If you haven’t come across these, you might be interested in some end-of-life podcasts from the University of Buffalo School of Social Work. There’s an interview with Jean Kutner, a medical professor from somewhere else, on the development of evidence-based practice in American hospice practice; this is really just an average trawl through why it’s good to get evidence on your practice (which is frankly a bit dull) but towards the end, she’s good on how you facilitate research in your hospice.

The real gems are three talks from one of their own faculty members, Deborah Waldrop, talking about her own research on end-of-life care decision-making. She has a really engaging manner, and is easy to listen to (unlike Dr Kutner). The first one explains ‘what is hospice?’, tells you about American hospice care and has a bit of history, which includes St Christopher’s and Dame Cicely. This is less than 15 minutes, so it packs a lot in, but she makes it really interesting, explaining also doing personally relevant research.

The later episodes are about her research: how did people make decisions on their pathway through hospice services?  Episode two explains some of the issues in doing research with people who are dying. You get the results in the longer (but still less than 15 minutes) episode 3, with some nice quotations from patients and carers about some of their dilemmas in deciding on their pathway through end of life care serviecs.

I expect many of my readers are not used to podcasts. How do you get these? First, you go to the website; click on the link below. It gives you a list of their many podcasts. Click in the search box (top right-hand corner) and type in ‘end of life’. This gets you a list. Choose the one you want and click on ‘download MP3′. You get a rectangle which has a slider on it showing where they are as it plays the podcast. It will start off saying ‘buffering’, while it downloads enough, and the rectangle fills as more of it downloads, usually it keeps ahead of the slider, but if not it will stop for a bit until more arrives at your computer. When it’s ready your media player (probably Windows) will open and start playing it – the rectangle becomes a narrow line at the bottom, but the slider continues its way along as it plays. Each of the podcasts has some music and an intro. Once you’ve heard this, you won’t want it again; you can click and hold your cursor on the slider to move it to the right along the rectangle or line until you get to what you want to hear about; you can also slide it back to hear stuff again. It will carry on to the end (which is always an ad for the Buffalo School of Social Work – look at the website, it’s one of the historic schools in the US), and you can leave it running in the background and do other stuff on your computer while listening to it.

The website: http://www.socialwork.buffalo.edu/podcast/

This post is about the new Condem coalition’s healthcare WhitePaper and what it says about end-of-life care and social care.

Department of Health (2010) Equity and excellence: Liberating the NHS. (Cm 7881) London: TSO.

On the web: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_117794.pdf

You can find consultations and other documents at:

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_117353

There has been a lot of press comment that the Conservatives promised no top-down reorganisation of the NHS and in Andrew Lansley’s White Paper (WP below) on healthcare reform, have done exactly that. Gone are the days when White Papers were white, or at least cream: this one is covered in tasteful tones of mauve. However, the design is the same and the contents are mainly high-level generalisations about policy direction. Here’s a bit of a novelty: an analytical strategy (AS below) has been published alongside it. This means they’re telling you why they’re thinking what they’re thinking; fancy that. In reality, it sets out the things they’re consulting on: there are several consultations on the main philosophies that close in early October.

There’s another tranche of detailed stuff on information management (i.e. cutting the IT budget) and so on to come later.

General

The main aims are stated as:

i. Putting patients and the public first;

ii. Focusing on improvement in quality and healthcare outcomes;

iii. Autonomy, accountability and democratic legitimacy; and

iv. Cutting bureaucracy and increasing efficiency. (AS, p 2)

This is the vision: an NHS that:

Is genuinely centred on patients and carers;

Achieves quality and outcomes that are among the best in the world;

Refuses to tolerate unsafe and substandard care;

Eliminates discrimination and reduces inequalities in care;

Puts clinicians in the driving seat and sets hospitals and providers free to innovate, with stronger incentives to adopt best practice;

Is more transparent, with clearer accountabilities for quality and results;

Gives citizens a greater say in how the NHS is run;

Is less insular and fragmented, and works much better across boundaries, including with local authorities and between hospitals and practices;

Is more efficient and dynamic, with a radically smaller national, regional and local bureaucracy; and

Is put on a more stable and sustainable footing, free from frequent and arbitrary political meddling. (WP, 8-9)

It then goes on to some political meddling, and judging by the three-year programme set out, this will be frequent, although because it’s a programme, perhaps it won’t be arbitrary.

This leads us on the the main points: more patient choice and greater control of their records, GP commissioning (emerging from present experiments) and less bureaucracy, PCTs reduced in size, local authorities responsible for public health: we’ve seen it all in the press. You can’t imagine GPs doing more than sitting on a few advisory boards, so presumably this means that staff in the PCTs will divide themselves up among a larger number of local bodies and try to administer the system. A few central offices and strategic thinkers will be got rid of.

There are three things to say about this. One is, it will be conservative (with a small ‘c’, you notice). This is because people involved in day-to-day stuff will go with the things they know, not with new-fangled nonsense. So the cancer, renal, heart and chest physicians will retreat to not thinking about the reality that their patients are dying from their conditions, but will carry on doing more and more to cure them rather than making sensible judgements about when they’ve come to the end. And of course they will persuade a lot of patients that that’s what they want too. So end-of-life care that thinks: ‘what will give the best quality of life for someone who is dying’ will go out of the picture.

Second, overall planning and strategic thinking will reduce because smaller groups covering smaller areas will have less incentive to look at the big picture, and the local authorities will concentrate on stopping people smoking to get their health premium (there are more ways of political meddling than normal people can conceive of).

And third, most important, it is easier to save money when you have a larger number of spenders because they all try to keep within their budgets, whereas large spenders have more flexibility to vire resources between budgets.

How does it deal with the interests of this blog, palliative, end-of-life and social care? Not surprisingly, given the high level of generality of this mainly policy statement, they are not offering a lot of detail on particular specialities, but there’s some on end-of-life care and some on social care.

