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

In the absence of much about anything on the Department of Health website (only bits of which are re-appreaing from the archive as someone vets them as suitable for the new ConDem regime – why are they doing this for basic professional and legal guidance, one asks?), I’ve been enjoying one of the documents that is still going on, the consultation about making sure health care workers cooperate with each other; this seems to be mainly about safeguarding, which since vetting and barring seems to be in question, other forms of cooperation might be too. In this document, is a paragraph on social work:

2.8 We have been made aware that in mental health and learning disability health care settings, multi-disciplinary teams may include social workers, who are employed by local authorities and seconded to NHS trusts. We believe that
social workers in these multi-disciplinary teams sometimes provide care which could fall within the above definition of ‘health care’. In such cases, it is our view that these groups of social workers who are connected to the provision of health care will be “health care workers” under these regulations (as they will provide services to a designated body for purposes connected with the provision of health care) and that designated bodies will be subject to the duties of co-operation in respect of them. However, we do not consider that social workers generally will be “health care workers”.

It goes on to ask if social workers provide health care and if so where, sort of implying ‘don’t make it difficult for us’. Well, I am second to nobody in being absolutely clear that social work is not healthcare, but I’ve never seen any sign of understanding about this from the DH before, so I suppose you could see this as progress.

BUT…

You mean they had to be ‘made aware’ up there in the Department of Health that there were some social workers employed by NHS bodies working on mental health and learning disability (and palliative care). Is there really any point in a separate duty to cooperate (since most of it’s about safeguarding anyway) that does not fit across the Board. Have they got their minds in gear about the real world up there in the DH? I’m aware, of course, that there are legal implications of how you define health care workers, and that inevitably will involve a lot of waffle, but the whole Act on which this is based is a health and social care act.

The question to ask is not among those that this consultation is asking, but whether there is any point to this jargon-filled gargleflim at all.

You can decide for yourself at: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_113577.pdf

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

As expected Andrew Lansley (Conservative has become the Secretary of State for Health; he is pictured on the DH wensite being introduced to staff, but…

Click this link: is he looking to the future, or just looking for the NHS: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_116035.jpg

Here’s the link to the other health ministers: http://www.dh.gov.uk/en/Aboutus/MinistersandDepartmentLeaders/Ministers/index.htm

• Minister of State – Paul Burstow MP
• Minister of State – Simon Burns MP
• Parliamentary Under Secretary of State – Anne Milton MP
• Parliamentary Under Secretary of State – Earl Howe

Only Lansley has a bio on the official DH site:

Mr Lansley was educated at Brentwood School, Essex and the University of Exeter, where he was President of the Guild for Students. He began his own career as a civil servant, working at the Department of Trade and Industry.

In 1992 Mr Lansley was awarded a CBE for running the Conservative campaign for the 1992 General Election. In 1997 he was elected MP for South Cambridgeshire, and joined the Shadow Cabinet as Health Secretary in 2003.

Mr Lansley lives in South Cambridgeshire with his wife and their two children, he also has three children from his first marriage.

However, these are the Party bios (Burstow is a LibDem); I’ve edited these to take out some of the political wiffle. All have some background in health, although less in social care, and Milton is a nurse.

Paul Burstow

Paul Burstow was born at St Helier Hospital, Carshalton. He comes from a family of tailors and seamstresses. His father was a Saville Row tailor.

Paul Burstow has been MP for Sutton and Cheam since 1997. Prior to his election he headed up the Liberal Democrat’s Local Government Unit and was on Sutton Council – 1986-2002.

Since 1991 when he was appointed to chair the Council’s Disability Forum, Paul has taken an active interest in disability issues. He was responsible for establishing a multi-agency group on disability issues and for pushing through the Council a comprehensive disability policy for the Borough.

He stood as a Liberal Democrat Parliamentary candidate for Sutton and Cheam in 1992 achieving the biggest swing to the Liberal Democrats in Greater London. He fought the seat again in 1997 defeating the incumbent Conservative MP and won again in 2001 and 2005.

On election to Parliament he became a junior frontbench spokesman on local government. In the autumn of 1997 Paddy Ashdown appointed him to lead the Party’s local government team in the Commons. In 1999 Charles Kennedy offered him the older people brief, outside the Shadow Cabinet. After the 2001 General Election Paul joined the Shadow Cabinet with the cross-cutting brief of older people and social services. The brief involved shadowing Government policy and performance on a wide range of matters effecting the vulnerable. From October 2003 to May 2005 Paul headed the Party’s Health Team as Shadow Secretary of State for Health, and between July 2005 and March 2006 he held the position of Shadow Minister for London. In March 2006 Paul was elected by his parliamentary colleagues to take on the role of Liberal Democrat Chief Whip.

In September 2003 Paul Burstow was named by the Guardian newspaper as one of the most influential people in public services and social policy in its ‘Influencers 100′.

According to the Guardian it considered four main criteria: influence over policy, delivery of services and professional practice; transformative power – the ability to change institutions, places or perceptions; financial clout; and political muscle – judged either by proximity to Tony Blair and Gordon Brown, or by robust and influential independence from Downing Street.

Mr Burstow was one of just five Members of Parliament listed by the paper, the others where Oliver Letwin, Frank Dobson, Steve Webb, and Frank Field.

The Guardian described Mr Burstow as: “One of the most knowledgeable and effective politicians on older people’s issues, the Lib Dem spokesman at times seems the only parliamentarian taking a real interest in elderly care, and has almost single handedly kept older people’s issues on the political agenda. He constantly wrongfoots ministers and has played a key role in exposing scandals of over-medication and elder abuse.”

Simon Burns

Simon was born in September 1952. He was educated at Christ the King School, Accra, Ghana; Stamford School, Stamford, Lincolnshire; and Worcester College, Oxford, where he obtained a BA Honours Degree in Modern History. He also has an Honorary Doctorate of Philosophy from Anglia University. He has a daughter, Amelia, and a son, Bobby.

Simon was Member of Parliament for Chelmsford from June 1987 – April 1997, for West Chelmsford from May 1997 to April 2010, and elected Member of Parliament for Chelmsford in May 2010.

From 1975 to 1980 he was Political Adviser to the Rt. Hon. Sally Oppenheim MP. From 1980-83 he was a journalist and company director of What To Buy for Business magazine, and from 1983-87 was on the Policy Executive of the Institute of Directors. He has been active in politics since 1970 when he was a founder member of the Rutland and Stamford Young Conservatives, and founder and Chairman of the Stamford School CPC.

In 1972 he worked for Senator George McGovern in his presidential election bid against Richard Nixon. In December 2007/January 2008 he spent 10 days working on Hillary Clinton’s Presidential Campaign in the New Hampshire Primary. From 1973-75 he was a committee member, Political Action Officer and Secretary of Oxford University Conservative Association, and a member of the Oxford Union.

Simon has been Parliamentary Private Secretary to Timothy Eggar MP, and the Rt. Hon. Gillian Shephard MP, at the Ministry of Agriculture, Fisheries and Food until July 1994. He has also been Assistant Government Whip (1994-1995), Lord Commissioner of Her Majesty’s Treasury (1995-1996), & Parliamentary Under-Secretary of State at the Department of Health (1996-7).

In June 1997 he was appointed opposition Front Bench Spokesman for Social Security, a position he held until August 1998 when he was appointed Front Bench Spokesman for Environment, Housing and Planning, until June 1999. He was elected a member of the executive at the 1922 Committee in July 1999 and Treasurer of the 1922 Committee in November 1999. He was a member of the House of Commons Health Select Committee from 1999 – 2005.

In September 2001 Simon was appointed Shadow Health Minister and was reappointed to this position in May 2005. From December 2005 to May 2010, he was the Senior Whip in the Opposition Whip’s Office and since May 2010, he has been Minister of State at the Department of Health.

Aside from his Shadow Ministerial duties, one of Simon’s proudest achievements in Parliament since 1997 was successfully piloting through Parliament his Private Member’s Bill – the Football (Offences and Disorder) Act 1999 – to tighten up the law on football hooligans, and pressuring the Government to strengthen legislation further in 2000 by giving the courts the power to withdraw hooligans’ passports and prevent them from causing trouble abroad.

Anne Milton

Anne was born in 1955, is married to Graham (who is a doctor) and has four children. She was educated at Haywards Heath Grammar School in Sussex, and trained as a nurse at St Bartholomew’s Hospital in London. Anne worked for the NHS for 25 years. Anne has a wide range of experience in the NHS. She has nursed in hospitals, as a district nurse (and yes, with a bicycle!), worked in research and supporting GPs and nurses working in palliative care. She also pioneered a scheme to look after people who were sent home early from hospital. Her last job in the NHS was to give medical advice to councils and housing associations.

Anne loves gardening, has been a keen runner (although better on stamina than speed!), and is an avid reader, although her family are at the heart of her life. With two children still at school and two a bit older, Anne can rely on them to keep her in tune with all the issues that come up for young people.

Anne has lived in Surrey since 1994 with her family and was thrilled to have been elected as Member of Parliament in May 2005. Having been bought up in Sussex she understands only too well the problems facing the South East in general and Guildford in particular.

Anne became involved in politics in the early 1990’s, though in the past she was a union steward for the Royal College of Nursing and was also involved in the National Childbirth Trust. Before being elected as an MP for Guildford Anne was a borough councillor for five years in Surrey. She was Conservative Group Leader and was also Vice Chairman of the Conservative Medical Society.

In Parliament Anne was appointed to the Health Select Committee in 2005 until she was made Shadow Minister for Tourism, Gambling and Licensing.  She was appointed Shadow Minister for Health in 2007, with responsibility for policy on mental health, maternity services and healthcare associated infections.

Earl (Frederick) Howe

Earl Howe was born in 1951. He was educated at Rugby School and Christ Church, Oxford, where he read Mods and Greats. After leaving University in 1973, he joined Barclays Bank and served in a number of managerial and senior managerial posts both overseas and in London. In 1987 he was appointed London director of Adam & Co. plc, the Scottish-based private bank, where he remained until 1990.

Having inherited his title from his cousin in 1984, Lord Howe left banking to concentrate on his parliamentary activities and on running the family farm and estate in south Buckinghamshire. In 1999 he was appointed Chairman of LAPADA, the country’s largest trade association for the fine art and antiques trade.

