Monitor is the independent regulator of Foundation Trusts that run the hospitals that are allowed to be financially independent the while operating within NHS. As part of the government’s marketing blitz to persuade us all that competition under the new Health and Social Care Bill is going to be good for us all, it has said how it’s going to exercise its new role of being the financial regulator for the new-style NHS. They’ve clearly been told by the government that: ‘you chaps had better get onside’.

Unlike many (you would expect this really from people who already work for an organisation that works for a system that wants to dump rational planning in favour of competition), it sees no competition between competition and cooperation. Here’s the argument:

An example of one area where our role on price setting would be particularly relevant is in avoiding ‘cherry picking’. There was much concern that the Health and Social Care Bill would enable private providers to ‘cherry pick’ routine and less complex healthcare services that are cheaper to provide and more profitable. The concern was that this would leave the NHS to deal with the higher-cost, more complex and long-term conditions with inadequate remuneration, causing the destabilisation of local hospitals. A change has been made in the Bill to address this concern. This means that Monitor would be given a specific duty to set prices that reflect all underlying costs, so there should no longer be any cherries to pick….(p 3)

The Bill sets out that Monitor would be required to support the delivery of integrated services for patients where this would improve quality of care or improve efficiency. More consistent, co-ordinated and comprehensive care is especially important for groups such as the elderly, who may need continuous care or have long-term conditions and need to be in contact with a range of health and social care professionals. It is also important for those using specialist services – for example, cardiac and cancer care, and for those with long-term conditions like diabetes or asthma. In any of these areas, care will currently often be delivered by multiple providers. This creates a real risk that the care will be fragmented and that one provider will not always know what another provider has done. The consequence is that a patient, at a time of considerable personal stress, will have to work out how and when to deal with different providers for different elements of their care. On top of the damaging impact on the patient, this can also lead to wasted time and money for the health service.

The new duty means that Monitor would have to consider how it can enable or facilitate integrated care. While it would be for commissioners, working with local providers, to develop and fund better and more integrated patterns of care, Monitor’s role as the sector regulator would be to work with others, particularly commissioners, to remove any barriers and consider how to enable integrated care provision where this is in the interests of patients. For example, there may be barriers to better patterns of care that Monitor could help address. We might, for example, look at ways we can ensure that standardised information is shared between provider organisations so that patients do not have to undergo the same tests on several occasions, or we could look with the NHS Commissioning Board at how to use the payments system to incentivise better integration.

Monitor has always been clear that we support better integration of health services where this is of benefit to patients. We believe that there are significant opportunities to promote the interests of patients through the integration of care and are fully supportive of any changes to the reforms that make this clear and help us to make this happen. It is our view that competition and co-operation are not mutually exclusive and that competition does not and should not have to come at the expense of beneficial co-operation. (pp 3-4)

What this says is, not that they are going to promote cooperation and integration of services, but they’re going to use payments in the competitive system so that it incentivises cooperation. This does not address the in-principle concern that many people have that competition never encourages integration.

It also uses the old liberal (not LibDem) market-forces chestnut that people can choose better if they have full information, for example about all the competing providers. This does not answer the point that they make themselves. At the point of choosing, a sick person has to go through all the business of finding out about and selecting services about which they have little knowledge and understanding. A little bit of standard information is not going to help here. My experience of families asked to go and find a care home for an older person in their family are shell-shocked, first by places that they instinctively think are costly but so-so in quality because they have not realised how expensive care is and how difficult it is to do well, especially when they’ve experienced a hospice that does do it well.

We’ve seen this week that apparently well-run banks like HSBC (well, they didn’t need bailing out the last time round) can let competition run away with them and fleece vulnerable consumers with unworkable ‘help’ in their old age. The care home sector will not be far behind, with the best will in the world, because it’s inherent in competition that people will try to make the best of their marketing rather than bring forward the genuine isues involved in very difficult personal decisions. Even the GPs doing good and being fair (see the last post) are going to splutter when people tell them they don’t want to be rationed thank you.

