Today’s explosion from the wards is about a PCT that does its own assessments. There’s a one-month wait, which is one of the reasons why the government has an arrangement for fast-track for palliative care patients, who will probably die before they get assessed at the usual pace. This slow pace is not altogether wrong, because many continuing care assessments will apply for years and are for people with long-term conditions who can accept a slower pace of assessment. In this case, we have a patient in the hospice that the PCT have decided is not going to die soon enough for fast-track – the Greater London continuing care people are trying to enforce a strict ‘we only fast-track if they’re going home to die within the next 48 hours’. This is completely contrary to the national framework document, which says:

45. Occasionally, individuals with a rapidly deteriorating condition, which may be entering a terminal phase, will require “fast-tracking” for immediate provision of NHS Continuing Healthcare.

This does not say imminently dying in 48 hours. In the meantime, social services will pay if she can’t, so refer it to them. However, the social services line is that they won’t consider for funding unless the continuing care assessment has been made, not unreasonably, since we were told that people should be assessed for continuing care first and presumably they were told this too. Round the circle again, and in the meantime the patient is blocking a bed in the hospice that someone else might need, to which the delayed discharge legislation does not apply, and it’s not soical serviecs fault anyway.

Pics of the rebuilding at St Christopher’s, now under way, in solidarity with all colleagues working through a difficult time, to make things better in the future:
Our lovely gravel paths have been made concrete for heavy machinery

Summoned to the ward managers’ meeting to discuss continuing care applications again. This time one of our London PCTs has rejected a form as the wrong one, and when it faxed the right one it was the same form but with their logo on it.

Another wheeze, which the Greater London continuing care leads have apparently signed up to, is that only people being sent home to die within the next 48 hours should be allowed an assessment on the fast track form (in Greater London 7 pages, national 1 page; as opposed to the full glory of the 27 pages of the usual Greater London ‘delay by assessment’ form). This is a serious diminution of the quality of care for palliative care patients. The law has not changed, but under the previous system, virtually all palliative care patients (ie people who are dying) received the predecessor to fast track. It is also directly contrary to the National Framework document, which says:

45. Occasionally, individuals with a rapidly deteriorating condition, which may be entering a terminal phase, will require “fast-tracking” for immediate provision of NHS Continuing Healthcare because they need an urgent package of care. 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. This may be supported by a prognosis if available, but strict time limits are not relevant for end-of life cases and should not be imposed: it is the responsibility of the assessor to make a decision based on the relevant facts of the case. If possible and appropriate, the initial fast-tracking decision should be followed by a full assessment of need. Careful decision making is essential, to avoid undue distress that might result from a person moving in and out of NHS Continuing Healthcare eligibility within a very short period of time.

Where does this say ‘imminently dying’ or ‘48 hours’? Does it not say no time limits should be applied? Does it not say ‘rapidly deteriorating’ and ‘may be entering a terminal phase’? Fortunately, most of our continuing care people are not following this obnoxious policy. I can only advise relatives to appeal, and if necessary go to the Ombudsman or write to their MP.

The full Framework document:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_076288

To see my previous experiences of continuing care, click the link at the head of the blog.

Pics of the rebuilding at St Christopher’s, now under way, in solidarity with all colleagues working through a difficult time, to make things better in the future:
Revealed

The government published its welfare reform public consultation; they’re calling it a green paper as well, presumably that means the same thing. It is called: No one written off: reforming welfare to reward responsibility. This follows the government approach to welfare, which is increasingly communitarian, that is, rights go with responsibility; you don’t get anything unless you give something. In this case, you don’t get pensions or social security unless you work for them. This is hitched up to a quotation from Beveridge, the man who wrote the original green paper during the war (except that they called it a report then) on the welfare state. He said government and the individual should share responsibility for social security. While this is true, we have always understood this to mean that the government would be there to fall back on if you landed in difficulty. Both medical and social ethics say you should be entitled to the means of life because you’re a human being, we’re all human beings and we’re all in this world together.

Why is this important for palliative care? Social workers know that feeling secure in your home and a reasonable income, no matter what disaster may befall is an important part of being able to struggle on against adversity. The signs for the health service are there. The government wants to sweep up government funding streams together, so that for disabled people social care, housing support, employment support, equipment and adaptations to your house are all connected to one another. This sounds very sensible and joined up, until you wonder what happens if, say, the employment support people cannot make their objective of getting you into work because you are feeling insecure about your health and the social care provided to your sick wife. I just wonder whether failure to keep employed is going to lead to all your help being insecure, and what this will mean to families trying to struggle on with multiple problems, including a sick or dying family member. I can just imagine some private sector employment ‘adviser’ with a target backed up with financial penalties for non achievement, saying: ‘So your wife is dying: what’s that to do with you getting back to work?’

