You may remember that on 7th April I mentioned the end-of-life care integrated care pilot. Now there is another aspect of this programme, personal health budget pilots, where they are going to try out social care type personal budgets, including the possibility of direct payments in the NHS. Don’t get too hopeful because the DH documents on personal health budgets are very strong on telling people they probably won’t get real money from the NHS (as opposed to social services). They seem to emphasise notional budgets. It’s not clear whether this is because they are taking into account the reality that a lot of people don’t like the idea of managing their own care, or whether they are anxious about losing control of paying out money.

The public information leaflet on personal health budgets is at: http://www.dhcarenetworks.org.uk/_library/Resources/Personalhealthbudgets/292457_Personalhealthbudgets_acc.pdf

The DH has recently announced the personal health budgets pilot sites. Two of these are specifically in end-of-life care only, so presumably they will have a very strong focus on end-of-life care issues: South West Essex and Southwark. Another is for end-of-life care with Asian communities (an example of bidding where your strengths are): Bradford & Airedale Teaching.

A lot of others have mentioned NHS continuing care as the focus of their pilots, logically, since this is directly analogous with local authority community care where personal budgets have been steaming along. This could affect how palliative care teams deal with NHS continuing care in these areas. More positively, it may mean that end-of-life care gets a look in when people are thinking about broader care needs, but don’t bet on it, since they haven’t mentioned end-of-life care specifically.

PCTs mentioning end-of-life care as part of a pilot on NHS continuing care, long-term care groups or a range of services are: Ashton, Leigh & Wigan, Barnet, Camden, Eastern & Coastal Kent, Greenwich Teaching, Havering, Herefordshire, Hull Teaching, Medway, North East Lincolnshire, Nottingham City, Oxfordshire, Redbridge, Richmond & Twickenham, Sheffield and Western Cheshire. Presumably, in these pilots they are going to aim to do something special on personal budgets for a wide range of long-term groups.

You can look at the Department of Health Care Networks website for more information about all sorts of ‘integrated care’, that is health, housing, social care and social security working together. This also leads you to information about personal health budgets (at the bottom of the long list of integrated care topics):

http://www.dhcarenetworks.org.uk/

However, don’t forget that this is an international trend and has been going on in adult social care for some time. A recent SCIE (Social Care Institute for Excellence) report tells you how it’s been going in social care:

Carr, S. (2008) Personalisation: A Rough Guide. London: SCIE.
http://www.scie.org.uk/publications/reports/report20.pdf

and the SCIE website has recently updated its information with several briefings for different groups of professionals on personalisation:

http://www.scie.org.uk/publications/ataglance/ataglance06.asp (this takes you to a summary, scroll down for a clickable list).

If you want real academic information, look at the academic evaluation of individual budgets in the social care field, where you get a very nuanced view of the pluses and minuses, even though it’s been done by all the usual suspects in the DH client researchers list:

Glendinning, C., Challis, D., Fernández, J-L., Jacobs, S., Jones, K., Knapp, M., Manthorpe, J., Moran, N., Netten, A., Stevens, M. and Wilberforce, M. (2009) Evaluation of the Individual Budgets Pilot Programme: Final Report York: Social Policy Research Unit, University of York.

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_089505

From this website, you can also download a DH response to the evaluation. Part of this includes a suggestion that including NHS continuing care in social services independent budget arrangements might improve integration and help to remove barriers. As with the funding issues I’ve been discussing in the social care green paper, we need to remember that such suggestions may take away the right to free NHS care at a fairly generous rate and fold it into the social care discretionary system, with less generous provisions. We saw this happen with social care over the last twenty years. Governments of all stripes have an interest in cutting costs in this way.

Interestingly, one of the healthcare trade unions had the same thought:

Unison (2009) Personal health budgets: 68 pilot sites selected. London: Unison.

http://www.unison.org.uk/healthcare/pages_view.asp?did=8909

They say: UNISON believes that personalised healthcare plans are achievable without the introduction of budgets and that budgets will create a consumer culture in the NHS and may ultimately lead to means-testing… With the use of direct payments there is a danger that patients will be tempted to ‘top-up’ payments for their healthcare with their own cash, potentially leading to two-tier health service.

I take back what I said about the main asset of the latest Solace booklet being its pretty-coloured cover, because there’s a good explanation by Scotland’s Chief Social Work Inspector Alexis Jay, on how their free personal care policy is working. The England government could learn something from this. It is ‘probably the most popular measure put in place by devolved government in Scotland’ and has shifted the balance from residential to community care.

Palliative care social workers still struggling with continuing care could well look north of the border. Certainly it’s worth retiring there if you’re feeling a bit decrepit, just in case.