End-of-life care

The material on extending choice contains this on end-of-life care:

The Government will…

Introduce choice in care for long-term conditions as part of personalised care planning. In end-of-life care, we will move towards a national choice offer to support people’s preferences about how to have a good death, and we will work with providers, including hospices, to ensure that people have the support they need; (WP, p 17)

So hospices get a mention, naturally because they are the best example in healthcare of independent organisations actually making a large contribution, and this supports the Conservative ‘big society’ agenda. Choice is supposed to be not about just what treatment you get and where, but what that treatment feels like to the patient (and family, I hope, although it’s not too good on family participation because it’s stuck like the medical model on patients).

End-of-life care also comes up under quality improvement, because they are thinking about financial incentives for improving quality:

The government will…

review payment systems to support end-of-life care, including exploring options for per-patient funding; (WP, p25)

So we’re back to this again. Will this mean GPs who choose to do it will get some money? Or does it mean cheapo will win? This foundered the last time on the difficulty of defining what palliative care might mean and it got down to numbers of days, and completely got lost when the Treasury found out they didn’t pay for most of palliative care, so they would have to pay outside bodies to do the job. But note they’re not talking palliative care here, it’s end-of-life care, which will not primarily mean funding high-end palliative care, So if anything at all, it’s a small subvention for hospices or hospital palliative care, but some extra for (mainly private sector) care homes who save the NHS some money.

That’s it on end-of-life care.

Social care

The executive summary includes social care into democratic legitimacy:

To strengthen democratic legitimacy at local level, local authorities will promote the joining up of local NHS services, social care and health improvement. (WP, p 4)

This means giving local authorities the responsibility to promote partnership between health and social care, not the NHS. This realistically assesses the chance of the medically-lef NHS doing anything about social care as nil, so they’re letting the more community-led local authorities have a go. This also includes health improvement: again, realistically bearing in mind the NHS culture, this is turning the NHS into an illness service and putting positive public health with the local authorities. You can see the possibility, if it goes well, of other policy development for health going to the local authorities in the future. They need to grasp the opportunity, at least partly because the main point of the White Paper is GP commissioning. There is, therefore, not going to be a lot of public policy making among the local commissioners. For one thing, they will have a lot of detailed fish to fry. Also, they will be covering areas that are too small and too non-coterminous with anybody else’s areas to have much influence.

Also on this area:

We will strengthen the role of the Care Quality Commission as an effective quality inspectorate across both health and social care. (WP, p 5)

As it’s only just started, and so they have no real evidence that a giant multi-purpose regulator is going to work, you could see this cynically as making sure that the mass of private sector providers that we have and the bigger mass that we’re probably going to get are not going to be properly regulated. However, it’s more likely to be because they are against quangos and they’ve got to have a regulator, so they might as well have a supergirl. My sense is that regulators who really know their professional territory are likely to be much more effective; this one is going to be too amorphous really to have a handle on the huge range of its responsibilities, and because it’s so large it will have so much bureaucracy to keep it on track it will never get anything done. Ask me if I’m right in three years time.

Then, social care gets a mention in the ‘our values’ section on ‘liberating the NHS’, because the Condems have not yet managed to put a stop the Department of Health speak that says social care every time it says health care:

The NHS is about fairness for everyone in our society. It is about this country doing the right thing for those who need help. We are committed to promoting equality and will implement the ban on age discrimination in NHS services and social care to take effect from 2012. The NHS Commissioning Board will have an explicit duty to address inequalities in outcomes from healthcare services. (WP, p 7)

We’re now onto the main document from the exec. summary, by the way. Does this mean that nobody will have a duty to address inequalities in outcomes from social care services? I’m looking forward with interest when I retire (it may be longer than I think, judging by some of the decisions being made about retirement age) to mounting a court case or two on how equal the outcomes of local authority care are.

Another section is on ‘Improving the NHS and reforming social care’ – I wonder whether it’s worse to be improved or reformed? This section is about the Department of Health delegating to local authorities (localisation in action here) responsibility for public health, including the spending of a ‘premium’ (i.e. extra cash) to improve public health and reduce health inequalities. The question is, do you get your extra if you’ve been good and improved it, or if you’ve failed and you’ve still got a sickly population with lots of fat smokers? Remember this is about incentives. I think we should be told.

However, the Department is not giving up on social care (ostensibly a local authority responsibility so if it were really going for localisation, here is a good thing to delegate):

The Department will continue to have a vital role in setting adult social care policy. We want a sustainable adult social care system that gives people support and freedom to lead the life they choose, with dignity. We recognise the critical interdependence between the NHS and the adult social care system in securing better outcomes for people, including carers. We will seek to break down barriers between health and social care funding to encourage preventative action. Later this year we will set out our vision for adult social care, to enable people to have greater control over their care and support so they can enjoy maximum independence and responsibility for their own lives. The Department will continue to work closely with the Department for Education on services for children, to ensure that the changes in this White Paper and the subsequent public health White Paper support local health, education and social care services to work together for children and families. (WP, p 10)

It’s not clear but what this seems to be about is getting families to take responsibility for preventing problems in their own child and elder care. The question is just the same as it is with the health premium. Are you going to pay more for those who don’t because they have more problems or those who do, because they need an incentive for not having problems?