Amongst a number of charitable appointments, Earl Howe is President of the National Society for Epilepsy, President of the South Bucks. Association for the Disabled, Patron of the Chiltern Society, a Patron of DEMAND, Honorary Treasurer of the Trident Trust, a member of the Committee of Management of the RNLI, President of the Abbeyfield Beaconsfield Society, a trustee of Milton’s Cottage, a trustee of RAFT (Restoration of Appearance and Function Trust), a trustee of Sir William Borlase’s Grammar School, Marlow and Hereditary Governor of the King William IV Naval Foundation.

He is married with three daughters and a son.

In 1991, Lord Howe became a government whip in the House of Lords with responsibilities, successively, for transport, employment, defence and environment. Following the General Election of 1992 he was appointed Parliamentary Secretary (Lords) at the Ministry of Agriculture, Fisheries and Food; and in 1995 Parliamentary Under-Secretary of State at the Ministry of Defence, a post he relinquished at the 1997 General Election.

He has been opposition spokesman for Health and Social Services in the House of Lords since 1997. He is an elected hereditary peer under the provisions of the House of Lords Act 1999.

Apart from his frontbench responsibilities, Earl Howe’s special interests include penal affairs and agriculture. He is a member of the all-party groups on penal affairs, abuse investigations, pharmaceuticals, adoption, mental health and epilepsy.

Having sat through the first leaders’ debate last night I thought I should start and quite possibly finish my election coverage for the 2010 UK General Election. I didn’t actually see all of it, because our daughter-in-law stranded in California by volcanic ash rang up at the crucial point, not realising that history was being made on UK telly.

I’ve had a look at the main political party manifestos, and give below excerpts about palliative and end-of-life care and social care and social work from each. Of course, nobody much reads manifestos; we rely on news coverage for thinking about what the parties stand for. In general this is sensible, since detailed points in manifestos are likely to be lower priority if any of them get into unfettered power. Probably the best guide to what might happen to end-of-life and social care is the overall picture of the world as seen from a political party, because that’s what we’re going to have to fit in with. You can make the best judgment about that from the press coverage and your view of the general attitudes displayed by the party leaders. On the other hand, end-of-life and social care are so low priority, to politicians and the media-represented public mind, that if some party has bothered to say something specific, it’s quite likely to get taken up afterwards. Why bother to reinvent what you think if you never knew you were thinking it anyway?

One of the interesting features of the main parties, which has not had much press coverage, is the proposal to have more talking therapies (I suspect because people like them more than medication and they’re probably cheaper than doctors dispensing medication and certainly cheaper than putting people in mental hospital).

There’s not much detail about this, but in the Labour manifesto they’re part of the ‘it’ll be cheaper in people’s own homes’ paragraph, alongside tele-care, and note that it’s not for everyone who needs psychological care, but only for those with Alzheimer’s and the like. Good, but scarcely recognising the wish and need for more psychological care.

And for the Conservatives it’s in the public health section and mentions ‘effective talking therapies’. This probably means not clinical psychology (more specific than talking therapies and it would be expensive, whereas rather lesser ‘talking’ therapies would be cheap). Obviously they won’t be supporting anything that doesn’t have a bevy of random-controlled trials to back it up. So that’s all right then, there won’t be a lot of talking therapies to pay for.

Labour Party (2010) The Labour Party Manifesto 2010: A future fair for all. London: Labour Party.

On the web: http://www2.labour.org.uk/uploads/TheLabourPartyManifesto-2010.pdf

This is a chunky document, which as befits the party in power does actually cover the main points. Each main sector of government is covered in separate chapters, which start off with the ‘challenge’ (we don’t of course have problems in modern political discourse) and how their programme of national renewal is going to deal with it (obviously the party in power cannot say it’s gong for change, so we’re all going to be comprehensively renewed)..

Here are the main points on health  (p.4:2)

The challenge for Britain

To build a better health service by protecting NHS spending and by shifting to more preventative and personal care, clear patient guarantees and greater care in the home. The Tories will not introduce the necessary reforms, would fail to guarantee access to services, usher in a care postcode lottery, and put the interests of patients second.

The next stage of national renewal

- Legally binding guarantees for patients including the right to cancer test results within one week of referral, and a maximum 18 weeks’ wait for treatment or the offer of going private.

- Preventative healthcare through routine check-ups for the over-40s and a major expansion of diagnostic testing.

- More personal care, with the right in law to choose from any provider who meets NHS standards of quality at NHS costs when booking a hospital appointment, one-to-one dedicated nursing for all cancer patients, and more care at home.

- The right to choose a GP in your area open at evenings and weekends, with more services available on the high-street, personal care plans and rights to individual budgets.

- Access to psychological therapy for those who need it.

I also looked at the main points on families and older people (p6:2).

The challenge for Britain

To support all families in a rapidly changing world that places new and rising demands on all of us. We will help families to realise their aspirations — whatever their circumstances — and we recognise the huge contribution older people make to society and to family life. The Tories propose a marriage tax allowance that is divisive and unfair, will neglect growing care needs among frail elderly people and disabled adults, and prioritise only the privileged few.

The next stage of national renewal

- More help for parents to balance work and family life, with a ‘Father’s Month’ of flexible paid leave.

- A new Toddler Tax Credit of £4 a week from 2012 to give more support to all parents of young children – whether they want to stay at home or work.

- The right to request flexible working for older workers, with an end to default retirement at 65, enabling more people to decide for themselves how long they choose to keep working.

- A new National Care Service to ensure free care in the home for those with the greatest care needs and a cap on the costs of residential care so that everyone’s homes and savings are protected from care charges after two years in a care home.

- A re-established link between the Basic State Pension and earnings from 2012; and help for ten million people to build up savings through new Personal Pension Accounts.

My searches of the document produced the following – the sole mention of social work as such in any manifesto; obviously Ed Balls has got the presenrtly accepted policy into the manifesto, in spite of the spat about who’s going to run the College:

3:6 …Social work training will be radically overhauled, raising the status and standards of the profession, and we will establish a National College of Social Work. We will publish detailed Serious Case Review summaries that explain the facts, but keep full reports out of the public domain in order to protect children’s identities.

End-of-life care also uniquely gets a mention, but in relation to the voluntary sector role in health care

4:3 We will support an active role for the independent sector working alongside the NHS in the provision of care, particularly where they bring innovation – such as in end-of-life care and cancer services, and increase capacity. We will be uncompromising in expecting high standards from all NHS services – and in the coming period we will expect PCTs to challenge all services to achieve the highest quality. Where changes are needed, we will be fair to NHS services and staff and give them a chance to improve, but where they fail to do so we will look to alternative provision.

They’re also still keen on getting NHS staff to set up social enterprises to run NHS services. Particularly nurses, but no mention of doctors, whose negotiating oomph seemed to scar Mr Blair’s back. Perhaps they think nurses are less business-like, or more pliable and cheaper. They have also heard the message about not keeping on changing everything all the time.

4:4 Central to our agenda for improvement is the hardworking NHS workforce. We will continue the process of empowering staff – freeing them from bureaucracy and ensuring they get proper support. We will expand the role of NHS nurses, particularly in primary care, in line with the best clinical evidence. And across the NHS we will extend the right for staff, particularly nurses, to request to run their own services in the not-for-profit sector. To strengthen local accountability, we will increase the membership of Foundation Trusts to over three million by the end of the next Parliament.

The NHS will benefit from a period of organisational stability: we will make no top down changes to the structure of Primary Care Trusts or Strategic Health Authorities during the next Parliament, and we will ensure stability in the hospital payment system.

Then there is a commitment to palliative care in people’s homes. They’re obviously still bedazzled by the Marie Curie marketing machine, or perhaps they just think someone else has heard of them too; it’s like all of the party leaders in the telly debate mentioning people they met out campaigning in every answer they gave (only those who agreed with them of course, but perhaps party leaders are only allowed to meet people who agree with them). It got irritating after a while, and swooning on Marie Curie has the same effect.

4:5:We will offer more personal healthcare. All cancer patients will be offered one-to-one dedicated nursing for the duration of their care and we will work with Marie Curie Cancer Care and other providers to guarantee everyone who wants it the opportunity to receive palliative care in their own home at the end of their lives.

Like all the other parties, Labour is keen on carers: Keen on Karers will be the new multi-party slogan: they’re so cheap and everyone can agree how wonderful they are. Labour actually admits this is why they’re keen:

6:2 We need services that help families manage these new pressures without creating huge additional costs. We need to go further to secure fairness in later life and ensure that those who plan and save for their retirement are rewarded for doing so. The additional costs and burdens of old age must not fall disproportionately on those who have made provision for themselves and their families.

This leads on a big section on how they are going to do the National Care Service; it mirrors the recent White Paper (see my previous post) and it is actually a good summary of the White Paper. In the context of a manifesto (i.e. something that will be read by non-specialist journalists, re-ablement has become a physio service). Note the regular mention of controlling costs; it’s good to know that physiotherapists will be playing their part alongside social workers in keeping costs down:

6:5-6 The National Care Service and an age-friendly NHS

The cornerstone of a fair future is ensuring everyone who needs care and support, whether through old age or disability, is properly looked after. We will establish a new National Care Service and forge a new settlement for our country as enduring as that which the Labour Government built after 1945. It will be a new settlement for all those who need care, for the carers who devote their time and energy for the good of others, and for families across the country. The care of both older people and disabled adults will be transformed; unfair postcode lotteries removed; more people will be looked after at home; and family homes and savings will be protected from catastrophic care costs. To provide independence and control for everyone with a care need we will continue to expand the use of individual budgets. And to drive up standards, we will develop a skilled and highly motivated workforce.

The first stage of reform will be to create a step-change in the provision of services in the home and in our communities. From 2011 we will protect more than 400,000 of those with the greatest needs from all charges for care in the home, and we will create a national physio support service helping people in every area of the country to regain their independence and confidence after a crisis or the first time they need care. These services are essential if we are to ensure more people are looked after in their homes and overall costs are to be controlled. They will be funded through savings and efficiencies in the health budget and in local government.