As it is, the idea to make all funding streams connect up is fine: but what if the people managing the funding streams don’t agree with each other? And it is said that they are going to experiment with NHS funding streams to connect with that. So perhaps in future, your wife will not get her continuing care support to go home, if it means you are going to stay off work to help her. At the very least, I would want to hear about some very firm legislation about people’s rights not being affected by how their families behave. And I’d want to see how much consultation is going to be needed between these different funding streams before they are all coordinated. Otherwise, we’ll get massive six-monthly meetings taking a year to make decisions, or ‘we’re not going to help you because they’ve decided they’re not going to give you the benefit they manage,’ Don’t tell me it can’t happen, my daily penance is continuing care.

Department of Work and Pensions (2008) No one written off: reforming welfare to reward responsibility: Public Consultation. (Cm 7363) London: TSO http://www.dwp.gov.uk/welfarereform/noonewrittenoff/noonewrittenoff-complete.pdf

I do my paper today (Opole conference) and get carted off for an interview with Opole radio on how the UK arranges for care for older people, in particular whether they have to pay. Answer yes, and they don’t like it because it runs down their capital and they sometimes have to sell their house, or at least they fear that. It almost makes older people refugees from the community in which they have lived for so many years. I also think that the UK system sees people as individuals paying for individual care, whereas much of the reaction is actually because people see themselves as part of families, and they see it as the family’s house and the family money. However, I don’t say this because I think this is too complicated for a translated interview on Polish radio.

Pic of the pavilion lawn, St Christopher's Hospice, last year

I’m being the Hospice’s Caldicott guardian today at a meeting with a local hospital. The email comes from the ‘PA to KGC and Risk’. I had to look to see what this is: ‘Knowledge, Governance and Communications’; fancy having a job title like that with Risk added to it. You could turn this round and become the director of Grack. We’re hoping to come to an agreement to share information between the hospice and one of our local hospitals.

You don’t know what a Caldicott guardian is? This is serious stuff. Basically, I’m supposed to speak up for confidentiality and privacy of the Hospice’s patients and clients in the Hospice’s management forums. Health and social care agencies are all supposed to have one, including social services departments. When I was given this extra job role and registered with the guy who keeps the national list, I was welcomed to the Caldicott community (but only by email, so it wasn’t a socially exciting welcome, not even a peck on the cheek). It seems that’s about the extent of the community.

However, if you want one, too, you can go to the Department of Health Caldicott website: http://www.dh.gov.uk/en/Managingyourorganisation/Informationpolicy/Patientconfidentialityandcaldicottguardians/DH_4100563. this contains a manual of good practice, largely a list of other websites, and quite a nice paper of examples of good practice.

Like some of the social services authorities round St Christopher’s, Devon County Council is separating its service-fixing function from its community care assessment. This looks efficient, because from the Council’s point of view, they can deal with the easy cases by bureaucracy. However, from the service user’s point of view it means that once an assessment is made, they lose continuity of service from a care manager. And from an end-of-life care service point of view, there’s no care manager with a continuous knowledge of what’s happened to a patient. So further along the line, the service user does not get the benefits that come from continuous service. And it goes against the research, which says that the ‘travel agent’ model of care management, where the care manager just fixes the services, does not work as well as the ‘travel companion’ model, where they stay with the service user throughout the process (Rapp, C. A. and Roscha, R. J. (2004) The principles of effective case management of mental health services. Psychiatric Rehabilitation Journal 27(4): 319-33). Never mind the research, this is common sense: it just doesn’t feel caring if you get a succession of people dealing with you instead of a continuous involvement.

Pics of memorials in St Nick’s curchyard, Sutton

Adass (the Association of Directors of Adult Social Services) is complaining that the National Framework of last year on continuing care is not being implemented consistently (Directors fear framework fudge, Community Care 17th April 2008: 5). Not surprisingly, as they allowed local deviation from their National Framework: how is it then a national framework?

As a result, Bureaucracy Central (BC), my name for the Greater London Strategic Health Authority, got its continuing care leads (bureaucrats in charge are called leads, nowadays, in recognition of how the managers collar them and keep them on a string) together to invent their own DST (‘decision support tool’ in Department of Health-speak, I call it the ‘delay support tool’). This has 27 wonderful pages, although one of these is the record of their decision, as against 16 for the national form. Then there is the Greater London fast-track form, or ‘hold-back form’, as it should be properly called, which in London has 7 pages as against the national 1 page (that’s not a typing error, I said ‘one page’ from the Department of Health – but Greater London BC can do better). The question: is BC getting 7 times more effective decision-making from their hold-back form than the PCTs outside London or just 7 times longer delays?

New tree memorial

Pics of memorials in St Nick’s churchyad, Sutton