It covers their proposed commission on long-term care (every new government has to have one so that we can all be reminded how difficult it is and why they can’t do anything about it fro another Parliamnet because they won’t spend the money – perhaps you remember my prophecy that nothing will be done until the early 2020s, because that’s when the care home figures will start to bite):

The Department will establish a commission on the funding of long-term care and support, to report within a year. We understand the urgency of reforming the system of funding social care. The Commission will consider a range of ideas, including both a voluntary insurance scheme and a partnership scheme. As a key component of a lasting settlement for the social care system, we will reform and consolidate the law underpinning adult social care, working with the Law Commission. (WP 10)

Good to see the mention of the Law Commission report on adult social care law – an eminently sensible document covered before in this blog. This is easy to say of course because Law Commission reforms are supposed to be politically neutral, so it never says anything to upset anyone. But it does need to be done, and at least someone in the Department of Health has noticed and slipped it in. Finally:

The Government will bring together the conclusions of the Law Commission and the Commission on funding of long-term care, along with our vision, into a White Paper in 2011, with a view to introducing legislation in the second session of this Parliament to establish a sustainable legal and financial framework for adult social care. (WP, p 10)

Wait and see, then; by which time of course, bearing in mind the difficulties of keeping a coalition government in line, it might all have turned out to be too difficult again.

Moving on:

Here’s another quango system in the making then: Monitor (the people who check on the finances of foundation trusts) will look at financial information, HASCIC will check on the outcomes data and CQC will check on the quality of anything they manage to organise to get to see, when they’ve written their huge volumes of criteria.

We will ensure the right data is collected by the Health and Social Care Information Centre to enable people to exercise choice. We will seek to centralise all data returns in the Information Centre, which will have lead responsibility for data collection and assuring the data quality of those returns, working with other interested parties such as Monitor and the Care Quality Commission. We will also review data collections with a view to reducing burdens, as outlined in chapter 5. The forthcoming Health Bill will contain provisions to put the Information Centre on a firmer statutory footing, with clearer powers across organisations in the health and care system. (WP, p 15)

Social care turns up again in an unexpected place:

The government will…

Develop a coherent 24/7 urgent care service in every area of England that makes sense to patients when they have to make choices about their care. This will incorporate GP out-of-hours services and provide urgent medical care for people registered with a GP elsewhere. We will make care more accessible by introducing, informed by evaluation, a single telephone number for every kind of urgent and social care and by using technology to help people communicate with their clinicians. (WP, p18)

So social care emergencies will come through the health system. What does this mean for concerns that have elements of social care?  Before you say ‘jolly good thing’ to integrate the two, think about ‘Oh God not a palliative’ an article in this month’s Palliative Medicine (Vol 24(5): 501-9). This shows that emergency doctors do not like being presented with nasty things that involve spending time talking to people, instead of giving them pills and being off to the next thing (what one of the respondents called ‘proper doc’ work and then realised he shouldn’t have said it – even if he meant it). Their call centres pressurise them to get on to the next thing quickly. Moreover the study shows that patients do not trust or value the work of emergency doctors and that most out-of-hours doctors are motivated only by the good money. We do not want social care decision being made in organisations like this. Neither do we want anything that sounds as though it might cause problems to a ‘proper doc’ (i.e. human relationships) fobbed off onto the social care aspect of the service, when it really needs a doctor with the skills and motivation to do a good piece of interpersonal medical work.

A significant aspect of the patient-centred approach of the White Paper is picking up the social care practice of personalisation:

The previous Government recently started a programme of personal health budget pilots. International evidence, and evidence from social care, shows that these have much potential to help improve outcomes, transform NHS culture by putting patients in control, and enable integration across health and social care. As part of personalised care planning, the Department will encourage further pilots to come forward and explore the potential for introducing a right to a personal health budget in discrete areas such as NHS continuing care. We also recognise that introducing personal budgets is operationally complex and the Government will use the results of the evaluation in 2012 to inform a wider, more general roll-out. (WP, p 18)

Note the extreme caution about the possibility of a right to a personal health budget and only in discrete areas (i.e. nothing that’s going to cost us) and the particular mention of continuing care. That is, we’ll give you the money, you can add what you like so we’ll try not to give you too much, now go away and ‘take patient responsibility’.

Another new quango will be HealthWatch England with its local offshoots: community health councils are back again, to comment on the new commissioning arrangements:

Local HealthWatch organisations will ensure that the views and feedback from patients and carers are an integral part of local commissioning across health and social care; (WP p 20)

HealthWatch England will provide advice to the Health and Social Care Information Centre on the information which would be of most use to patients to facilitate their choices about their care. (WP. P 20)

Note the integration of social care into local commissioning arrangements (and so therefore dominated by the interest of GPs, instead of the broad social resilience role of local authorities?) and information about patients and their care, not broader social issues. A recipe for the medicalisation of social care, whose objectives are not to help GPs when they can’t or don’t want to cope with longterm care needs, but to promote social solidarity.

Another healthnsocialcare omnibus:

The current performance regime will be replaced with separate frameworks for outcomes that set direction for the NHS, for public health and social care, which provide for clear and unambiguous accountability, and enable better joint working. The Secretary of State, through the Public Health Service, will set local authorities national objectives for improving population health outcomes. It will be for local authorities to determine how best to secure those objectives, including by commissioning services from providers of NHS care. (WP, p 22)

So are the outcomes for social care an element of public health? Social care disappears from the rest of this paragraph. It should have its own performance criteria and they should not be commanded by health needs, either public health objectives (which are mainly about smoking and obesity) of NHS needs (which are mainly about medical and nursing treatment).

It is essential for patient outcomes that health and social care services are better integrated at all levels of the system. We will be consulting widely on options to ensure health and social care works seamlessly together to enable this. (WP, p 23)

Yes, well after 50 years of trying to do this, I’m sure we’ll believe everything they suggest. Of course, they’re politicians who have to believe that their policies change the world.