During the next Parliament, the second stage of reform will centre on the development of national standards and entitlements to ensure high quality care for all, and an end to the unfair postcode lotteries that affect too many families. We also want to remove the fear that families will lose the family home in order to pay for care bills. So, from 2014, the National Care Service will cap the costs of residential care so that  everyone’s homes and savings are protected from care charges after two years. We will pay for this through our decision to freeze Inheritance Tax Thresholds until 2014-15, by supporting more people over the State Pension Age to stay in work if they so wish, and through efficiencies across the NHS and the care system.

The final stage of reform, after 2015, will be a comprehensive National Care Service, free at the point of use not just for older people, but all adults with an eligible care need whoever they are, wherever they live and whatever condition leads to them needing care. At the start of the next Parliament we will establish a Commission to reach a consensus on the right way of financing this system. The Commission will determine the options which should be open to individuals so that people can have choice and flexibility about how they pay and to ensure that the National Care Service is funded in a fair way.

The Commission will make recommendations in time for implementation of the third stage of reform after 2015, once these proposals have been put to the public at a general election. Across the NHS we will improve and personalise care for the elderly and their families. This will mean more NHS services available in the home, with greater use of tele-care and personal nursing; reform of the GP contract to help ensure those with late-life depression and anxiety are diagnosed and supported; and better services for those with dementia and Alzheimer’s so that every area of the country has access to psychological therapy, counselling and memory clinics.

There will be an end to the age discrimination that has too often seen older people disadvantaged in the provision of health services.

The section on communities (that is, local government) extends the NHS intention to get staff to run social enterprises to provide services. So social workers can run their own child protection teams and get the blame for everything even more directly than at present..

7:5 We will extend the right of public-sector workers to request that they deliver frontline services through a social enterprise. Public-sector workers in the NHS currently enjoy this right. We will extend this to more public services, including social care, with greater community involvement in their governance.

Right, on to the Conservatives.

Conservative Party (2010) Invitation to Join the Government of Britain: The Conservative Manifesto 2010. London: Conservative Party.

On the web: http://www.conservatives.com/Policy/Manifesto.aspx

The main emphasis of this Manifesto is the public involvement argument. It is a fairly thick (I don’t mean stupid, I mean long) document, like Labour’s, but with less on end-of-life and social care. However, the line is much the same. The main point on health also includes a mention of social care (demonstrating joined-up thinking) as follows:

45 Back the NHS

We will back the NHS. We will increase health spending every year. We will give patients more choice and free health professionals from the tangle of politically-motivated targets that get in the way of providing the best care. We will give patients better access to the treatments, services and information that improve and extend lives, boost the nation’s health, and reform social care.

Then we’re on to the public do-it-all-yourself theme, which leads on to a mention of personalisation and independent budgets, merging health and social care funding, although not the actual service as far as I can see. Is this possible? I doubt it, in which case, see below my comments on the LibDems and merging health and social care into a seamless service.  Note though the continuing commitment to cash for children’s hospices (before they’ve only said they’ll look at this, now they’re going for it). More important, they are proposing a per-patient payment for all hospice patients. Once the Treasury sees that it will probably disappear, although they don’t actually say they are going to pay all the costs of the patients, so they could just give voluntary hospices a penny per patient and meet their manifesto.  There’s also positive stuff on carers, as with all the main parties:

48 Take control of your care

Where possible we want to devolve control over health budgets to the lowest possible level, so people have more control over their health needs. For people with a chronic illness or a long-term condition, we will provide access to a single budget that combines their health and social care funding, which they can tailor to their own needs.

48 We will provide £10 million a year beyond 2011 to support children’s hospices in their vital work. And so that proper support for the most sick children and adults can continue in the setting of their choice, we will introduce a new per-patient funding system for all hospices and other providers of palliative care.

Then, on to social care: they’re pushing their rather stupid line about death tax, probably because they haven’t heard that this is already what happens when local authorities defer your care payments. However they slide from choice to a focus on (very cheap) help for carers, rather than (impossibly costly) doing something about the real costs of social care for older people.

48-9 We reject Labour’s plans for a compulsory ‘death tax’ on everyone to pay for social care, regardless of their needs. We want to create a system which is based on choice and which rewards the hundreds of thousands of people who care for an elderly relative full-time. So we will allow anyone to protect their home from being sold to fund residential care costs by paying a one-off insurance premium that is entirely voluntary. Independent experts suggest this should cost around £8,000. We will support older people to live independently at home and have access to the personal care they need. We will work to design a system where people can top up their premium – also voluntarily – to cover the costs of receiving care in their own home.

An interesting move is to focus on public health (presumably because they’ll be devolving and privatising all actual health services) although we also get an element of the Conservative view that it’s the unhealthy choices of the working classes that have to be put a stop to. So, instead of taking responsibility for educating people about healthy choices and stopping the food and drink manufacturers profiteering from marketing unhealthy choices, local communities who don’t become healthier will have their health budgets cut back. This ‘paid according to how successful they are in improving their residents’ health’ is inconsistent with the bulleted point that says they will spend most on the poorest areas.

A healthier nation

Lifestyle-linked health problems like obesity and smoking, an ageing population, and  the spread of infectious diseases are leading to soaring costs for the NH S. At the same time, the difference in male life expectancy between the richest and poorest areas in our country is now greater than during Victorian times. We will turn the Department of Health into a Department for Public Health so that the promotion of good health and prevention of illness get the attention they need. We will provide separate public health funding to local communities, which will be accountable for – and paid according to – how successful they are in improving their residents’ health. In addition, we will: introduce a health premium

– weighting public health funding towards the poorest areas with the worst health outcomes;

- enable welfare-to-work providers and employers to purchase services from Mental Health Trusts; and,

- increase access to effective ‘talking’ therapies

That’s the Conservatives; now moving on to party 3.

It’s easy to cover the LibDem manifesto, there’s not a lot to interest us, partly because they’ve gone for briefer and more focused; that is, don’t bother within anything so unimportant as end-of-life and social care. End-of-life and palliative care do not get a mention at all, neither does social work but social care comes up twice, one mention and one item about long-term care indexed to social care. Yes! Don’t faint, but they have an index and their indexer knew that long-term care was about social care.

However, perhaps you’d better practise fainting again, because they’re going to merge health and social care to provide a seamless service. Does that mean remerging children’s social care, too, as the Greens are proposing (see below)? I suspect they haven’t thought about that, because they’re thinking in current silos. Does that mean paying for a totally free social care service on the same basis as the NHS? If not, the differential will be hard to maintain. And does it mean that they don’t care about the interface between social care and housing, social security, criminal justice, youth work and a whole range of local council services which will be made more difficult because social care will then have to kow-tow to healthcare priorities (i.e. healthcare for individual patients and particularly their consultant physicians are god and getting people out of expensive hospitals is the most important thing in the world rather than the broad needs of families and communities)?

Liberal Democrat Party (2010) Liberal Democrat Manifesto 2010. London: Liberal Democrat Party.

On the web: http://www.libdems.org.uk/our_manifesto.aspx

41 Integrate health and social care to create a seamless service, ending bureaucratic barriers and saving money to allow people to stay in their homes for longer rather than going into hospital or longterm residential care.

53 There is a further, serious, long-term crisis facing older people: the sustainability of the systems for providing long-term care. It is unacceptable that this challenge has been treated as a political football. A Liberal Democrat Government would immediately establish an independent commission to develop future proposals for long-term care that will attract all-party support and so be sustainable. We believe that the eventual solution must be based on the principles of fairness, affordability and sustainability.

The Commission idea is like Labour’s proposal (and the LibDems are also into calling problems challenges), but a bit more instant – after all Labour has had commissions before, and they know that when you get the report, it’s harder work to pitch it into the long grass again, so they’re probably going to make sure it says what they want it to say before they start.

Now I’m on to the smaller parties. It’s worth looking at them because they often have clever ideas that the other parties will pick up. And if we get a hung Parliament, some of their better ideas may well get some traction.

Green Party (2010) Green Party General Election Manifesto 2010: fair is worth fighting for. London: Green Party

On the web: http://www.greenparty.org.uk/assets/files/resources/Manifesto_web_file.pdf

The first thing about the Greens is that they’re going for assisted death as a policy, but only if there’s the highest level of palliative care available, whatever that means. So that’s no assisted death in the near future, then. But it does reflect an awareness of what the socially-aware public actually think:

23 Provide the right to an assisted death within a rigorous framework of regulation, and in the context of the availability of the highest level of palliative care.

Then there’s a big section on social care, which is mainly sloppy kisses for carers, rather than applying their mind to what social care services should be about. However, they do suggest re-merging child and adult social care, which a lot of councils are actually doing. It’s a sensible move,because councils have found out that there’s no real symbiosis between the universal education service and highly selective children’s social care. That always was a silly idea. Also, the Greends have realised, as the Conservatives would if they really were thinking about families, that the 1970s reorganisation of social services was about creating a family service, because all sorts of people live in families, including mentally ill, disabled and older people, and you need to deal with the things that are challenging them (see, I’ve learned the modern term for problems) in a coordinated way that looks at the whole family, not sending a whole lot of different people along from different departments to deal with little bits of the family’s…challenges.

13-14  A fair deal for social carers

A vast proportion of social care in the UK is provided by unpaid family carers who  save the NHS £87bn a year. Carer’s Allowance (CA) is an income-capping straitjacket. CA paid to family carers aged 16 and over is the ‘Cinderella Benefit’: £53.10 for a 35-hour week minimum commitment is no real compensation. Child carers under the age of 16 receive nothing at all. They are perhaps our most vulnerable child labourers, often working very long hours and bearing emotional burdens far beyond their years. These children receive no financial support and in many cases work longer hours than their older counterparts. Their schooling and education are often compromised and some simply never have the chance to ‘play’.

The Green Party is committed to:

- A more generous Carer’s Allowance, increased by 50% to £80pw.

- Offering support to people who want to give care, recognising their pivotal position while increasing the amount of care available.

- Healing the rift between adults’ and children’s social services that was created by New Labour.

- Providing more short breaks to families, including disabled people or those with long-term illnesses. Such early intervention schemes have been shown to save money by preventing crises.