On the web: http://www.monitor-nhsft.gov.uk/sites/default/files/The%20Health%20and%20Social%20Care%20Bill%20-%20Monitor%E2%80%99s%20evolving%20role%20%5BInformation%20sheet%5D%2010%20October%202011.pdf.pdf

The government may not have got the Health and Social Care Bill through Parliament yet, but since GPs are slated as the people at the front-line of service rationing in the new regime, here is the GPs guide to rationing ethically. Apparently, you should aim to do as much good as you can, and if you can’t do good, be fair. And tell your patients when your decision is because you are rationing and not because it’s best for them. An interesting guide to the dilemmas of rationing, and since social workers also ration services, they could not do better than giving it a good read.

Oswald, M. and Cox, D. (2011) Making Difficult Choices: Ethical Commissioning Guidance to General Practitioners. London: Royal College of General Practitioners

On the web: http://www.rcgp.org.uk/pdf/RCGP%20ethical%20commissioning%20guidance%20v1.pdf

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).

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

I’m back after working abroad for a few weeks, and I notice that the Department of Health website now has a tag cloud: see the picture:

So you see ’social care’, let alone ’social work’ there? Or ‘palliative care’? Or ‘end-of-life care’? Or ‘older people’? Clearly none of that bothers the DH.

This post looks at the House of Commons discussion about the Health and Social Care Bill on 6th September. As usual, a lot of what was going on was detailed technical stuff, but the first day of it was mainly about privatisation and competition, including the removal of the ‘private patient cap’ (the limit on the proportion of income-earning private patients a Foundation Trust could have). This is relevant for social workers because if the critics are right, poorer people who only have access to the NHS rather than the cash to buy what they need, or a job that gives them health insurance, are likely to find it slower and longer to get their healthcare than they have become used to in the last few years because priority will be given to privatecare and money-earning

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.

The final judgment has not been published in the Condliff case: this is the man whose PCT refused to let him have a gastric bypass, because he did not meet their standard criteria. He argued the human rights case of respect for his family and private life. The Court of Appeal agreed that it was clear that Mr Condliff’s family life was being adversely affected. The PCT’s IFR policy set the rules for making decisions in exceptional circumstances, but it did not allow non-clinical or social factors to be used. Social factors included ‘age, gender, ethnicity, employment status, parental status, marital status, religious/cultural factors’.

What the PCT was doing here was trying to be non-discriminatory in making its decisions. Therefore the court decided that Article 8 rights do not confer a right to have social factors wider than the directly relevant medical factors taken into account in service provision decisions.

Of course, it might be different in social services cases, where the whole raison d’être of funding decisions is social concerns. But it does suggest that social workers should focus on using their advocacy arguments with sympathetic professional colleagues, rather than trying to go to law.

But is this reasonable? Surely all decisions made by official bodies should properly take into account social factors, otherwise we cannot respond to inequalities.

Some more details at: http://www.lexology.com/library/detail.aspx?g=c73f5fe6-6952-45af-a4a9-baf5cbde2040&utm_source=Lexology+Daily+Newsfeed&utm_medium=HTML+email+-+Body+-+General+section&utm_campaign=Lexology+subscriber+daily+feed&utm_content=Lexology+Daily+Newsfeed+2011-08-12&utm_term=

The American healthcare system wastes lots of money; a lot of people think this and it is a worrying message for people contemplating a more privatised system in the UK. But what is the truth of the matter? The Economist, my favourite magazine, while being indisputably on the side of the privatisers, argues that there is a fundamental structural reason: the American system is set up so that the more services a healthcare provider provides, the more it is paid. So there is an incentive to find ways of providing serviecs whether people ‘need’ them or not – ‘need’ in the sense that the UK National Health Service might talk about need.

You can look at a small bar chart and a comment which says why poorly administered privatised healthcare is a rip-off. Will it be any different if the present government’s UK reforms go through?

http://www.economist.com/blogs/dailychart/2011/06/us-health-care-spending

Apologies that the blog did a tizzy last week, while I was on holiday, and I’m tweaking the post on the palliative care funding review so that it reappears again today.