The next attempt to change the world is to set policy standards:

Each standard is a set of 5-10 specific, concise quality statements and associated measures. These measures act as markers of high quality, cost-effective patient care. They are about excellence, derived from the best available evidence and are produced collaboratively with the NHS and social care professionals, along with their partners, service users and carers. The standards will be developed in a way that makes sense for patients, and they will extend beyond NHS care, informing the work of local authorities and the Public Health Service. They will include information for clinicians and patients on relevant and ongoing research studies that are key to improving evidence for better outcomes. (WP, p 23)

With the increasing importance of coherent joint arrangements between health and social care, the standards will cover areas that span health and social care. We will expand the role of NICE to develop quality standards for social care. The Health Bill will put NICE on a firmer statutory footing, securing its independence and core functions and extending its remit to social care. (WP, p23)

There has been comment in the social work press about what this means for the Social Care Institute for Excellence (SCIE), and the stupid comment made by the minister apparently was that it was a charity so they couldn’t give it statutory responsibilities (tell that to the NSPCC). Actually, it was set up with similar intentions, hence the similar name, but social care knowledge is not in  the same place as healthcare knowledge, mainly due to successive governments not bothering to spend much money on social care research. This might begin to change as recent developments in research have influence over the next 20 years. However, SCIE (and its Scottish equivalent IRISS) has done a good job at collecting and making available knowledge resources and this ought to be continued.

I also think that there is a lot to be said for the extension to NICE responsibilities, because they have developed a very good decision-making model. What I would want to be sure, however, is that social care decision-making is not dominated by doctors, who know nothing about it and mostly couldn’t care less, and is prepared to look at some of the softer areas of knowledge where robust collection of information and knowledge could be very beneficial. One is not given much hope by the inane example of a NICE standard quoted in the White Paper, but the record of NICE is reasonable in this regard.

Then an attempt to produce more incentivisation in the payment by results system leads us to this:

The Department will…

implement in 2011/12 further incentives to reduce avoidable readmissions and encourage more joined-up working between hospitals and social care for services following discharge; (WP p 25)

Yes, but what about some joined up working in making the decisions about service-planning during periods in hospital and about discharge. If you had an adequate social work provision in hospitals and really engaged it in people’s care, you’d get a lot further than leaving it to hospitals to decide when to throw people out, with never a concern for integrating health and social care throughout. Remember, most of the medical care is done by GPs and community health services, not hospitals, and the hospitals should not be taking the lead in decisions about the use of community health services for their organisational and financial benefit (particularly when they are encouraged to be independent profit-making stand-alone bodies that can decide to do what they like for financial rather than total care system reasons).

Now on to the responsibilities of GP consortia:

GP consortia will have a duty to promote equalities and to work in partnership with local authorities, for instance in relation to health and adult social care, early years services, public health, safeguarding, and the wellbeing of local populations. (WP, p 29)

Well that’ll be a new one, GPs having a duty to work in partnership on safeguarding; who is the most common absentee (they’re so busy, poor dears, unlike anyone else of course) from case conferences and strategy meetings? But of course only the consortia have the duty, so they can approve the policy and still not bother to take part.

Now the responsibilities of our national leaders on the National Commissioning Board:

setting commissioning guidelines on the basis of clinically approved quality standards developed with the advice of NICE in a way that promotes joint working across health, public health and social care; (WP, p 31)

and the NHS role of the Secretary of State:

The legislative and policy framework. Responsibility for Department of State functions will remain with the Secretary of State. This includes determining the comprehensive service which the NHS provides, and developing and publishing national service strategies which will enable the roles of NHS, public health services and social care services to be better coordinated. (WP, p 33)

Accounting annually to Parliament for the overall performance of the NHS, public health and social care systems. (WP, p 34)

Finally, on democratic legitimacy:

The Government will strengthen the local democratic legitimacy of the NHS. Building on the power of the local authority to promote local wellbeing, we will establish new statutory arrangements within local authorities – which will be established as “health and wellbeing boards” or within existing strategic partnerships – to take on the function of joining up the commissioning of local NHS services, social care and health improvement. These health and wellbeing boards allow local authorities to take a strategic approach and promote integration across health and adult social care, children’s services, including safeguarding, and the wider local authority agenda. (WP, p 34)

These arrangements will give local authorities influence over NHS commissioning, and corresponding influence for NHS commissioners in relation to public health and social care. While NHS commissioning will be the sole preserve of the NHS Commissioning Board and GP consortia, our aim is to ensure coherent and coordinated local commissioning strategies across all three services, for example in relation to mental health or elderly care. The Secretary of State will seek to ensure strategic coordination nationally; the local authority’s new functions will enable strategic coordination locally. It will not involve day-to-day interventions in NHS services. The Government will consult fully on the details of the new arrangements. (WP p 35)

Then on local authorities’ responsibilities:

Each local authority will take on the function of joining up the commissioning of local NHS services, social care and health improvement.

Local authorities will therefore be responsible for:

- Promoting integration and partnership working between the NHS, social care, public health and other local services and strategies;

- Leading joint strategic needs assessments, and promoting collaboration on local commissioning plans, including by supporting joint commissioning arrangements where each party so wishes (WP, p 35)

This set of arrangements does provide a useful possibility of local democratic involvement with an understanding of and involvement in social care in healthcare; in the long-term, will the hospitals become independent and all community health be back with the local authorities? It’s a possible model if things go in that direction, and it’s what a lot of Europe does; why not us too? Britain is too centralised. But it’s against the trend of British politics and government over the past sixty years. It might be the end of separation between community health and local government, which go logically together. And that might mean a more rational engagement between community health and social care. But only if you stop the hospitals seeing it as their right to dominate the use of resources in favour of acute treatment, and to evade responsibility for long-term conditions and care.