- Improving working conditions for professional staff at all levels, paying for preparation time and follow-through, as well as contact time, and providing more in-service training to help cope with the vast spectrum of service user requirements.

- Instituting workforce health checks as advocated by UNISON.

- Repealing the oppressive Welfare Reform Act (2009) as a prequel to supporting people through lifelong development for their own and the planet’s well-being.

- Cancelling the DWP benefit entitlement assessment contracts with private sector.

- Restoring the link between state benefits and earnings.

- Giving carers cheaper local travel on bus, trains, tube and trams.

Finally social care for older people is going to be free á l’Ecossaise (the Greens haven’t learned the correct jargon for ‘the elderly’ yet; or perhaps they realise that nobody else understands the correct jargon). Free social care is actually a very logical move because it means you don’t have to face up to all the boundary disputes about what is health and what is social. The problem is, it costs – a lot:

22  In particular, maintain the principle of a free NHS by implementing in England  and Wales the scheme that provides free social care to the elderly in Scotland. If the Scots can do it, so can the rest of us. This would be phased in, costing about £3bn in 2010 rising to £8bn pa, and could create 120,000 jobs.

United Kingdom Independence Party (2010) UKIP Manifesto: Empowering the people. London: UKIP.

On the web: http://www.ukip.org/media/policies/UKIPManifestoWeb.pdf

UKIP have a short and pithy manifesto, and none of my search terms came up. They major heavily on immigration. But they have two interesting and original proposals. Healthcare, is going to be run by elected ‘County Health Boards’ in their worldview. Perhaps this reflects the reality that they don’t expect to win any seats in the cities, where there aren’t any counties. But actually elected bodies running healthcare as part of, or closely connected to, local authorities, is not a bad idea and (whisper it quietly in their presence) quite a lot of the rest of Europe does it.  They are also proposing to roll all long-term pensions into one pension-type provision and all welfare benefits into one ‘basic cash benefit’ at the same level as jobseekers allowance or income support. This would cover a very wide field, including for example student grants (just welfare scroungers really, none of this nonsense about education). The argument for this is that they can get rid of a lot of bureaucrats (they’re very much a ‘bomb the bureaucrats’ party) because they wouldn’t have to differentiate between and means test for a lot of different benefits. Not a bad idea, although I think they might run into some problems with the Daily Mail and its readers, who still support the centuries-old maxim that the deserving should get more than the others, which means sorting out the sheep from the goats.

Plaid Cymru (2010) Think Different, Think Plaid: 2010 Westminster Manifesto Cardiff: Plaid Cymru.

On the web: http://www.plaidcymru.org/uploads/publications/467.pdf

This proclaims itself as different, because it’s the first one with a publisher’s address outside London. It’s also brief, with lots of big colour pictures and not a lot of text, so it’s the prettiest, but none of my searches came up. However there is one item on social care, which says it’s just nursing really. What I think about this is that we need to improve caring skills in the social care workforce. But I’d rather have a focus in adult residential care on deveoping social lives and family and community relationships, which I don’t think fits with mujrsing skills so well:

Plaid Cymru remains committed to free care provision for older and disabled people and we call for the transfer to the National Assembly of the necessary powers. We oppose means-tested allowances and we will campaign to abolish the distinction between nursing and personal care.

I’m not sure what they mean by means-tested allowances, presumably this does not refer to people paying for their own care, but all social security payments. Could be difficult financially and in gaining public support. However, they also want a ‘living pension’ for older people and others such as disabled people, so there seems to be a consistent view for an old style welfare state. Good heavens, Wales will be just like Sweden next..

I could not find a manifesto yet for the SNP or any of the Northern Ireland parties, although the DUP, Sinn Féin and SNP have a variety of policy statements on their website. If something turns up later, I’ll try to cover it.

Finally, http://www.general-election-2010.co.uk/votes/bnp-policies, a website of the UK Politics Forum, which is a good place to follow the election, says that there is not (yet) a British National Party manifesto, but you can look at policy statements on its website, too.

On the web:

BNP: http://bnp.org.uk

DUP: http://www.dup.org.uk/default.htm

Sinn Féin: http://www.sinnfein.ie

SNP: http://www.snp.org/home

Introduction

I return to last month’s Law Commission consultation on changing the law on adult social care; you have to reply by July 1^st if you’re going to say anything. Do not rely on my account below to reply: you need to have the question numbers and look at the detailed argument to comment appropriately.

You can see the consultation document on the internet at: http://www.lawcom.gov.uk/docs/cp192.pdf

The aim of this post is to give you an idea (if you didn’t know this) of how complicated it is and the main areas covered. It’s very comprehensive, so this is one of my longer posts. To summarise a 200 page document, I collapse many of the sections and do not go into the detailed argument for and against many of the proposals; instead I try to give you an idea of what the debate is about and then what the Commission proposes to do about it. I have tried to make clear where I am expressing a view, where the Commission is making proposals or recommendations or where I am simply giving you information about what they say.

This introduction aims to sum up the approach for you in advance of reading (or avoiding) the detail. The Commission proposes that there should be some statutory principles, to establish the general aims and direction of the legislation. They then debate the main approach to the law, and conclude that they should establish the processes that are involved in adult social care, rather than specifying particular client groups or services. Process means things like assessment, eligibility and care planning. This means that you can then establish controls on how the process works, either in law or, for more detailed matters, through regulation. Social workers may worry about this, because it legislates for an important emphasis on assessment, rather than a care and treatment function, for this important service within social work.

The Commission’s consultation document is incredibly informative; after more than forty years of working on this stuff, I learned quite a lot about the problems in how the detail of the law works; and actually how the detail of all law works. If you know social care law, it’s well worth reading simply for an education in how legal matters arise and are dealt with in general. Generally, I thought the proposals were well-thought-out and sensible. They would certainly resolve a lot of uncertainties and lack of clarity.

Now for the problems. The Commission’s remit does not include political decisions, so they cannot deal with matters that require a political resolution, such as how much money we are prepared to spend on social care and what quality and level of services you can provide. This cannot be resolved legally, although the framework the Commission proposes would allow this to be settled to some degree through government regulation and guidance. However, it tells you nothing about what level of services are going to be provided, and offers no real rights to service. Because it is clear that social care is and will remain discretionary salami-slicing services for budgetary reasons is a real problem in social care generally. I think everyone accepts that it is massively underfunded now and that will be worse in the future. Unlike the NHS legislation, which gives the secretary of state a duty to provide for all reasonable needs, the social care legislation remains very much more open to cutbacks, particularly also because the local authority responsibility does not put the problems at the secretary of state’s door. People compare this with the approach in the NHS, for all its faults, and they feel they’re not getting the real deal from social care. This will continue to be a problem. We can see this in the (completely unmentioned in this consultation) lack of clarity between NHS continuing care and local authority community care. My view is that it does not adequately define or regulate the boundary between NHS community and primary care provision.

For us end-of-life care people, this is a topic that is not really covered, although the line would be that this would be covered by statutory instruments or (more likely) government guidance. This is an example of why the process approach produces potential problems, because it sets no line about who should receive what. That may be legally appropriate, they make a good case that it is, but I think that there is a question about whether it is socially appropriate. So I want to pick up some of their ideas that they ask for comments about and make it clear that there should be clear aims set in the statutory principles for social care, and additional principles such as responsibility to ensure people’s well-being in making assessments and a duty to make afrter-care arrangements on discharge from in-patient services (and prison).

You can tell how important the proposals are because the main pieces of legislation go back more than sixty years and the main topic areas covered are:

- Statutory principles – should there be some to provide overall direction
- Community care assessments
- Carers’ assessments
- Eligibility for services
- The main provisions in the main pieces of legislation
- Ordinary residence and portability
- Scope of adult social care services
- Delivery of services
- Joint working
- Safeguarding adults at risk
- Strategic planning

If they’re going to legislate on these topics, it’s going to be life-changing for most people in adult social care. So I’ll cover each of these in turn.

The aims of the review: I think service users should have the protection of rights to social care

Adult social care services are important to most people at some point in their lives, not only because of their own care needs (in the end most of us will have them) but because people in our families and communities will have care needs that we will have to help deal with. For some people, care will be an important aspect of their lives. The present legislation is a patchwork of Acts going back a long way. The Review covers England and Wales, although there are some differences in Wales. The proposals aim to be resource-neutral because the Law Commission is given a brief to reform a lump of legislation as it is, not make political proposals for how it should be changed.

Among the current policy issues identified that may have an impact on the review are the introduction of personalisation policy, and in particular direct payments or independent budgets, the government’s wish to switch to a more preventive approach , rather than concentrating resources on people with high needs and the current reviews of the funding of personal care services mainly for older people.

Should there be a single piece of legislation covering adult social care? I say ‘yes’, because it would clarify and bring together a confusing mixture of legislation with different aims and concerns.

What should the structure of legislation be: the Act should specify the responsibilities of local authorities, statutory instruments should be used to expand on or define these and directions from the Secretaries of State (plural because it covers England and Wales governments) should be used for guidance seeking to achieve changing policy and practice. The consultation asks whether there should be a code of practice to bring together the guidance. This seems sensible to me, and we’re used to this way of proceeding. The Code would often change with governments or after major policy changes.

The Review makes the point that legal definitions have not been very influential; they are not clear enough, while process guidance, such as the Fair Access to Care Services guidance FACS) which sets out how priority decisions should be made, have more of an impact on how the system works. Their main approach, therefore, is to use the legislation to establish tightly-defined processes for determining whether someone should have community care services, rather than trying to define these in advance. My view is that in principle this approach  allows for greater flexibility and creativity in providing services; the problem with it is that it does not provide many rights to services, only the right to be assessed. It is a recipe for constant salami-slicing of the quality and extent of services that people receive.

At a meeting I was at recently, someone gave the example of an assessment that provided two carers periodically to assist a disabled woman take a bath. On review, this fairly minimal care was replaced by a sponge on a stick, on the grounds that because the person could stand if they held on to their washbasin, this would enhance their independence and they could use it as often as they liked, rather than having scheduled visits from carers. Cheap cheap cheap: such is the approach to dignity and respect in social care. We desperately need some rights for social care service users, or this is what is going to happen in these budget conscious times. The review proposes, however, to have legislation with a list of exclusions (to define the interface with the NHS), a list of services included in community care and a list of principles which would specify how services would go about making decisions. I don’t think this is enough to protect service users.