I’ve finally got to an overall view of the Palliative Care Funding Review, but inevitably my view of it is affected by the almost simultaneous publication of the Dilnot report on the funding of adult social care, not to mention the fairly recent Law Commission final report on Adult Social Care Law, which looks set to lead to legislation next year. People with a focus on palliative care alone may wonder why I should think these other reports relevant, but constant readers of this social care/palliative care blog will know of its aim to place palliative care within the context of wider social and health care.

The palliative care funding review here: http://palliativecarefunding.org.uk/wp-content/uploads/2011/06/PCFRFinal%20Report.pdf

The Dilnot report on adult social care funding here: https://www.wp.dh.gov.uk/carecommission/files/2011/07/Fairer-Care-Funding-Report.pdf (there are two other volumes: http://www.dilnotcommission.dh.gov.uk/2011/07/04/commission-report).

The Law Commission report of adult social care law here: http://www.justice.gov.uk/lawcommission/docs/lc326_adult_social_care.pdf

The point is that all older people know they are approaching death, so they will be receiving some degree of end-of-life care, mostly by looking after themselves and their own affairs, but also from their families and friends. Mostly, they will continue with their personal aspirations for their lives, supported by the ordinary social and health care they receive. That will be the major element of the formal help they get; specialist palliative care will be a minor element for the few. So, we should really not start from a funding review of a rather specialised, healthcare-focused provision. Instead, what we should be doing is starting from personal aspiration, informal and general social and health care during the period running up to the end of life, and seeing where palliative care for advanced illness fits. But the Review is here and central to the aims of this blog, so here goes, although to compensate for the conception, which comes from the Review’s focused terms of references, I’m going to include some compare and contrast with how I would look at it from a social care point of view.

Palliative care funding, Dilnot’s funding proposals and the future of end-of-life care

Reading the Palliative Care Funding Review alongside the other reports, Dilnot especially, the surprising thing about it is how old-fashioned it seems. The reason for this is, I think, that it is trying to do what nobody else is thinking about, or has thought about for quite a while: get the government to fund a service more. The reason for trying to do this, and for the government having commissioned the report presumably, is that the Conservatives have been fairly upfront in saying they want to fund hospices, particularly children’s hospices, properly. This is largely founded on the same sentiments that get big charitable donations for hospices and other palliative care services such as Macmillan and Marie Curie nurses; it is recognisably a good thing. So there is a bit of a policy impetus and an opportunity there. It seems a sensible move to grab the opportunity and see if we can get a bit further with palliative care funding.

Moreover, the ConDems know that there is a lot of charitable money coming into hospices and they want to encourage services that achieve this; it’s part of the big society agenda. So you could argue that palliative care is getting the reward for its big society achievements over the decades. However, knowing that the money is there probably means that the government don’t want to spend any more on them; rather they would like to get more out of them; that is also the big society agenda.

I don’t think it is an unmitigated political good that the government has recognised the amount of charitable money coming into palliative care. If I were Andrew Lansley, I’d be looking at how I could get that money transferred into funding my mainstream healthcare services. After all, people are usually happy to donate charitably to a hospital or a local healthcare service that they find useful: I don’t know that they particularly care whether their local hospice or home nursing service is run by an independent organisation so long as it is doing the job. Some years ago I remember giving a donation on the retirement of my GP for a new local hospice that, it turned out, was actually part of the local general hospital. It got its funding with no problem, and I suspect the same would be true if the NHS went all-out to define extra end-of-life care bits in its mainstream services and get charitable donations for them.

So there is a risk that moving along the path of greater involvement in the mainstream NHS will lead to greater incorporation of independent provision into a dominating NHS commissioning process. In the end that might vitiate the independence that has served palliative care so well in maintaining its creativity and lightness of foot. The social work historian in me is reminded of the ‘cause and function’ debate in social work in the 1930s: once you’ve stopped being a movement to achieve something innovative, you shift into becoming part of the functions of the state, and a bit of pizzazz is lost in favour broader security of provision.

But, I hear you say, isn’t Dilnot also trying to get the government to pay more for a service? Hasn’t the main criticism been that it will cost the government billions when austerity is the order of the day? Yes, but Dilnot is addressing an issue that is widely recognised as a major social issue of the day, that the government has to do something about. Although, as I’ve already said in a previous post, the real problems will still not be here for a decade or more, so the government can follow the grand tradition in dealing with difficult issues and frisbee Dilnot into the long grass without difficulty.