On to regulation. The intresting feature here is using Monitor, the foundation trusts regulator, as an economic regulator for the proposed market and choice system:

As now, the Care Quality Commission will act as quality inspectorate across health and social care for both publicly and privately funded care. In addition, we will develop Monitor, the current independent regulator of foundation trusts, into an economic regulator from April 2012, with responsibility for all providers of NHS care from April 2013. Providers will have a joint licence overseen by both Monitor and CQC, to maintain essential levels of safety and quality and ensure continuity of essential services. (WP, p 37)

Monitor will be turned into the economic regulator for the health and social care sectors, with three key functions: (WP, p 38)

Monitor’s powers to regulate prices and license providers will only cover publicly-funded health services. However, its powers to apply competition law will extend to both publicly and privately funded healthcare, and to social care. (WP, p 39)

Here, we can see that private sector social care (mainly care homes at the moment) will also be regulated by Monitor. If the plan to increase engagement by NHS organisation in social enterprise, so that your local hospital might be a John Lewis Partnership of its staff, can social care organisations or groups of social workers be far behind? Mainly, they are talking here about fairly large organisations, but there is some mention of local community organisations becoming social enterprises. These will need economic regulation, too. You could not have the local safeguarding body disappearing because it got its finances wrong. And to round it all off nicely:

We are moving to a system of control based on quality and economic regulation, commissioning and payments by results, rather than national and regional management. Within that context, we are committed to reducing the overall burdens of regulation across the health and social care sectors. We will therefore undertake a wide-ranging review of all health and social care regulation, with a view to making significant reductions. (WP, p 44)

They’ve started this in their bonfire of the social care quangos. More on that in a later post, because I think it’s not so easy.

Local authorities’ new functions will help unlock efficiencies across the NHS, social care and public health through stronger joint working. (WP, p 45)

I’ve suggested that I think this is possible and hope it will happen. Legislation will include:

Placing the Health and Social Care Information Centre, currently a Special Health Authority, on a firmer statutory footing, with powers over other organisations in relation to information collection; (WP, p 49)

Making the National Institute for Health and Clinical Excellence a non-departmental public body, to define its role and functions, reform its processes, secure its independence, and extend its remit to social care; (WP, p 49)

Giving local authorities new functions to increase the local democratic legitimacy in relation to the local strategies for NHS commissioning, and support integration and partnership working across social care, the NHS and public health; (WP, p 49)

Establishing HealthWatch as a statutory part of the Care Quality Commission to champion services users and carers across health and social care, and turning Local Involvement Networks into local HealthWatch; (WP, p 49-50).

In summary then

It’s quite hard to see how palliative care and, separately, end-of-life care will come out of this. GP consortia may want to do more themselves. Will they want to pay for it in hospitals? Some of my colleagues in hospitals think not. Will they want to commission more from hospices because they are cheaper than hospitals and cause less work for the GPs? Perhaps, but will they think hospice in-patient units are too expensive and only pay for home care or will they think that district nurses could do it all? I think hospices had better start finding ways to prove what their CNSs offer that a well-trained district nurse doesn’t.

For social care, we can all support the aim to get greater engagement in healthcare, provided you don’t let the financial needs of hospitals to throw their patients out when it suits them dominate how you run community services in both health and social care. And provided you incorporate social care objectives aiming at social resilience and solidarity into health care objectives: that way really lies the ‘big society’.

This is the promised comment on the social care framework for end-of-life care. And this is the disclaimer: I was a member of the Advisory Group that led to this document. I don’t blog about these things as they’re going on, because I think it’s only fair to wait until the whole thing’s been produced by the people who are responsible for it. But obviously I am committed to the thing having a life as part of end-of-life care debate, so I’m not an outsider on this one.

The whole thing is a bit confusing and a print designer has tried to put in lots of cheery and involving boxes with things service users and others have said (they haven’t asked any, these are garnered from various sources). Different boxes (also variously garnered) contain inspiring little case studies about what various organisations have done that might give you ideas for what to do. Some of these from the palliative care world frankly do not demonstrate a lot of gumption in thinking about social care and social work, although there’s no harm in what they’re saying. You have to extrapolate a lot.

You will gather then that the whole thing shows that nobody is doing very much about social care and social work in palliative care. Presumably that’s why we’ve got two social care leads – one of them an eminent social work academic on death (Margaret Holloway) and one of them an adult social care manager (Tes Smith), so they’ve got a good combo. But you can only think it’s nearly all to be done. Still, merely doing this is a big move on from the almost total absence of social care and social work in the end-of-life care strategy itself.

So what does it say? First, there’s a one page of 8 ‘key messages’. This basically says social work and social care ought to be an important aspect of end-of-life and palliative care, but we’re struggling to achieve that, so here’s a go at working out what to do.

Then there are a set of 10 objectives; what it’s telling us we should be aiming to do. These emerge from 7 sections; these are basically the areas we should be looking at. Most of these (not number 7, they ran out of ideas by then presumably) have recommended actions. There are many recommendations (I haven’t counted) and they’re the detail of what we might do: all the ideas someone on the working party had, presumably. Some of the objectives and recommendations are, how shall I put this, early in their journey from the jargon of best intentions to well-clothed overalls of practicality. How’s that for a mixed metaphor?

Reading through all of this, I’m struck by the number of agendas people have: I like to point out current obsessions, so I searched for agendas in the document. Here you go: transformation, personalisation, re-ablement, change, safeguarding, social support, human rights, Dignity Challenge (with capital letters – it must be important), social care, Extra Care housing (Extra Care capitalised but not housing), wider social care. I liked how one agenda had key thrusts; I always like a few key thrusts in my agendas.

The point of this is the main point of section 1: there’s lots going on in policy development in all sorts of areas relevant to end-of-life care and social care and although you can see connections, some group or other in the DH is ploughing on with all of these separately. You have to remember that it’s people we’re dealing with here and several of the agendas apply to each dying person’s life. Probably, they’re not coordinated in how they deal with individuals. When I’m dying, I’ll probably be lying in bed watching for each agenda to come up. ‘Now then, young man, you haven’t picked up on the transformation agenda yet I see.’ I plan to enjoy being a difficult client in my old age. ‘What’s the difference?’ my wife would say.

