Social care and social work are important in end-of-life care.
Malcolm Payne's blog focuses on developments in social care and social work that affect palliative and end-of-life care. It is part of the information work of St Christopher's Hospice, London.
I thought you might like to know about the new Social Care Framework document that is now published by the National End-of-Life Care Programme, this is not part of DH so it’s not archived.
You can see the document at: http://www.endoflifecareforadults.nhs.uk/news/all/neolcp-publishes-social-care-framework
Comment later
Keeping my head down, I’ve been re-writing St C’s guidance on applying for continuing care, and renewing my acquaintance with the recently-revised practice guidance; it’s a lovely relationship which I shall relinquish with sorrow on my retirement, although the practice framework hasn’t been changed and all of it’s archived: what does that presage? As part of this, I produced a Table comparing community care and continuing care, which constantly confuses my colleagues, and thought readers of the blog might find it useful.
The Table:
Continuing and community care processes compared
| Process | Community care | Continuing care | ||
| Main focus | The patient’s capacity to undertake the everyday tasks of living. | The patient’s ‘primary health need’, that is, healthcare needs are the main reasons for providing care. | ||
| Application | To the local authority (LA) for the ordinary residence of the patient.
People over retirement age: to the older persons team. People under retirement age: to the (younger) disabled persons team. |
To the primary care trust (PCT) contracting with the patient’s general practitioner, usually to the continuing care commissioner.
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| Who applies? | The service user applies, but usually via a referral from a social and health care professional | A health or social care professional applies, and patients cannot make a direct application, but can ask for an assessment. | ||
| Screening | The LA determines the level of need that it will meet under the Fair Access to Care Services criteria. On referral, a care manager decides whether the patient is likely to meet the criteria for a particular level of need defined by FACS that the LA will support. | Screening for continuing care is by completion of a checklist provided in the Continuing Care Practice Guidance. If healthcare professionals involved with the patient’s care judge that a full assessment for continuing care is appropriate, a checklist in not required. | ||
| Assessment | The LA’s care manager makes the assessment, often using an agreed single assessment process adopted by that LA. | A healthcare professional involved in the care of the patient completes a nationally-determined continuing care decision support tool (DST) and/or health needs assessment (HNA) or a fast track tool with care plan. Some PCTs require DSTs and HNAs to be completed by their own staff. | ||
| Urgent assessments | Reasons for urgency and evidence to support them should be explained to the care manager. | A fast-track tool is used where urgent provision of a care package is required. | ||
| Carers assessments | The LA is required by law to complete, separately from the assessment of the patient, an assessment of the needs of any informal carer regularly involved in the care of the patient. | The PCT or any other health and social care professional may refer carers of its patient to the LA for assessment. | ||
| Care planning | The care manager agrees a care plan with service users, setting out the needs identified, the services proposed and the charge for provision. | The assessor, or the continuing care unit of the PCT plans the package of care (procedures vary). | ||
| Panels | Plans may be submitted to a joint panel of experienced social and health care professionals set up by the LA and the PCT for consultation, coordination and advice, so that decisions are consistent and coherent. | |||
| Direct payments | The LA| must offer the opportunity for patients (or their carers) to receive a direct payment or independent budget, which they can use to plan and manage their own care. | Direct payments are not used in the NHS, but experiments on notional budgets are in progress and may spread. | ||
| Commissioning | The care manager or a brokerage unit of the LA commissions and organises services. | The PCT’s manager for continuing care allocates funding. Packages of services may be implemented by PCT staff or other health and social care professionals as agreed when clear funding approval has been given. | ||
| Monitoring of the efficiency of the implementation of the plan | Social and health care professionals involved with the care of the patient monitor how the package of care is working. | |||
| Review of the effectiveness of the implemented plan in meeting the needs identified in the assessment | The multiprofessional team working with the patient reviews the assessment and care plan at agreed intervals. This may lead to revised decisions about commissioning. | |||
| Review periods | Community care is a provision for long-term conditions, so reviews are often six-monthly or annually. | Reviews in continuing care for palliative care patients are often monthly or three-monthly. | ||
The Practice Guidance:
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_115477.pdf
To Bratislava for a lecture at the Comenius University (the geographically challenged may need to know that Bratislava is the capital of Slovakia, which seceded from the Czech republic in the 1990s, after the economic transition of Balkan.eastern European countries). I discovered that Ryanair is calling Bratislava Vienna, which is obviously charging too much for the masochists’ airline to go there; Vienna is three quarters of an hour on the motorway from Bratislava. And since my last visit in 1993, I find Bratislava has created a lovely restoration of its beautiful central European town centre on the Danube. Really worth a visit, if it weren’t for the British stag parties, who even excited the ire of the students.
Th Comenius University has one of the oldest social work courses set up in the region, post-Communism, with a lively group of students (see photo) and committed group of staff (see other photo). There was a lot of interest in bereavement, although many of the younger students could not imagine spending their lives working with dying people. I spent some time with students working with homeless people. In view of the feeling that services and support was really poor that felt pretty soul-destroying too.
The real satisfaction of palliative care social work, I always think, is the good feedback and the feeling that someone really appreciates what you’ve done and is able to move on because of it – not common in a lot of social work.
Meeting some Comenius students in Bratislava
And looking at the new minimal DH website gets me to the total content for management resources:
Promoting business success and improvement through flexibility and partnership, best practice and a culture where staff are encouraged to develop new skills and expand their knowledge.
Frankly I do not want my health service focusing on business success, I want it focusing on effective healthcare. I shall continue to point out the unnecssary businessifcation of the health and social care system.