Another thing about Dilnot, that’s not true for the palliative care funding review, is that it’s helping the government’s money problems because although Dilnot will cost more, it will tie co-payment into the social care system, so that it will become the publicly-accepted norm that people will make contributions for their care. This would be a great political achievement. They already make contributions of course, but Dilnot’s research shows that it is not widely accepted. The political gain in implementing Dilnot will be that the whole adult social care system would be set up to achieve public recognition that we as individuals have all got to pay for our social care, and, on top of that, we’ve all got to pay more than we have been assuming we are going to pay. And as the years go on, I have no doubt that the system will be tightened so that we will all have to pay even more as individuals; that process has been going on since the mid-1980s, when the care home system was privatised.

The palliative care funding review is not offering that to the government: it wants to incorporate free social care into palliative care, when Dilnot is taking social care the other way into people paying more for what they get. The fear must be that if Dilnot is implemented, tying social care funding into palliative care provision will lead to creeping acceptance of social-care-style co-payment for end-of-life care services, rather than the NHS assumption for free at the point of delivery. So it’s understandable that the palliative care funding review is trying to be very clear that this should all be done on an NHS basis. However, I think there is an opportunity open to the government here of saying: ‘Well, we’re moving into end-of-life care here, not specialist palliative care, so it’s more appropriate for it to be like social care’. My suspicion is that such a view might eventually (after the next election, say) not only be applied to end-of-life care but to all sorts of what is currently community healthcare provision: ‘It’s all a bit like social care, isn’t it? No reason that people couldn’t pay something towards it.’ I hope not, but I suspect so; the more so because I hear from the financial pages of my newspaper about the possibility of an L-shaped recession (austerity is going to go on for ever).

Moreover, the palliative care funding review is saying that there is wide inequity in the provision, so that the whole thing should be more coordinated and coherent. We can all agree with that, but any astute civil servant will know that making everything coordinated and coherent will probably mean that there will have to be more of it. This is because places that have not got much will have to be brought up to the more usual level of provision. The ‘more of it’ will cost money, and so there will be upward quality creep – very desirable from the point of view of patients and palliative care services that want to improve their offering (the ‘Review’s’ perspective), but not so good if you’re George Osborne and trying to save money.

Balanced against this, the ‘Review’ offers some possibilities to meet the government’s present preoccupations. First, by coordinating effectively it has been made clear by some of the Marie Curie projects used here as case studies that you can do a lot to provide a more comprehensive service in an area without too much cost push, by facilitating more efficient delivery of care. However, if I were an NHS commissioning group, I’d be worrying about stimulating too much demand that I couldn’t meet in straitened times. Second, and I think the major advantage that the ‘Review’ can offer the Chancellor as he views the Olympic volleyball finals from his study window in number 11, if you can really get palliative care going well in home care and other community settings, you can take some financial heat off the hospitals because it’s absolutely clear that effective community end-of-life care more or less stops the unnecessary emergency admission of dying people to hospital care.

Which brings us back to social care, because a lot of that community provision is going to be in residential care homes and require integration in community social care provision, and I think the detail of how social care will knit with what the Review proposes is unclear.

One of the important aspects of that is that the Review mixes together palliative care for people with advanced illness (a relatively limited provision) and broader end-of-life care (a universal requirement) with the aim of getting end-of-life care more accepted into the mainstream of community social and health care. The problem is that these are fundamentally different animals: what I think we should be about is knowledge and skill transfer. We need to transfer knowledge and skill from palliative care, so that end-of-life care can build up its knowledge and skill resources to provide what in many areas is a fundamentally new aspect of their generalised services. This is less about service funding and more about development work. Doing this will take away the resource pressure that arises from unnecessary hospital admission, as the Review rightly says.