You almost feel sorry for the person who had to write section 2: it aims, no less, at a vision for integrated social and health care at the end-of-life; possibly a bit too ambitious, since it’s never been achieved anywhere else, but why not go fro broke? The agenda (yes!!!) was set by the Audit Commission, which pointed out that you need social care on board if you’re going to make much impact on making sure people die in their preferred place of care, that there were a lot of unnecessary and undesired changes in care arrangements for people, that people in social care had a poor training (when I first typed that it it said  ‘poo training’ which accurately describes the availability of most social care training) and skills base for dealing with end-of-life care (and more generally). Finally, says the Audit Commission, there was poor coordination between health and social care. All the usual management things to deal with this are listed starting with ‘strategic commissioning’ bleep bleep (that’s the meaningless jargon alarm again). We’re going to have to stop talking about strategic commissioning, because under the new Condem government, GPs are going to decide where their patients go and hospital trusts are going to decide what they’re going to do and sod the rest. But no doubt there’ll be some new meaningless jargon to describe this; I’ll look forward to it.

The case study is about joint working in Essex. One outcome was that preferred place of care form completion by social care staff grew from 0 to 4% in one year. Well at that rate, only another quarter century to go then. But perhaps it doesn’t matter: is ppc form completion what it’s all about anyway? Is there any sign that ppc form completion actually leads to people getting to be cared for in their preferred place of care? They had a ‘groundbreaking’ conference though so that’s all right. (‘Groundbreaking’ is the new politically correct term for seminal in case you didn’t know; apparently seminal is too gender-specific since only men have it – unless they donate it.)

Most of the recommendations here are the national end-of-life care programme engaging with others. Hope they can make it groundbreaking enough.

Here we are in section three: this is telling us about strategic commissioning, although I’m no better informed about what it means. The objectives are person-centred integrated care, together with ‘embedding’ end-of-life care in commissioning and inspection frameworks and standards for practice. So we’ve all got to get in bed with some new documents. Finally, strengthen palliative care social work as potential advisors and consultants in incorporating social work into end-of-life care. Unfortunately, the new government plans to get rid of consultants who are making far too much money, second only to bankers, so obviously the palliative care social workers won’t be getting any pay for this. No change there then.

A lot of this is about creating more flexible budgets and better information; the example is an email communication service which isn’t working but is expected to do wonderful things when a lot of relevant organisations ‘gradually join’. The fact that they have to use an example like this shows only too clearly that there is virtually nothing out there to promote this kind of flexible working together. Another example tells us that when a medical assessment that death is predicted (presumably they mean soon, we can all predict we’re going to die) and care at home is requested, a single call will ‘activate’ immediate care. I do not believe with the present structure of continuing and community care funding and service commissioning that this is possible in most areas now, and I’d be interested to know how the government’s new commissioning arrangements will make it more possible.

Section four is about care and support planning and the main message is that you will have to involve social care in all of them if they are to work well, so assessments need to connect up with social care assessment and social care staff need training in end-of-life care to be able to participate in integrated working. Residents in care homes should have their end-of-life care needs reviewed regularly and have this included in their care plans. Discharge problems should be sorted out. This is the basic stuff that really needs to be worked on to make a difference to many people. If the ambitions here can be achieved, we can hope for slow and steady improvements on the ground.

Section five has a lot on education and supporting the social care workforce to see it as their business to be involved in end-of-life care, and to realise that they already have lots of relevant skills in doing this part of the job. This will be a big task in the face of other priorities, but they’re certainly right.

Section 6 wants to encourage better skills and capacity in the community to respond to end-of-life issues,

All of this is worthy, and it raises the flag for the importance of social care to end-of-life care and end-of-life care in social care; it needs to be said; loudly. I suspect that other agendas (yes!!!) will leach away the motivation and finance to do this stuff, but it’s a long-term programme so some steps along the way may lead to more than we can see so far. This is an ambitious expedition starting from a desert landscape.  Let’s hope the welly (maintain the metaphor, Malcolm, desert boot) is there to move it on to the land of lactose and liquid sugar.

To see the document, here’s the link again: http://www.endoflifecareforadults.nhs.uk/assets/downloads/Social_care_framework_again.pdf

I thought you might like  to know about the new Social Care Framework document that is now published by the National End-of-Life Care Programme, this is not part of DH so it’s not archived.

You can see the document at: http://www.endoflifecareforadults.nhs.uk/news/all/neolcp-publishes-social-care-framework

Comment later

Understandably, the media comment on on the Condem re-write of the NHS Operating Statement (the government’s instructions to the NHS about what to do) has focused on the removal of the waiting times requirements – your GP no longer gets a kick if (s)he makes you wait longer than 48 hours for an appointment and your A&E can keep you on a trolley longer than 4 hours (but they’re told the removal of the target does not mean that they should not try harder; I’ll wait to see, but I think these targets have been useful).

However, there is stuff on better cooperation between health and social care, particularly on re-ablement (that is, getting everybody back to work and not claiming government social security payments) and a commissioning document.on end of life care is still expected later this year; so that is where we should look for the improvements they’ll be going for, and the incentives that they’ll be offering to Pcts and others to do their bidding.

The operating statement:http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_116860.pdf

I was full of excitement last week with the Queen’s birthday honours. Those revealing pictures of Catherine Zeta Jones, said by The Guardian to be ‘leading’ the honours, left me all a-flutter.

Down the list, we find that Barbara Monroe, the CEO of St Christopher’s, also got one (and a zizzier one than CZJ – Barbara’s now a Dame). The photos just do not offer quite the same thrill, though. But never mind; soon, presumably, we’re going to get new pics in the hat for the Palace ceremony. Or will it be a fascinator? We’re all agog to know and I shall reveal it as soon as a photo is extant.

In the meantime, congrats Dame Barbara; that’s recognition for the recent renewal of St C’s under her leadership, for child bereavement services where she has played a big role, and end-of-life care in general. And for social work – we can claim one of our own.