Statutory principles: I think we should go for stating principles of service in the law.

The document moves on to look at this list of principles, which would be the basis of the services. Principles can either say what should be the most important thing. An example is primacy as in the child care legislation: the child’s interests should be paramount. Alternatively, they can direct decision-makers to take particular points into account, for example the principle of the least restrictive alternative in the Mental Capacity Act. Finally, principles might list assumptions, such as the unwisdom provision in the Mental Capacity Act that people should not be assumed to have no capacity to make decisions merely because they are making decisions that the professionals think are unwise. So how might this work out in social care law?

The proposed principles are:

- maximise the choice and control of service users
– person-centred planning
– needs should be viewed broadly
– remove or reduce future need
– the concept of independent living
– an assumption of home-based living
– dignity in care
– the need to safeguard adults at risk from abuse and neglect

Pros and cons are stated for each of these; are they too vague (viewed broadly), or just a current fad (person-centred planning), confusing (dignity, where there already are legal principles and the idea can usually support any number of opposing views)? On the other hand, they do express a direction over issues which many people think are important: things like a priority o home-based living and a duty to safeguard. These things are worth stating. It may be that some of the vaguer things are also worth including because they would force people to think about them, or worry that someone will zap them with a court case on ‘take a broad view of my needs’ and that might be a good thing. However, it does mean going to law: people have been prepared to do that for continuing care in the NHS because it’s about money: will they do that over granny’s right to choice? More doubtful I think.

What do you think? They’re asking, we should be telling.

Community care assessment

There are six main areas for proposals in this complicated part of the system:

- there should be a duty to undertake a community care assessment in our future adult social care statute, triggered where a person appears to the local authority to have social care needs that can be met by the provision of community care services (including a direct payment in lieu of services) and where a local authority has a legal power to provide or arrange for the provision of community care services (or a direct payment) to the person.
– a right to have an assessment on request
– the focus of the community care assessment duty should be an assessment of a person’s social care needs and the outcomes they wish to achieve, and should not focus on the person’s suitability for a particular service
– recognise coproduced self-assessments as a lawful form of assessment and/or allow for a pure self-assessment for certain people or groups of people
place a duty on the Secretary of State and Welsh Ministers to make regulations which prescribe details of the assessment process and specify the areas which these regulations must cover
– local authorities should retain the ability to provide temporary services in urgent cases

The three main points of debate are about whether you should have to ask for an assessment and, if the local authority can decide to do one off its own bat, on what grounds they should be able to do so. The aim of these proposals is to get away from a service-based definition; that is, they should not limit their assessments to situations in which they have services to provide. This is needs-led, but it includes the possibility of looking at outcomes. The right to request an assessment is there for those people who might be excluded for some reason. For example, some authorities might not be too keen to do assessments on people with large needs because of stigmatised conditions, such as HIV/AIDS or drug abuse.

There is an interesting discussion of self-assessments. One of the points made is that you can’t have self-assessments for a statutory duty, because local authorities can’t delegate statutory duties. Therefore, any legislation needs to say that it is appropriate for local authorities to work together with service users to produce their own assessments.

The last two points make it clear that the ministers should say clearly what they want done in assessments, so they cannot blame the local authorities for everything that goes wrong, and temporary services in emergencies can still be provided pending an assessment. This might be important in end-of-life care, because you often get the situation where local authorities say they cannot do an assessment for weeks or months and they then don’t do anything, in the meantime the patient dies. Such provision might give a lever to a palliative care service. I’m very much for that, at least partly because the whole local authority system is geared to the long-term, and they are not as accustomed as healthcare professionals to dealing with urgent matters. I also think this provision is needed for, and perhaps should be specifically connected to, safeguarding responsibilities.

Carers assessments: these need to be straightened out and coordinated with community care assessments

The proposals in this area deal with a very complex aspect of social care law, which has grown up over the last fifteen years. There are six proposals again:

- there should be a duty to undertake a carer’s assessment
– the duty to assess a carer should apply to all carers who are providing or intend to provide care to another person, not just those providing a substantial amount of care on a regular basis
– the duty to assess a carer should not be triggered by the carer making a request, but should be triggered where a carer appears to have, or will have upon commencing the caring role, needs that could be met either by the provision of carers’ services or by the provision of services to the cared-for person
– the following carers are not excluded from the definition of a carer for the purposes of a carer’s assessment:

1. a previously unpaid carer who now receives payment for their services through direct payments received by the cared-for person;
2. a carer who is paid for some but not all of the care they provide; and
3. a carer where the local authority believes the caring relationship is not principally a commercial one

- encourage a more unified assessment process for carers and cared-for people
- the carers’ assessment duty should be merged with the community care assessment duty

The first two proposals consolidate the duty to undertake a carers assessment, removing the limit that this responsibility applies only to those who provide substantial and regular care, because these are so hard to define. The third proposal means that the local authority should do an assessment on the same basis as it would decide to do a community care assessment, if it sees need that its services would meet. However – the rights point again – we need to make sure that this does not mean local authorities deciding that they don’t have the services or the money to provide them, so there isn’t a need there to have them.

The last three deal with some of the complexities of carers assessments. The fourth makes provision for the situation where a service user gets a direct payment and then employs an existing unpaid carer, a relative or neighbour for example, or pays for some of the time that they spend and gives the local authority a catch-all flexibility if other non-commercial arrangements exist. The last two are alternatives, and the Commission does not fancy the last, because the interests of carers and cared-for people may be so much at odds. However, some carers have their own needs, and it is difficult to disentangle needs that come from being a carer from your own care needs, and there may also be an issue about who pays when carers and cared-for people live in different local authorities. Only encouraging a more unified assessment may be weak or give a local authority a get-out from doing anything, although the aim would mainly be to require ministers to give appropriate guidance on things like cooperative working.

Most of these ideas are sensible and clear up a very confusing pile of legislation.

Eligibility for services

The Commission points to the confusion that arises from the duty to provide services alongside a discretion to decide whether or not the needs their assessment has identified call for them to provide services. The ministerial guidance allows them to take into account various factors, including resources, but they cannot only take the decision on the basis of resources. In particular, they must take account of duties under the Human Rights Act and Disability Discrimination Act, among other pieces of legislation and specific duties set out in particular pieces of social care legislation. The various guidance, like Fair Access to Care Services, seems to say that local authorities should provide services when they have assessed that someone is in need, but then allows them various discretionary get-outs by using eligibility criteria The legal problem appears to be that local authorities have powers but not duties to provide some services, so if you have a need for them, the local authority can decide it won’t provide them and do something else to meet them – the sponge on a stick problem (see above), even if you are eligible to receive them according to its assessment.

The Law Commission says that under the current legislation local authorities cannot do this; they have to look at the original powers. If they have a duty, they cannot use the eligibility criteria to get out of it, once they have determined that someone needs the service; if they only have a power, it depends on how the legislation specified that power. This is useful guidance for social workers in looking at helping individuals. The Commission usefully makes an analogy with children’s legislation and legal decisions on it.

The proposal to deal with this is as follows:

- a duty on local authorities to:

1. determine whether a person’s social care needs are eligible needs, using eligibility criteria; and
2. provide or arrange community care services (including a direct payment in lieu of services) to meet all eligible needs

How then would you decide on eligibility? The proposal identifies two issues that the ministers should give guidance about:

- a duty on the Secretary of State and Welsh Ministers to make regulations prescribing the risks to independence that will call for the provision of services

- and the objectives that are to be achieved by the provision of services

This fits with the proposals on statutory principles above: people would be eligible for services if there was a risk to their independence (social workers would assess the extent of that risk) and the aims of provision (for example, social workers would assess whether it would prevent further deterioration).

The Commission then looks at personalisation and shows that this is a legal shambles (the Commission is politer than I am about this): it’s not clear that some arrangements for personal budgets are lawful. It’s certainly clear that local authorities cannot tell if they are meeting eligible needs when they allocate a personal budget, because they are not in control of how it’s spent. This is a widely recognised issue in personalisation policy. If you give people choice, you cannot at the same time have a legal duty to provide services. This is one of the problems in providing personal budgets in healthcare, where the Secretary of State has a legal duty to provide all necessary services to meet a health need (see my resource document on continuing care). Since personal budgets for all are politically the in thing, the Commission says that there should be ministerial regulation that complies with the legislation. This is the proposal:

- the Secretary of State or Welsh Ministers may by regulations require that a local authority must allocate a personal budget in fulfilling the duty to meet all needs that are eligible

Services for carers are also a legal and administrative shambles. Again, the Commission is very polite, unlike me, but it’s not clear whether local authorities are using eligibility criteria, or whether if they do or don’t either course of action is lawful in a particular instance. The Commission thinks that probably if a carer had a critical need there would be a legal duty to provide for it. To clear this confusion up, the proposal is:

- there be a mandatory national eligibility framework which local authorities must use to decide whether or not to provide services to carers, and a duty to meet the eligible needs of carers

Legal duties

The Commission then addresses to two main pieces of legislation that confer rights to services. The first is the National Assistance Act 1948, which confers a rights to residential accommodation to people in need of care and attention not otherwise available. Local authority eligibility criteria do not apply here, and this right puts pressure on the system to provide accommodation as a fall-back if care needs cannot be met in other ways, for example by adequate housing and community care services. The complicated legal argument in the Review suggests that because if a statutory eligibility framework is introduced as proposed in the earlier part of the review, local authorities would have to take into account present and future needs, and so they could be forced in law to meet people’s reasonable needs, either by providing accommodation or otherwise. So the proposal is:

- section 21 of the National Assistance Act 1948 should be repealed and that the Government should ensure a proper scheme for the provision of residential accommodation to those people who might lose their entitlement

The Commission is looking for comments about what would happen and who would lose entitlement. My concern about this is that the proposed eligibility scheme allows a fair element of discretion about levels of service, so that over time an underfunded social care service will inevitably tighten up, and there is no pressure to provide services if the local authority is strapped for cash. Again, people may not lose rights, but a rights-based element of the system would reduce the political pressure to avoid responsibility for needs.