But it should also reduce the need for palliative care services, because better general end-of-life care provision in social and health care will reduce the need for specialised palliative care except where there are complex advanced illnesses and complex social circumstances to deal with. Putting these two together, as the Review does, makes clear the connections, but I think it does not make the argument that palliative care is the senior service. It is currently the service with the expertise, but as a service once it transfers its expertise, the need for the specialist resource has to be looked at in relation to its more limited specialist role within the wider non-specialist provision.

So to some more detail.

Trying to get more for palliative care

What, then are the detailed arguments in the Review for developing end-of-life and palliative care?

-         Postcode lottery: there is wide variation in the funding, so that the minimum spend in PCTs is about £0.2m, the average spend is £3.1m and the maximum £21m. the cheapo PCT spent about £181 per death in their area, while the Rolls Royce PCT spent £6213. The average spends less that £1000 a death. I’m a bit doubtful about the extreme variation of these figures: while I believe the average, I suspect that there may be variations in what is being counted in different PCTs.

-         Complicated and variable funding mechanisms for hospices mean that there’s a block grant in many areas, spot purchasing sometimes and 97% of independent hospices thought that the NHS did not pay fully for their patients. All too true, but if an NHS commissioning body looked anew at that, they might decide that they would prefer to stop funding beds in hospices and spend more in the community, in care homes and in hospital palliative care, where the major lacunae are. As a result, it might be able to reduce a lot of demand on and criticism of its emergency services by having a more secure universal end-of-life service. More rational funding does not mean more for beds in hospices, although their part in community services might be secured.

-         Funding is further complicated. Palliative care is done in hospitals, hospices, people’s own homes (using GP and community nursing services) and care homes, and they are all funded through different processes. Not to mention the major (and largely unfunded) contribution of self-care and informal caregiving by friends and family. The Law Commission on adult social care law is recommending a reform of the rights of informal carers to assessment and service provision to improve their own well-being. If more government money is going on them, an NHS commissioning body might find it beneficial to focus on supporting informal carers and general community services. Again, simplification does not necessarily mean more beds in specialist palliative care, or a funding priority to palliative care responsibilities.

-         Crucially, there is a chance of saving money – always a good move to say this to governments…

-         …and it is because too many people are being admitted to accident and emergency units inappropriately, when if they were properly cared for in their own homes and in care homes they would not consume expensive NHS resources at the end of life and, even more wonderfully from a politician’s point of view, they would prefer it.

The last two items point to a virtuous circle: we could save money if we did what people like: better than a slap in the face with a wet gurnard (you’re supposed to be enjoying unfamiliar fish dishes so as to preserve endangered fish stocks; get the behind me codfish, and look with favour – but according to BBC Good Food, not with flavour – on scorpaeniform fishes in the family triglidae).

What is not clear is that savings in accident and emergency would pass to fund better end-of-life care: they are more likely to pass into the hands of Mr Osborne. So better end-of-life care might have to be funded from existing resources in palliative care.

Proposed new funding system

The last time work was done on this, we got to a system of paying for each patient for a period (perhaps about 12 days) in a hospice. This Review had research which has come up with a much more sophisticated model. Basically, the idea is that bits of the NHS that are treating people for a medical condition get the money for doing that, and when it is decided that they are also dying, they get another bit for palliative care services. It’s a bit like James Bond and the man from Smersh in a struggle on the clifftop: they sway to and fro between the condition money and the palliative care money, until they fall off the cliff, the man from Smersh dies (and so the money stops) and James meets a nurse and sails off in a rubber dinghy into the sunset. There’s a diagram of this – a wavy line goes up and down with more condition money giving way to more palliative care funding and then back again, as the patient’s needs change.

The amount of money is worked out on patients’ needs. These in turn are calculated by allocating patients to a category. The main thing is the stage of the disease (stable, unstable, deteriorating, dying); but added to this is whether they have a specialist or non-specialist provider, low or severe problems, their functional status (can they walk or sit up?) and age (over or under 60). This produces 13 classifications for adults. The same principles are applied to children, but I won’t go into the detail.

The first stage is that it is decided that the patients require palliative care; this means that they get the money for that added to their disease money. Every time they enter a new stage of the disease (pay attention: from stable to unstable, unstable to deteriorating or deteriorating to dying and so on), their service provider gets another slice of money.