A research report prepared by the prestigious group at King’s College London gives guidance (introduced by Desmond Tutu no less) on spiritual care for black and minority ethnic communities; it particularly focuses on sub-Saharan Africa (that means the countries south of the Sahara – basically the non-Arab parts of Africa) , but is widely applicable and adaptable for the UK situation.

There is a very useful chapter on spiritual care assessment.

Also nice is the recognition in several places that social workers have the skills to respond to spiritual care needs. Margaret Holloway’s fellow traveller model of thinking about spiritual care is highlighted (Margaret is Professor of Social Work at Hull University, and is a Department of Health lead on social work in end-of-life care). this is about practitioners travelling with patients and their families on their spiritual journey at the end of life.

This is (as adapted by the KCL team and shortened by me):

1. Joining (requiring spiritual awareness): Every team member should be …sufficiently spiritually aware to recognise the spirituality of the service user and to identify those people for whom spiritual concerns are important.

2. Listening (requiring spiritual sensitivity): …All team members should be able to ‘hear’ what the service user is saying and pick up the clues as to what they mean as well as what they are not saying (level 1)…[more skilled team members should be able to make] a preliminary assessment of the nature and significance of the spiritual issues is made through ‘active listening’.

3. Understanding (requiring spiritual empathy): …the staff member providing spiritual care needs to be able to understand and convey empathy with the kind of spiritual issues and dilemmas that may concern the service user, as well as the high points of spiritual experience, and understand how spiritual resources might be utilised…[the assumption is that you have to be pretty spiritually aware of your own journey to do this]

4. Interpreting (requiring spiritual exploration): …the traveller [patient] may enter a dark valley or rocky or hazardous terrain in which s/he is reliant on the knowledge, experience and expertise of the guide. The spiritual care provider will be willing to make her/ himself vulnerable through choosing to travel with the other person…This kind of depth work needs to be conducted with great care; often (but not always) a professional spiritual care provider will be the most appropriate person to engage with service users at this level.

One would like to see a similarly flexible approach to social work skills in palliative care, rather than the crude adherence to psychological care chracarteristic of NICE guidance.

The report on the web: http://www.kcl.ac.uk/content/1/c6/07/39/29/Spiritualcarerecommendations-Fullreport.pdf

People engaged in palliative care will have been poring through the new Continuing Care Guidance, which has been out for a month or so. However, there is an important new wrinkle: the implications of the new Checklist process.

The Guidance on the web at: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_115477.pdf

This is the latest re-write, after the fairly extensive review about 18 months ago. It is not changed in principle (how could it? the law hasn’t changed) but the present document counts as a substantial further bureaucratisation of the process, which I shall comment on again as I come to write the guidance for staff at St Christopher’s.

However, first off the stocks (due to its increasing impact) is the further pumping up of the checklist. At one time this used to be seen as a nice little extra to help staff who didn’t come across continuing care all that often decide whether they should go the whole hog of the intensely time-consuming Decision Support Tool (DST). However, it has become a procedure all its own, with a full Chapter in the new Guidance. And you have to make sure you’ve got informed consent and give notice that you’re going to do it so that patients and their families are not assessed unawares. Which rather defeats the original purpose of a quick and dirty guideline for staff. It is in this way that things become bureaucratised.

If you wondered why this is, it is because there have been difficulties when PCTs have decided not to go ahead with doing a DST. If there is no checklist, they can be criticised for not having considered that decision carefully enough, or for being obstructive (perish the…). So they have started to use the checklist as proof that  they have been through the circumstances properly.

What this means, of course, is that another stage has been inserted into what is already a bureaucratic nightmare. So you have to have a Checklist done (it has acquired a capital C – and rightly so now it’s a fully-fledged bureaucratic nightmare in its own right). Then they can decide whether to get a DST done. And if you don’t have a DST done, you can prove that you were right not to have a DST done, so loads of people who have a slim chance of continuing care are going to have checklists done on them so that the PCT can prove if anyone ever asks that they reasonably decided not to do a DST. This reflects the fact that a DST is so time-consuming that no sane health or social care staff would do one unless they couldn’t avoid it; it is no doubt true that as a result some people were slipping through the net.

This is a very real problem where you have patients who are receiving social services community care, which they have to pay for. Once set up, this tends to go on, even across hospital or hospice admissions (Discharge coordinator: ‘Oh blessed relief they’ve got a package, we can send them home again hassle-free’). And the people who review it are from adult social care departments, who are not usually centrally involved in continuing care, and don’t do assessing health needs, so don’t think in detail about whether someone has got to the point of being entitled to continuing care (to get which you have to have a ‘primary health need’).

The problem is, though, that someone who has been getting a range of services for some time and whose health needs rise (as health needs tend to do as you get towards the end of life) may well be paying for a package that they should now be getting free from the NHS. Hence the Guidance emphasises fairly strongly that adult social care staff and anyone else (step forward, hospice home care CNSs) should include a checklist in any reviews that they do. Otherwise, people may be paying for what they should have free.

This seems likely to lead to a whole lot more Checklists (with informed consent and notice) being done. The benefit may be a rising awareness among patients and their families that they can argue about whether they have got to the point of eligibility for continuing care when things seem to them to be getting worse. This is good for their knowledge about and rights to free care, but not so good if it means they have to submit to more checklists.

First, two of the parties in government in particular nations of the UK.