Free personal care is not problem-free, of course, and you can see the full picture in last year’s report from the Scottish Auditor General:

Audit Scotland (2009) A review of free personal and nursing care Edinburgh: Audit Scotland

http://www.audit-scotland.gov.uk/docs/health/2007/nr_080201_free_personal_care.pdf

Jay, A. (2009) Free personal care. in Bruce, S., Hume, D. and Jay, A. (2009) Creating Positive Outcomes through Social Work Services. London: Guardian Public: 45-9.

A session with medical colleagues about our newly renegotiated arrangements for continuing care applications. Recently, we have talked with our pcts about their application processes for continuing care funding; they claim they are all consistent with the Greater London guidelines and all use the same forms. Part of the reason why this is not so is that they are thinking about outcomes, whereas our nurses and doctors are dealing with the process, and all the pcts have a different procedures, even if (which I think is also not right) their decisions would be the same. The real reason why the system is unsustainable is that the public does not understand why they must must must contribute to local authority community care, but are not not not allowed to contribute to NHS continuing care. Our doctors, like the public also do not understand why the everyday care needs that come from an illness or disability do not get continuing care, whereas an artificial concept ‘the primary health need’ which is not too different from being unable, say, to get up in the morning because of a disability, is the only basis for getting it.

Anyway, with yesterday’s budget all this is not going to continue for long; it will be one of the easy cuts to make in the decade of holding back the public sector. It does seem crazy that because of incompetence and greed in banking, we are going to have to put up with poor and deteriorating services in the public sector for ages, and when that period of retrenchment is over, we are going to get resurent bankers and private sector managers saying that their giant par packets should not be tweaked because they’re mopre important to the economy than being decent with our old people. No banker or manager is worth more than good care for our old and dying people.

While the following Parliamentary answer will not be news to readers of this blog, it does remind us that the government plans to introduce direct payments to the continuing care system next year. If they want to experiment, they could do it for palliative care patients first, many of whom would appreciate the flexibility that direct payments offers.

10 Nov 2008 : Column 826W
Continuing Care: Finance

Jeremy Wright: To ask the Secretary of State for Health when he plans to begin the national pilot programme on primary care trusts making direct payments for people eligible for fully funded continuing care; and if he will make a statement. [231588]

Mr. Bradshaw: As announced in the Next Stage Review, we will launch a pilot programme in 2009 to test personal health budgets, as a way of giving patients greater control over the services they receive and the providers from which they receive services.

As part of the programme, we intend to pilot the use of health care direct payments, where it makes most sense for particular patients in specific circumstances. We intend to bring forward legislation to enable this; subject to parliamentary approval, we will extend the pilot programme to include health care direct payments from 2010.

The rest of the programme will explore models of personal health budget where the budget is held on the patient’s behalf. These are already available to primary care trusts under current legislation, and also offer considerable scope to give patients more choice and control.

Hansard at: http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm081110/text/81110w0013.htm

Association of Palliative Care Social Workers (UK): http://www.helpthehospices.org.uk/NPA/socialworkers/index.asp

Not a terribly useful site, I’m afraid; not all the documents they have produced are on the site; it appears unfinished.

Canadian Hospice Palliative Care Association, Social Worker/Counsellors Interest Group: http://www.chpca.net/interest_groups/social_workers-counsellors.htm

National Association of Social Workers (USA): Web page on end-of-life care: Carehttp://www.socialworkers.org/research/naswResearch/EndofLifeCare/default.asp

National Association of Social Workers (USA): NASW Standards for Social Work Practice in Palliative and End of Life: http://www.socialworkers.org/practice/bereavement/standards/default.asp

These standards are the only published standards of practice for palliative care social workers that I am aware of, and are a good summary of social work roles, albeit in the US context.

National Association of Social Workers (USA): Web-based courses on cancer care-giving, the social worker’s role and end-of-life care, the social worker’s role (members only): http://www.naswwebed.org/

Social Work in Hospice and Palliative Care Network (USA): http://www.swhpn.org/

4th August 2008

In today’s case, I find out that one PCT has decided that not only are they not going to use the National Framework fast-track form (1 page) or the Greater London fast-track form (7 pages) they are not going to do fast-track at all, but instead use their own (8 page) form, called an inter-agency form, left over from the past system. This is allowed in the National Framework, but I wonder why, since it is supposed to set up a system that works the same for everyone; this just means that we, and all the hospitals in the area, have to keep yet another form on file, and our staff have to work out which PCT covers the patient and remember that this is a PCT that doesn’t do what everyone else is doing.

And ‘with respect’ can a community specialist nurse of specialist registrar fill in their from that they haven’t told us about, because a ward manager is…Well, ‘with respect’ is what? The National Framework document says (paragraph 45):

In this case, the “Fast Track Pathway” tool may be used by a senior clinician such as a ward sister, consultant or a GP to outline the reasons for the fast-tracking decision.

I wonder what a ward sister is, other than a ward manager? Checking with a colleague in another hospice, I find that they have experienced this delaying line as well, from different PCTs.