The second bit of rights-based legislation is the Chronically Sick and Disabled Persons Act. The same arguments are made and the proposal is:

– section 2(1)of the Chronically Sick and Disabled Persons Act 1970 should be removed from adult social care legislation

It’s phrased in this way because there are some implications for disabled children, so this provision may need to be retained for them. Again a rights-based approach gives way to an eligibility-based approach.

Ordinary residence and portability: my view is that it needs to be more certain what you are going to get and how, particularly if you move

Because they are local, adult social care services are usually provided by the local authority where the service user is ordinarily resident. That is often a duty, and the local authority may also have powers to provide services to others, such as people who are transient for some reason. However, the rules are confusing and inconsistent, so the proposal is:

- the local authority be placed under a duty to provide services for people ordinarily resident in their area and have the power to provide services for people who are not ordinarily resident in their area. In cases of urgent need of residential accommodation, there should be a duty to provide accommodation to those people not ordinarily resident in the authority’s area. Assessments of need and the provision of temporary urgent services should not be limited by the ordinary residence rules.
- the local authority in which the cared-for person lives should be given responsibility for providing carers’ services
- the introduction of: an enhanced duty to co-operate when service users move areas; and if these policies are implemented, a national portable needs assessment and national eligibility criteria

The aim of these proposals is to improve continuity in service provision for people who move. It is not clear whether they would help people to be certain what would happen when they move, because the same needs under the same eligibility criteria could well lead to different service provision. The aim of the duty to cooperate is to require local authorities to plan in advance when someone expresses a clear intention to move. I think this would be hard to enforce. One of the issues is the discretionary nature of social services provision and the low level of social care funding, compared with the NHS. This tends to lead all local authorities to try to hold off from making any commitments for as long as possible. This then creates uncertainty for people who might want to move. In effect, what you have to do is move and then persuade the local authorities to sort themselves out, which they will probably do, but you have to take all the risk.

Defining community care services

If the system will be organised through eligibility criteria, what services will people be eligible for? Should this be specified in detail? This might limit flexibility and innovation, but if it is only set out very broadly, it does not confer much by way of rights to services. The Commission argues this out and comes down on the side of short and broad: its suggested list is:

- residential accommodation;
- assistance and facilities in the home;
- social work service and support and advice;
- centres or other facilities in the community; and
- social, leisure, communication, education and training activities.

At least, this covers the main points and includes social work. And if someone has needs and the only way they might be met is by one of these, then that confers a right to the service. It also confers a right to a package that might substitute for one of these, if it is not available. Being short and generalised, it can also be put into the legislation, rather than a regulation which can be salami-sliced away. So the proposal is:

- community care services should be defined by a short and broad list of services
- the list of community care services should be set out on the face of our future adult social care statute

The Commission goes on to discuss whether community care services should be left undefined. This might increase flexibility and innovation, but would leave local authorities unable to argue with NHS or housing bodies that sought to say that local authorities should pay for housing of health services. It would also mean that members of the public, councillors or the managers of agencies are not clear about what sort of thing should be available.

The next bit looks at whether there should be a list of client groups in the legislation and how this can be structured. It is difficult to define particular categories legally, without restricting eligibility at quite a high level. An alternative might be referring to people who have a current need for services, have had a need in the past and/or need services to prevent a need arising; but this might be too vague. Similarly, carers’ services are hard to define. On the other hand, it looks at shared living schemes, what used to be called adult placements. This is where people live other people’s homes, rather like fostering for people who are frail or have disabilities. It’s not clear whether these are residential accommodation or not, but they may have to be subsidised in adult social care, to get carers to provide the facilities. In the end, the Commission says:

- we do not propose that our future adult social care statute should include a central definition of a disabled person or service user.
- carers’ services should remain undefined
- allow for regulations to be issued that are capable of defining Shared Lives schemes as being non-residential services in all cases

Maintaining the distinction between healthcare and social care is important so that the political commitment to a free health service can be retained. Similarly, adult social care provides a lot of accommodation in order to provide care, but it is excluded from providing accommodation that should be provided under other legislation. So the proposal is to retain the legal prohibition on social services providing healthcare services, if there is a duty under the NHS or housing legislation:

- local authorities would be prohibited from:
providing residential accommodation, if this is authorised or required to be provided under the NHS Acts 2006 any non-residential services that are required to be provided under the NHS Acts 2006; and
nursing care which is required to be provided by a registered nurse.
- social services authorities should continue to be prohibited from providing ordinary housing and connected services, if these services are authorised or required to be provided by or under other legislation.

Immigration law prevents adult social care from provide its usual services to destitute people if they are asylum seekers and refugees. Since this is government policy outside the scope of this review, the Commission simply asks for views on the likely consequences of continuing with this position.

Delivery of services

Since the Commission is moving towards a process view of adult social care legislation, that is, the law says how the services should be provided, rather than what should be provided to whom, it points out that care plans are a crucial part of this process. This is because it is the care plan rather than the assessment that says precisely what the local authority will provide. Even if this is then covered by a direct payment, this step is still a crucial part of the process, even if it needs to changed somewhat. The Commission therefore proposes flexible provision for adult social care services to say, in effect, ‘this is what we are going to provide’; this can then be disputed in law if the service user disagrees. The proposal is:

- a duty on local authorities to produce a care plan for people who have assessed eligible needs. This would be supported by a duty placed on the Secretary of State and Welsh Ministers to make regulations concerning the form and content that the care plan must take.

There is then an issue about accommodation. People who get direct payments, increasingly intended to be the majority, can choose and manage their own services. However, if they are assessed as needing residential care, the local authority has to manage the service, although the service user has the right to choose where they go and pay more than the local authority will pay if that is what the user prefers. Government policy is against simply giving people direct payments and allowing them to organise their own accommodation. This seems contrary to the direction of personalisation policy. The government makes the distinction because, they say, they want to retain the focus of direct payments supporting home care. The Commission asks for views about this.

I have my doubts about what the government is saying. I can understand one aspect of it, because back in the 1980s, when social security payments were available for residential care but not for home care, this encouraged people contrary to community care policy, to switch into residential care, and the costs took off like a rocket. Not leaving local authorities in control of residential care placements means that people might not put up with the hassle of organising home care, and go for the easy option of what would in effect be a subsidy of residential care. In turn, this would be an incentive for a burgeoning of residential care and probably care home operators in a more generous market increasing their charges. I suspect the government’s policy is less about avoiding a perverse incentive to people to switch from home care into residential care, but more that it would release pent-up demand, increase overall costs and reduce the financial incentives for people to set up private sector community care services.

The Commission seems to think that it would be more logical if direct payments also provided for residential care. But since the government will not do this, it proposes that the present ministerial direction that people should have the choice of their accommodation if they are assessed as needing it, should be written into statute. On the other hand, direct payments are made subject to various limitations, which might alter from time to time, so it proposes keeping the flexibility of the current regulation approach, rather than enshrining the limitations in law:

- the choice of accommodation directions should be placed in statute law and that the additional payments regulations should be retained in secondary legislation
- direct payment provisions should be retained in their existing form

Requirements on charging vary between England and Wales, and policy on charging may well change, so the Commission proposes leaving it to ministers to decide on charging arrangements:

- a regulation-making power to enable the Secretary of State or Welsh Ministers to require or authorise local authorities to charge for residential and non-residential services
- the existing regulation-making power, which enables certain community care services to be provided free of charge, should be retained. All services that must be provided for free should be listed in the regulations

Joint working

Aside from the limitations which mean that the NHS is divided from adult social care, there are various other transitional problems. Where children, particularly those with disabilities, transfer to from children’s to adult social care, the proposal is to make a clear dividing line at 18, but allow flexibility to facilitate transfer:

- future adult social care statute should apply to those aged 18 and above, and the Children Act 1989 (and the CSDPA 1970) should apply to those aged 17 and below
- local authorities should have a power to assess 16 and 17 year olds under our proposed adult social care statute and young people aged 16 and 17 (and their  parents on their behalf) would have a right to request such an assessment

Then, the Commission has a problem that if adult social care only applies to people over 18, young carers cannot be provided for under this legislation, but they currently have a right to receive assessments and services. Therefore, the Commission proposes:

- the [relevant legislation]  should be retained and amended so that they only apply to young carers
- parent carers should continue to be eligible for a carer’s assessment under the [relevant legislation]… [w]here a young person aged 16 and 17 is being assessed under our proposed adult social care statute, parent carers should also be given a carer’s assessment under this statute

Adult carers and parent carers whose children were assessed under the transitional arrangements would then be provided for in the adult social care legislation. This seems cumbersome to me; but there might be advantages in have separate legislation that referred to young carers, because it might get them a better deal than the rather poor services that most carers get if they are adults.

The well-being power

I have commented before in this blog on the well-being power that local authorities have to do anything that is for the general well-being of their communities. The Commission asks whether we should get rid of specific adult social care legislation and simply use this power, or, for a less total change, add a well-being responsibility into the adult social care legislation; they’ve had something similar in Scotland for many years. My view in principle is that greater autonomy to local government to do what it wants would be usefully more European in its approach – most local government in Europe has more power to do things that it thinks are beneficial, but they also have more independent income, whereas most British government funding is highly centralised. How it would work here, then is problematic however, desirable it would be.

The Commission points out, however, that in law the well-being power is a fill-in where it’s not clear that legal powers to do something desirable exist. It could be used to provide social care, particularly if it were off-the-wall, something a bit unusual that it wasn’t clear is covered by the present legislation. However, there are limits: the expenditure has to be proportionate to the gain, the local council can’t do anything that Parliament has forbidden or restricted in some way and the aim is not to regulate a well-established service. So you cannot enforce social care provision using a well-being power, although it does give you discretion to do interesting things that the law has not thought of. If you linked it to community care assessments, you could set up the system for assessment, and also require the assessment to show that the outcome produced well-being. Would that be for the community in general (the aim of the present well-being power) or for individuals? The Commission asks for views about this.

I’m for well-being as one of the statutory principles, because I think there should be a test of how good a service is to a community in general, and how good it is for individuals.