There are two things about this: one is that the healthcare system is much more used to doing this sort of thing than social care. The decision about whether you require palliative care is the ‘surprise’ question (would you be surprised if this patient died within the next – whatever period you decide – perhaps 12 months?). Care homes and adult social care staff tend to ask that sort of question about their clients even less than healthcare staff (because they generally don’t have a focus on people’s overall physical condition) and they tend not to have the kind of good evidence that would mean that you can trust the decision, as you would trust a GP or district nurse thinking about it. In particular, it’s easier to ask if you have a clear medical condition and even more so if, as in palliative care, you have an advanced illness, where the stages of progression are well mapped out. I wonder if this will mean that people who are getting frailer in the community and mainly being looked after in social care will not get the palliative care money because nobody will be thinking clearly about their end of life. There is evidence that many people in care homes who pay for themselves do not get a lot of attention from professionals; for example social workers do not review them regularly because the local authority is not paying. So they might not get assessed. Alternatively, what may happen is that there will be a demand from adult social care departments for GPs to make this assessment, or ticklists will be set up for social care staff to go through to do the assessment. This could mean that the decision-making for people outside healthcare will be more rocky and inconsistent than the Review assumes. This feeds into my next point.

This system is a big incentive to put people on the palliative care money as soon as possible in their illness career. I reckon there will be phasing drift. Social workers, care home managers, and other commissioners will put people on this extra money as soon as they can. Who will the commissioners be? GPs and their friendly local hospital doctors and other healthcare professionals will be running the commissioning show, so there will be a financial incentive to get their hands on the palliative care money, and speed up the shifts to the later and more lucrative stages of the palliative care money. This means that people might be progressed up the levels of care quicker than necessary; not a good outcome for the psychology of patients in my view. Care home proprietors and social care staff will realise that if they can get someone on the palliative care money they will get enhanced funding and, if the Review’s recommendations are accepted, anyone they get onto palliative care funding will get free social care for which they would otherwise have to pay.

The report specifies various scales that will have to be completed for assessing the funding group, but as I frequently point out, scales are just forms filled in by human beings; they are not evidence. The people filling in these forms, and the people they are filling them in about, will have a strong financial incentive to look for reasons for extra funding for this patient.

Social care in the new system

Following on from the previous points, how social care is funded and organised is clearly going to be a big issue for many people moving into this end-of-life care system. The proposal is that social care will be a ‘clip-on’ to the palliative care money. Once someone is defined as ‘end-of-life’, all their social care would be paid for by the NHS.

The effect of this is that people defined as at the end of life would be accepted as being eligible for what is currently NHS continuing care funding. It’s a nice idea that people should get social care within their NHS services and indeed my experience of dealing with continuing care applications is that most people feel this is fair. Although the system distinguishes between healthcare needs and social care needs, most social care needs are off-shoots of health problems, and people find the distinction drawn by the present system non-intuitive. It is also true, as the Review rightly argues, that most people are beyond social care once they are receiving palliative care, so there should not be a massively increased cost to the NHS.  However, while I think this argument is right, I don’t think it is how continuing care is played by most commissioners at the moment. I know civil servants are rather gung-ho about their wonderful rational national assessment system for continuing care, but many people who are applying for it find that commissioners tend to resist very strongly too much drift onto full funding. Therefore, although if you look at the criteria, most palliative care patients should get it, and so the extra cost of this proposal is not great, the reality of how it is allocated means that actually many people are not treated as eligible and phasing drift and the increased comprehensiveness of a universal end-of-life care service may mean much greater demand to deal with. Moreover – back to the point that most people pay for their social care, and particularly for their care homes – this proposal will be very much at odds with the way in which the government wants to take the social care funding system, which is to get people to pay more, not less. I would be very surprised if the government will go along with allowing people to opt out of their own contributions and shift the burden onto the NHS; that’s not the signal that they want to give the public about being responsible for your own care.