Of those I have not previously looked at, the DUP (the Democratic Unionists in Northern Ireland) have a quite detailed manifesto compared with many others. It wins out on palliative care, among all the manifestos I have seen:

The World Health Organisation recognizes that palliative care incorporates physical, psychological and spiritual needs and it is important that all elements are properly resourced.Three quarters of people indicate that they would prefer to die at home, and this must be respected as services are commissioned.Those in receipt of such care should be informed about benefits available to them and given sound advice around finance and other personal matters as they plan for the end of their life. (p 45)

Can’t say fairer or more thoughtful than that. Then, their final objective on health:

• greater delivery of end of life care in primary and community settings rather   than secondary care (p 32)

Then, mentions of social care:

Opportunities should be freed up for charities and other providers with a proven track record to deliver services.The third sector has much to offer
in social care provision in areas such as mental health,dementia,learning
disability and acquired brain injury. (p 29)

The recommendations of the Bamford Review of Mental Health should be implemented. Approximately 24,000 people currently suffer dementia in Northern Ireland, and this figure is expected to climb to 50,000 by 2051. Health and social care costs for dementia of £200 million will double within twenty years.We need to be well-equipped to treat and support these individuals. A comprehensive dementia strategy for Northern Ireland is required. (p 45)

As well as these specific points, they are good examples of the way the health agenda is markedly preventive and community oriented; it rather nicely recommends asking NICE to identify existing practice that is non-cost-effective, as well as new things that are. There’s a fairly positive section on valuing older people. There’s also a lot on poverty and inequality -  of course they’re sticking up for the protestants against the catholics.

The Scottish National Party has a smallish manifesto; however its summary puts older people right up there at the front:  a fair deal for pensioners with pensions rising in line with earnings and a guarantee to protect free personal care and concessionary travel (Page 4 after the photos). A lot of the manifesto is about being champions for the interests of Scots people; for example:

we believe Scots must not lose out as a result of policy decisions for england. That means there should be no new taxes or contributions, or changes to attendance allowance or Carer’s allowance that will impact on Scots, to pay for reform of care for the elderly down south.

Referring to Sinn Fein, the other power-sharer in Northern Ireland, there still seems to be no manifesto, but there are campaign statements:

Website for these: http://www.sinnfein.ie/election-campaign-statements

I’d like to comment on the Respect Party manifesto, but my browser will not download it. However, the website does not reveal much interest in health and social care, or older people; it mainly focuses on anti-racism and equality issues, particularly around housing, education and work; a party for the working man, I decided.

The website: http://www.therespectparty.net/breakingnews.php?id=864

The British National Party has now published its manifesto; searches for palliative, end of life and social care drew a blank. However, it does mention ’social work’; apparently the police are doing too much of this, politically correctly, and it’s got to stop.

Looking more broadly at the manifesto, NHS funding would be increased if there (in your dreams) were a BNP government by removing the foreign aid budget, and old age pension and public sector pensions would be sorted out. Housing and other public services would be relieved by not having to provide services to any immigrants, and human rights and equality legislation and organisations would be removed. Serious criminals will be similarly removed to South Georgia (the little British colony miles from anywhere in the Atlantic) and the death penalty would be applied to lots of nasty people, especially rapists.

They are also into compulsory volunteering: ‘a Community Award Scheme for our young people which will take the form of a compulsory one year period for all school leavers during which they will work in the community as the final element of their education. This scheme will allow young people to choose between a variety of community service options which might include, for example, caring for the elderly or disabled people, environmental or heritage restoration projects or military training. The final choice of direction in this regard will be dictated by the school leaver’s scholastic record, preferences and suitability. These courses would be character building and would instil discipline, social and community values and work ethics in all young people.’

That’s going to be popular with the gap year middle classes. Yes, when I’m elderly, I want to be cared for by some lout forced to look after me. Volunteering should mean what it says; you should want to do it.

You would laugh at all this, or weep about the attitude to other human beings. But these views are the attitudes of many pub bores across the country. You can imagine them poking you in the chest to emphasise their points, as they down yet another pint. How is it that we are educating people in social and personal understanding so badly that this sort of approach to the world still exists?

Website: http://bnp.org.uk/pdf_files/BNP-Manifesto-2010-online.pdf

I’ve been giving loadsa lectures this last couple of weeks, mostly about multi-inter-professional-disciplinary practice, partnership working and so on.

Strikingly, the lecturer on a course for health service administrators commented that my suggestion that partnership working is a response to command and control managerialism of the 1990s was new to her. Do you remember the time when managers were supposed to manage, and generalist managers could develop more effective services than professionals because they were not caught up in personal commitments to a particular professional approach to services? Partnership working reflects a realisation that that command and control does not create the effective interpersonal relationships within a service and it is solid interpersonal interprofessional relationships that actually makes it work for patients and service users.

Command and control didn’t work, of course, because managers who take their aims from financial and political objectives haven’t really thought through and understood the various aspects of what patients and service users actually need and want: their aims are purely managerial instead of service-oriented. And of course, they can only do what the bosses and the politicians tell them, rather than contributing their judgement and experience.

Professional judgement and experience also contributes to a participation policy based on individual and public choice. The public choice agenda says that if you respond to the individual choices of patients and service users, you accumulate their choices into a service that really responds to their needs.

No: you have a service that does what they want. But professional experience and judgement contributes a commitment to looking wider than what people want and an understanding of what happens as they approach these new issues in their lives and therefore what it is best to do about that to help them. Best for them, but not necesssarily what they want.

In end-of-life care, many of the people we work with have not approached their own deaths before; they do not have a lot of experience of other people’s deaths either. What they think they want beforehand is often wrong for them as they come to the point. Purely personal choice, or purely political sentiment (I say sentiment rather than policy, because I think the political reaction to end-of-life care is often sentimental rather than thought through), is not a good guide to providing the service. But a flexible professional commitment, based on secure professional knowledge and understanding and a strong research base is a necessary part of a good service.

And professional understanding from a variety of points of view also helps. The knowledge management approach to teamwork says ‘forget about having group love-ins as team development. Instead, cultivate appreciation of different knowledges that contribute to your field’. Appreciating and understanding a range of professional knowledges is the strongest basis of good partnership working.