Delayed discharges

The delayed discharges legislation allows a hospital so say they’re ready to discharge someone from one of their beds, and local authorities have to scurry round and get them out, or be fined for failing to do so. Not in Wales, the Commission points out (which raises the question of why it is so necessary in England). And, I would add, not in palliative care, because it doesn’t apply to independent hospices; our experience at St Christopher’s is that there are signs that local authorities are getting to the point where this makes a difference. They and the DH started off by saying it wouldn’t, and this was generally true, and I believe is still generally true. But with things as tough as they’re getting, any port in a storm, leave the hospices to suffer.

The Commission proposes leaving it as it is; I think hospices should be arguing fro it to be applied to all in-patient units, because it is unfair for a benefit (if it is a benefit) to be conferred on someone just because of the type of unit they are in, especially when the government says it wants to cooperate with the voluntary sector.

Prisons

There has been a lot of consideration of palliative care in prisons, and there have also been moves to get the NHS involved in prison health services, to improve the quality. Prisoners are eligible for community care assessments, and more will need them because the prison population is getting elderly. We should also be doing better for mentally ill people and people with learning disabilities; a high proportion of the prison population have such problems. Rather than needing punishment because they’re bad boys and girls, a lot need help with their problems, either as well as or instead of prison.

So, who should provide adult social care for prisoners and are special arrangements needed? Prison governors have a common law duty of care and duties under the Disability Discrimination Act to make reasonable adjustments for disabled prisoners. Currently, adult social care legislation and regulation does not deal with prisoners specifically. They would get an assessment and services (with certain exceptions) from the local council in the area they were living in before they went into prison. The Commission thinks that prisoners are not excluded from adult social care, but no efforts have been made to consider their position, and the Commission asks for comments about whether they should be included in or excluded from the adult social care legislation. It’s not clear that prisoners are equal under the law, because they mostly seem not to get assessments and there are practical difficulties in getting them services.

My view is that they should clearly be given the same rights as everyone else. But more is needed, because they will not get this unless we specifically provide for their special needs. This is also important, because healthcare comes from the NHS and usually this would involve some elements of adult social care. We should really be thinking seriously about this.

S117 Mental Health Act

I’ve tried to avoid getting into specific legal stuff in this post, but there’s no choice here. S117 makes provision for after-care planning where someone has been held compulsorily under the Mental Health Act 1983. It’s a ‘free-standing’ duty, separate from the normal provisions for adult social care: so should it be made to fit in? Legal decisions mean that it is not a gateway to other services, so it does not give the legal power to choice of accommodation, as (see above) service users under the National Assistance Act have. There is also no power to charge for residential care, so mental health patients also cannot top-up accommodation charges to get what they want (you can’t top-up what you’re not getting in the first place, unless it’s a payment direct to the care home instead of to the local authority – perhaps). Furthermore, the arrangements for which local council is responsible are different under the mental health legislation from the other legislation. It’s a mess, and the Commission proposes:

- choice of accommodation directions, and
- additional payments regulations should cover residential accommodation provided under section 117 of the Mental Health Act 1983; also
- the concept of ordinary residence should be extended to apply to after-care services

Another difficult part of the mess is that it’s not clear whether health care and social care authorities have to provide their specialist area of after-care or all of it – which does what? Also it’s not clear that they can commission services, even though they are required to cooperate with voluntary organisations. To sort this out, the Commission proposes:

- section 117 should be amended to clarify that:

1. the duty falls on health authorities to provide health care after-care, and on social services authorities to provide social care aftercare.
2. health and social services authorities can commission after-care services

– If the section 117 duty is split should the termination of the duty also be split so that, for example, social care after-care ceases when the social services authority is satisfied that the person no longer needs social care after-care; or should both authorities be involved in the decision?

The Commission also asks for views on whether the free-standing duty should be merged into the main legislation. I take, as I have throughout this post, a rights view of that: I think all service user groups would all benefit from a duty to plan after-care; this might also help with delayed discharges. Go for it, I say.

Duty to cooperate: I agree it should be clearer

Some legislation makes it a duty to cooperate to provide services. Usually it is clear who has the duty to cooperate and to lead a particular aspect of it. But it often does not go very wide (usually not mentioning all providers, in particular – thinking palliative care again – voluntary sector providers, who may be the main players) and it often gives a duty to cooperate without requiring potential cooperators (I’m thinking foundation trusts but no doubt there are others) also to cooperate; they can say ‘we’re not playing ball’.

To deal with all this, the Commission proposes:

- a general duty on each social services authority to make arrangements to promote co-operation between the local authority and specified relevant organisations.
- a local authority can request certain authorities to assist in a number of circumstances, including when an assessment of a service user or carer is taking place and in providing services to a service user or a carer. In such cases, the requested authority would be under a duty to give due consideration to the request.

Safeguarding adults at risk

What should the law do about adult safeguarding? Some professionals involved want to have legislation, like they have in Scotland, that gives them powers like those in child safeguarding. I worry that this is about giving adult social care departments some macho responsibilities that give directors power and push within the Council for better resources. The Commission looks at powers to investigate and take coercive action. The problem with investigative powers is: what kind? Would it be like police powers, or something different? How would it interact with police powers? – an issue that children’s social care has faced. And how would coercion interact with Mental Health Act, Mental Capacity Act and human rights responsibilities and powers. What should be done about the controversial power to compel people who are not looking after themselves (S 47, National Assistance Act) – this offends against all sorts of modern legal arrangements. And how should we define someone who is vulnerable?  – currently this refers to services that they might receive, rather than referring to their needs. The Commission explores a whole range of definitions and looks at whether local adult safeguarding boards should be included in the legislation to formalise the administrative structure for cooperation.

Local authorities have responsibilities to look after people’s property (especially in my experience their house and pets) when they are admitted to residential accommodation or hospital; should this continue, or go to a body like the public guardian. The issue here is, to me, the most efficient organisation: the NHS is not a general purpose body and the public guardian is not local.

Not an easy one, and the Commission proposes:

- a duty on local authorities to make, or cause to be made, such enquiries as it considers necessary where it has reasonable cause to suspect that a person appears to be an adult at risk and consider whether there is a need to provide services or take any other action within its powers in order to safeguard that person from harm
- the term vulnerable adult should be replaced by adult at risk for the purposes of the duty to make enquiries,
- an adult at risk should be defined in our statute as anyone with social care needs who is or may be at risk of significant harm
- if the Government in England or the Welsh Assembly Government decides to introduce new compulsory or emergency powers to safeguard adults from abuse and neglect then these will be included
- the enhanced duty to co-operate, proposed above, should include specific provision to promote co-operation between the organisations in safeguarding adults from abuse and neglect
– No Secrets [the English policy] and In Safe Hands [the Welsh policy], or their successors, are linked clearly to a local authority’s statutory functions to safeguard adults from abuse and neglect
- section 47 of the National Assistance Act 1948 should be repealed
- a local authority should continue to be under a duty to prevent the loss or damage of a person’s property when they have been admitted to hospital or provided with residential accommodation

Strategic planning

The legislation contains various arrangements for strategic planning. This includes the register of disabled people, which is supposed to help planning. But you do not have to register, and you can get most services even if you are not registered because there are specific administrative arrangements for them. Therefore, it no longer really helps planning. On strategic planning generally, there are NHS powers for this purpose, and local councils have wider responsibilities to plan all sorts of things. The Commission does not think that there is anything to be gained by adding legislation on specifically adult social care strategic plans. However, providing information is a different matter; citizens should be entitled to appropriate information in a complex system.

In addition to not proposing any specific strategic planning duties or powers, the Commission therefore proposes:

- the disabled persons register should be abolished
- a duty on a local social services authority to provide information about services available in the local area.

That’s it: do have a look and write in to comment; of course you can comment to this blog, but this is your chance to talk to a very influential official body that could be making arrangements that will be here for our lifetimes and beyond.

The website again: http://www.lawcom.gov.uk/docs/cp192.pdf

This post is an evaluation of YouTube vieos on palliative care and palliative care social work. It briefly tells you how to find YouTube, assuming that there will be some of my readers who have never done that. There is then some comment on the top videos the week I did these searches, and this is followed by some overall comment, which you could sum up as ‘could do better’.

Finally there a sort of appendix which tells you how to use the YouTube video viewer, again assuming I might have some readers who have never used one of these things.

People who don’t use YouTube probably just know it as that controversial site that teenagers are supposed to look at to find unsuitable videos of unknown rock bands, which then shoot to popularity, or films uploaded by oppressed groups in countries who don’t have much access to the internet.

In fact there is a very wide range of material uploaded, including stuff on medicine and social work, and a lot of members of the public might well look there for information about palliative care, and might be more used to visual presentations than reading documents or leaflets. Some alive organisations have obviously realised that, because there are a lot of ‘what is palliative care?’ type presentations. Obviously there aren’t any alive organisations in palliative care social work, because I didn’t find much about that.

By the way, St Christopher’s does not allow staff or me to view YouTube at work – this is to stop us wasting our time and Hospice resources watching rock videos at work. So I had to do this at home. You might find your workplace does the same.

Using YouTube

If you’ve never used YouTube, it’s a simple process. Search on your browser for the site. As with a lot of internet sites, it’s about being up to the minute, so it shows you a list of recently uploaded stuff. If you use the YouTube search engine to search the site, you simply put in “palliative care” or any topic you fancy, and it comes up with the most recently uploaded stuff with that computer tag. When I did this for “palliative care” this week I’ve noted the first ten things I got; there were only three for “palliative care” and “social work”. It would change over time, although my experience is that it hasn’t changed all that much over several weeks; palliative care obviously isn’t the hot topic among the tuberati.

Palliative care search comes first, then “palliative care” “social work”.

The Palliative Care search

First up came a German film that looked very hospital, but I couldn’t understand it, so I’ve left that one out.

Student Volunteers in Palliative Care in Kerala

http://www.youtube.com/watch?v=gfdUKcH-ZPg

This is an Indian man talking briefly about how wonderful it is to volunteer in palliative care in Kerala, India. It’s not clear what they do, how they got involved or anything practically useful, so it’s a bit of a pointless puff for volunteering in principle.