Reading the document, I do not get a clear sense of what ‘clip-on’ means; the implication is that an extra sum to fund social care will be added to the palliative care money. But where is this money going to come from? NHS continuing care budgets? Or will it simply be a call on the palliative care money that you get at the different stages of your progression towards the dying phase. If so, money could actually be taken away from palliative care funding for, say, hospices, to fund social care costs. More likely, the whole thing will be lost in a translucent general budget allocation, which over time will be increasingly squeezed, so we will not be quite clear how much money is being allocated for each patient at all; it will all become very discretionary. Which goes against what the Review is trying to achieve.

Finally, the main focus of the Review is on funding the end-of-life care system, but just a question about social work (which,m as opposed to social care, is little mentioned in the Review), because it is not clear to me how psychosocial and social work needs will be met within a system like this. I think the intention is that formally assessed needs will be met in a coordinated system commissioned by an end-of-life coordinator from adult social care departments. When someone is defined as ‘end-of-life care’, the palliative care money will snap in, paid presumably to an end-of-life care coordination body in the area, commissioned through the healthcare system because that’s the focus of the report. So where a frail older person is receiving a continuing adult social care service, for example regular reassessment in their care home or community setting, will this be pulled out in favour of a new palliative care service? I suspect an adult social care department will ask for money and if they don’t get it, they’ll be over the hills and far away, because, the report says that social care is being paid for by a clip-on to the palliative care money, although not (in alignment with Dilnot) accommodation costs. The Review reports that stakeholder views saw social care, along with other non-healthcare elements of multiprofessional palliative care as it is currently conceived as something that should be ‘supported by a combination of the state and society’ (p 17). It’s not quite clear what that society might be or how much might not be funded by the state: presumably social care and related things would not be an NHS-funded provision, but resources would be recruited from elsewhere and coordinated by the NHS service, including the voluntary sector and adult social care departments. But if this is not funded, it may well be hard to integrate comprehensively. I don’t say this can’t be organised, but I don’t think the working together can be left to organise itself and I suspect it will mean money from the extra palliative element of the payment.

Well-being in end-of-life care

Which brings me finally to my concern about the way in which the Review rather elides major differences between the direction of the adult social care system as a part of a universal end-of-life care system and palliative care as a specialised service for people with clearly identifiable advanced illness.

As I look at the Law Commission on adult social care law, I see the proposal that there should be a legal focus on wellbeing in social care provision. It is also proposed that provision should come from a legal duty on local authorities to provide both a service user and carer assessment. It is not clear how this would interact with the single assessment for palliative care. The outcomes proposed for the legislation that an adult social care department will have to achieve are:

(1)   health and emotional well-being

(2)   protection from harm and neglect

(3)   education, training and recreation

(4)   the contribution made by them to society

(5)   social and economic well-being; and

(6)   securing their rights.

These are very broadly phrased and include some aspects which would be unexpected in health care or palliative care. Many of the broader outcomes would also tend towards the things that the palliative care funding review would see as provided by ‘society’ rather than the state (although this distinction is reported from stakeholders rather than pursued by the Review). However, note the inclusion of rights. The Law Commission points out that under the Human Rights legislation, people receiving care services under a well-being principle are entitled to demand their rights as follows:

Among other matters, it emphasises that the Article 8 rights of disabled people to participate in the life of the community and to have “access to essential economic and social activities and to an appropriate range of recreational and cultural activities”.

This is a quotation from a legal judgement. If we are to include social care into a palliative care service that respects patients’ human rights as defined in the proposed social care legislation, it will need to respond to needs very much broader than a healthcare definition of what should be provided in end-of-life care, while the Review, presumably because of its terms of reference, rather focuses on such a healthcare definition. The Law Commission assumes that a necessary outcome of a social care service is the provision of ‘social, leisure, communication, education and training activities’ for patients. While some palliative care services, St Christopher’s pre-eminent among them, have made great strides in including arts and personal development into what they provide in hospices, care homes and in the community, this is not generally what the NHS sees itself as there to provide, and what Mr Osborne will see himself paying for.

The end-of-life care provision proposed in the Review is firmly focused on financing healthcare objectives in alliance with broader NHS provision and commissioning. It is not clear that this is going to allow for the broad understanding of social care that human rights legislation and the proposed social care legislation requires, not to mention fulfilment of the aspirations of many in social care, and I believe also many in palliative care.