You’ll be asking what it says about social care; here it is:
The Department of Health works to define policy and guidance for delivering a social care system that provides care equally for all, whilst enabling people to retain their independence, control and dignity.
I’d like to point out that the concept of delivery is fundamentally inconsistent with the concept of care. Think again boys; try renewing your rhetoric.
My Metro this morning has a feature about a woman who had a life-size cardboard cut-out of her husband made to take to the funeral, took it to a friend’s wedding and now has it at home. A new aspect of continuing bonds theory, the idea that people maintain relationships with someone in their lives who has died. Is this a new opportunity for hospice fund-raising departments?
A trip to Teesside University (the geographically challenged will find Middlesbrough on a map in the top right-hand corner of England about equidistant along the coast between Hull and Newcastle, but the local authority so named seems to have disappeared) to work on a project.
I find on arrival that Teesside University is trumpeting the fact that it is the Times Higher Education magazine’s university of the year, an award that I imagine must have put noses out of joint in some sniffier universities down south. Arriving in the evening, I find that the multi-coloured lighting that public buildings go in for nowadays (at what cost to the environment, I ask myself?) suggests that the X-files people should be called out to investigate a giant alien spaceship landed in the middle of a car park wasteland. The following morning, I realise that this prestige building sits in multiple buildings of more prosaic education architecture thrown up over the decades of administrative metamorphosis from technical and teacher training college to university of the year. The campus is, indeed, in its lack of beauty another challenge to the environmentally concerned.
They have been developing social and health care education in end-of-life care and there is a doctor, Edwin Pugh, who has produced an interesting paper, based on his professorial lecture, on achieving a good death (or what trendier sociologists are calling ‘dying well’). From this I am reminded that memento mori are medieval symbolic pictures of skulls and the like to remind us that fleeting and precious life will necessarily lead to death. And that ars moriendi refers to the art of dying well. I do like a bit of Latin in a blog.
Margaret Holloway, who writes the introduction to this paper suggests that we should see end-of-life care as delivering services ‘artfully’.
My grandmother would not have regarded being artful as a compliment; she saw it as deviousness. But I take the point that dealing with the complexities of the dying process in a family requires input from many arts, human and scientific. And the way today’s society is set up does not make it any easier.
The paper: Pugh, E. (2008) Memento Mori: Personal reflections on achieving a good death in today’s society. Middlesbrough: School of Health and Social Care, Teesside University. (Occasional Paper No 1.) available from Maria Morrissey, Project Officer (Enterprise), Senior Management Support Office, Teesside University, Middlesbrough, Tees Valley. TS1 3BA UK.
T: +44 (0)1642 738063; F: +44 (0)1642 384995
And continuing with the articles in the January Palliative Medicine relevant to social work, there’s a thoughtful review of articles about bereavement risk assessment, which gives you a lot of information and ends up by saying that the adult attitudes to grief scale might be involving and helpful where people actually ask for bereavement help, but some more structured instruments should also be researched for use in this kind of situation.
Sensible.
A. Agnew, R. Manktelow, BJ Taylor, and L. Jones
Palliat Med 2010 24: 46-59
Then there’s an article which is more Palliative Medicine, entitled: French general practitioners vary in their attitudes toward treating terminally ill patients. Galaxy-shattering topic and findings, with lots of graphs too.
Mother and child, Tokyo
One of the important holisms we discussed in Japan, because my colleague Dr Debra Swann focused on it, is what it means to be providing palliative care in a general hospital. There are pluses and minuses of course, but one of the striking things, talking to a hospital social worker recently, is the anxiety of some acute medicine colleagues not to want to recognise when someone is dying because of their commitment to doing all they can to provide treatment. Of course, we see this in hospices, in the patient who arrives at the last moment, or who has not really had the chance in hospital or out-patient treatment to work through what their increasingly advanced illness means for their survival and their family.
All the fuss about assisted dying has not helped this; some doctors are beginning to fear that getting people to think about death means that they are going to be accused of trying to kill them. The assisted dying lobby has not yet got the point that most people want the very opposite of assisted dying; they want all possible forms of assistance to live.
Some pics of the new consultation rooms at St Christopher’s – part of my continuing series about the building updating. Our plan is to encourage more patients and carers to use the Anniversary Project open space as a base for coming into the hospice for a range of activties, including consultations with doctors, nurses, welfare officers, social workers and many other professionals. This reduces travel time in crowded London and means that more people can be helped with the same number of staff.
Therefore the environment of the consultation rooms is important. They have three elements: an office element, an examination room element and an interview element, as you can see from these pics of one room:
I’ve been enjoying the latest edition of Eurohealth, the journal of the European Observatory on Health Systems etc based at the LSE. It has a whole load of papers on health inequalities. One paper makes the point that we should be looking at non-death health outcomes, instaead of simply worrying about how obesity or smoking leads to early death. This would open the door to trying to look at some social measures, not to mention ideas like happiness.
One of the papers looks at how welfare policies might contribute to reducing health inequalities. An interesting series of tables shows how countries vary on the generosity of family policies (the Nordics come out top of course, with the UK fairly low down). But the UK has very low child injuries although it is somewhat above the line child poverty and infant mortality. Perhaps I’m wrong the moan about rabid press coverage of child abuse scandals, because this might suggest that the UK level of anxiety about child deaths and injuries may make a difference to our children. Perhaps the Daily Mail needs to pay attention to the US and New Zealand, which are well above the line. Or perhaps it needs to focus on ill-treatemtn of older people, and it might have the desired effect.
See it on the web: http://www.euro.who.int/Document/Obs/Eurohealth15_3.pdf