trying to use the model introduced by the previous one to allow foundation trusts to do as they please, and lifting the cap on the income that can be derived from private sources.

The hundreds of constituents who are contacting me about this do not want private queue-jumping; they want NHS services paid for from taxation. The future of the NHS should be about developing whole systems, not isolated institutions, and private health care in the NHS should be phased out. The NHS needs to be about building networks across professional and institutional boundaries, not about creating new barriers. It needs to be about IT and information sharing, not reducing connectivity, and about getting more people treated in the community and in primary care.

Chris Leslie made an important follow-up clarification:

Long waiting lists matter because they are also the lifeblood of the private medical industry. We need only look at the advertising slogans of many private medical insurers to see how people with promises of “speedy service” and “getting your health situation sorted out quickly”. This, however, can happen in the context of NHS hospitals.

What we must do is ensure that we put the needs of NHS patients first. My worry about removing the private patient cap is that it changes the incentives relating to how the foundation trusts will work, putting revenue generation ahead of patient treatment. The allure of revenue will, of course, be there, but keeping waiting lists high is, in a sense, part of ensuring that revenue continues to come in. I want to see trusts focused absolutely and completely on reducing waiting times.