Cancer and Palliative Care Video.mp4

http://www.youtube.com/watch?v=KSVljzqeKBA

A UK video showing GPs how to find things about palliative care on the internet; it shows you how to click on various sites. Boring presentation but useful, I learned some things from it.

Palliative Care: What is it and who is it for?

http://www.youtube.com/watch?v=ttW8pxF__g4

This is an American film, presenting palliative care as something that hospitals do, a medical treatment for pain and other symptom relief done in hospitals alongside curative treatment; it does mention social workers, but all the speakers are doctors, even the patient experience. There’s a mixture of people talking to camera and pretty pictures.

Pain and Palliative Care: What the Future Holds

http://www.youtube.com/watch?v=Ai-MbsANxHY

A film of an American lecture from a university somewhere (they tell you the initials of the University at the beginning, obviously the rest of the world will know what it is) by Katherine Foley, an eminent American palliative care physician. It was obviously such an important lecture that she had a hair styling for the occasion: it doesn’t move. Neither does she, much, she was obviously told to stay in view of the camera. She reviews the progress of palliative care and has an international focus. You see the PowerPoints filmed as she talks, which are not easy to see in this format and some of them you can’t read. The presentation is very comprehensive, but very professional i.e. boring. It goes on for nearly an hour, so I haven’t watched the whole thing, and therefore I don’t know if it mentions social work. She does talk about palliative care as a human right.

Canadian Virtual Hospice Palliative Care Video

http://www.youtube.com/watch?v=ZWLoQkJD0WA

A 7 minute film about a Canadian information website, introduced by Chochinov, a well-known beardy in supportive care; it describes the site – you can submit questions for an expert to answer, and it has discussion bulletin boards and the usual information. There is an affecting account by the adult daughter of a cancer patient. Nice film, lots of variety.

Right to Relief: Palliative Care in India

http://www.youtube.com/watch?v=0_FK-5aMkEo

A 4-minute Human Rights Watch video complaining about how the Indian government and most of Indian medicine does not make pain relief through cheap morphine available. Good photos and video and presents a range of settings, including home care, so it gives a picture of what is probably quite a good Indian palliative care service. Presents the international human rights issue of availability of morphine succinctly and caringly.

What Is Palliative Care? – Dr. John Mulder

http://www.youtube.com/watch?v=QIF99iKnVcU

This American (?) doctor for a private sector health service describes palliative care as a consultative service for the longterm quality of life consequences of being treated for a life-limiting illness. He’s interviewed by an extremely thin, blonde, glossy woman in red, and in the 2-and-a-half minutes it does mention bringing in social workers. Talking heads stuff, presumably to advertise their services.

What is Palliative Care?

http://www.youtube.com/watch?v=Uy5PDoPfmWQ

Brief film, Diane E. Meier, Director of the American Center to Advance Palliative Care, talking about the kind of patients who might be helped by palliative care. Talking head stuff again. Going down the list further, there are several short films from the Center of the same sort and format, all about the American system as though the rest of the world does not exist, so it makes it peculiarly irrelevant.

The social work and palliative care search

Then I searched for “palliative care” and “social work”. This is what I got:

Social Work and Health Palliative Care – Care Accolades 2009 finalist

This is a one and a half minute film about Angus social work department (they’re not called social services or social care in Scotland, but that doesn’t mean that everyone involved are social workers). They obviously nearly won the prize for this competition for good services. The scheme is about generalist palliative care: it refers to a two-day training the trainers project to give training to it-wasn’t-clear-who, and they gave training to 122 (count them) front-line carers, who then said they were much more confident with advance care planning and talking about death and dying, presumably either with people in care homes or receiving community care services, it’s not clear. Professional film, but not really much information, and as it’s a prize competition, it’s not really a critical discussion of the issues.

Hospice San Miguel

http://www.youtube.com/watch?v=JFWNL9z8_wk

A five and a half minute ‘promo trailer’ for this hospice – it turns out it’s in Mexico, but you wait a long time to find that out, and it rather feels as though it’s an American city with a lot of Latino/a people. They would clearly like to influence American palliative care with their experience. Don’t be put off by the start, which is in Spanish, because most of it’s in English and there are subtitles when people speak Spanish.

It seems to be an American neo-colonialist project run by Americans for Mexican people (although the volunteer coordinator of the bereavement service may be British) and the comparisons made are with the American medicare system for funding hospice care; they claim they are going to show America how to be more flexible. It seems this is just about not having government interference. It’s not clear whether there is an in-patient unit or whether it’s a community service only, since they don’t actually say what they do, just tell you how wonderful it is. There is some patient and carer ‘testimonial’. There is a strong focus on bereavement groups and family work, which is achieved by getting social workers and volunteers in early (more or less the same thing as far as the speaker is concerned – it’s not clear who most of the speakers are, but they present as very do-gooding). The message of the film is mainly: ‘don’t be frightened of hospices, come early for care’. We can all appreciate the need for this, and it is well-filmed and produced.

End of Life Care Panel (10/30/09)

http://www.youtube.com/watch?v=t7g1WO68KYE

This is a panel of four people, one of whom is a social worker, answering questions; she talks well from experience about working with people with a different ethnic background. It looks as though it’s a public event by the Commonwealth Club of California explaining palliative care to the masses (well, poorly informed professionals really, I would guess; I suppose they are the masses). It’s led off by an extremely boring (male) medical professor with a grating voice and a very long job title saying how other medical specialities need palliative care. But it (and he) get better; there’s a very warm and practical nurse, a glossy, severe lawyer and a frizzy social worker. Most of the discussion is about assisted dying and advance care planning. It’s very long, more than an hour, and a very boring straight filming, with the occasional mid-shot of a panel sitting crammed unmoving behind a small table. I haven’t watched it all.

The Evaluation

There is some material on palliative care on YouTube, but not a lot and it’s mainly talking heads or educational. It’s mainly American, so there’s an opportunity for British organisations or individuals or people in other countries to make a good impact. In fact British viewers are likely to be seriously misinformed by the American stuff. And the American stuff is very American; there’s no attempt at international coverage in the American material, except in the lecture by Katherine Foley.

However, her lecture and the panel discussion from California illustrate the other problem with academic material on YouTube, they’re very long, very static and very boring. I cannot imagine anyone being prepared to sit through the whole thing. However, there is useful material in this stuff, but it should be carefully edited. At least cut out the doctor moderator with the two-minute job title (I’m exaggerating but not by much). Academic presentation like this also needs to be interspersed with appropriate illustration. The lecture had very interesting material, but it needed to be animated and shown properly. This requires work, guys. Not just slapping it on the internet.

You can put up with talking heads for a minute or two but not much more than that. Come on, we’ve seen the BBC or CNN, we know what it should be like.

Another weakness of some of the material is that it is promotional and it really does not make clear what it is promoting, so you don’t get to know what the volunteers do, just that (for a couple of minutes – it was so repetitive I almost switched off but I couldn’t believe he could say so little again and again) it’s wonderful that it’s there. It’s even easier to switch onto the next thing on the internet than it is with a television set or radio, so your material really has to be focused.

On the other hand, some of the short films which wanted to make just one point with interesting film or photos and lots of variety are really informative. Going for that makes a good impact. Less is more.

The new pot of multicoloured pens on my desk betokens the fact that the Chief Executive has sent me to one of those sponsored conferences, the type where there are lots of people selling things that think giving you a pen, or (latest fad) a canvas climate-friendly bag, will get you to buy their wares. On this occasion the main sponsor was Unipart. You may think this is a vaguely familiar company name: no, not ‘Hitler has only got a Unipart’, but the car parts company that was spun off from the failing British Leyland in the 1980s. The guy from the company had a good line: ‘Rover is over’, with a missing letter in the doctored logo. Anyway, this lot have redefined themselves as a health and social care management consultancy: transferable knowledge for transplant surgery I suppose.

Actually the Unipart management consultant was the best speaker among the drones in the first half. Although I do wonder about a management technique that tells you that staff engagement is so important, but that managers need to ‘drive through’ change (although perhaps this analogy was a leftover from his car industry past). I’m afraid I’m a Toyota staff member: my accelerator’s bust. Another example of businessification: why is it assumed that some failed car company spinoff (I know Unipart was thought to be the unipart that was successful about British Leyland) has management skills in health and social care? Personally, I’d have a lot more confidence in less industry experience and more health and social care experience.

Mount Fuji at sunrise – we’re still in Japan.

The conference in Japan was – their choice of subject – on holism; I was never very sure why this was an issue for them; however, it is a current interest of mine.

I think the view of palliative care holism that it is about total pain and bringing together physical, psychosocial and spiritual issues is an outdated concept. I ask myself: what does it mean to be whole, in health and social care services? It is not just holistic medicine either, that is just looking beyond the immediate symptoms you are dealing with.

What it is about is the conjunction between health and social care; the Department of Health ‘healthandsocial’ which we have all been taught to say as a slogan of togetherness, but nobody really does anything about, especially in healthcare because they think that only healthcare matters, and that everything else ought to contribute to it, particularly social care..

Anyone who’s actually worked in social care knows, though, that it is part of a whole gamut of public services: housing, social security, justice, transport, leisure, education etc etc. Many things we do as part of social care for a frail older person involves many of these: adequate housing, adequate and correct social security, feeling safe, being able to get around in spite of frailty, being able to live some aspects of life that you enjoy, being able to develop yourself. Healthcare is just the instrument of being able to live all these social aspects of life. When you have an illness, you want to be cured so that you can get on with your life.

So the question you have to ask when thinking about holism is: what does it mean to be a human being, a whole person. And that certainly means being healthy, but it also means all those other aspects of social well-being, without which being healthy doesn’t matter much. That is one of the reasons why people are saying they would rather be helped to die than kept alive but with no quality of life. What does being healthy mean as part of being a whole human being? Being maintained alive but without human opportunity is being questioned, so we need to think about and try to achieve being wholly human up to the end of life. While that means more than healthcare, we haven’t yet done enough to say what our services need to do to achieve being wholly human. Slogans like ‘dignity’ and ‘respect’ do not achieve this, because again they are simply about being treated as human within health and social care, not being human in our whole lives.