To a coffee party fund-raiser for a small (£100k) charity, Dyscover (http://dyscover.ndo.co.uk/), that supports people who have had accidents or strokes and have dysphasia (and so cannot connect up their brain with the words that their mouth says). They do speech therapy and social activities, including some art.

One of many local support groups, as one can see from the Stroke Association’s website (http://www.stroke.org.uk/). No sign of any social services or PCT grant to help them. The way they put it, if you have a stroke, the health service is very good at getting you to the point where you can go to the toilet and feed yourself, then you are discharged and if you are lucky you might get some physiotherapy and speech therapy (about six weeks). Otherwise the relatives are on their own.

A carer present talked movingly about how she had to do such a lot for a husband who had previously been a public speaker and writer and could now do neither. What this says about the NHS is that it has become such an acute service that it now does not do anything about any of the social effects of the illnesses it treats, and social services have been so strapped for cash and staff that low-level distress does not even come on the radar. It’s all ripe for a Dame Cicely Saunders figure to realise, as she did for the care of people dying of incurable cancer, that you have to care for the whole person, not just the bits that you can get better to the point that you can throw them out of your hospital.

A diary in The Guardian from a relative of the poor care given his mother: the problems were largely about simple failure to be nice to people, make sure people eat, and make sure that simple needs are met, like having their hearing aids fitted every day so that they can communicate. This is not nursing or medicine, but simple good personal service, but it could probably be helped by nurses and doctors who took a detailed interest in the detail of how people were looked after before they worried about this or that professional procedure.
Skellington, D. Catalogue of disaster. Guardian Society 26th May 2008: 1-2

Candle in St Cristopher's chapel last year

Some minister has talked about ‘moving on’ the one incompetent teacher, said to be working in each school (Curtis P Every school has at least one bad teacher, says minister. Guardian 27th May 2008: 10. How long can it be before they are talking about the ‘social justice issue’ that loads of staff in the public sector are not among the ‘best-performing’, including people in health and social care. But what does it mean? That these people are irremediably hopeless? Or square hole and round peg sufferers? Or that they are just a bit less good than others? Or the policy that guides what they are supposed to do doesn’t fit with what they think is important? Does that mean they are not entitled to any contribution to judging what is important? Or are they being blamed for the problems of struggling on in an under-funded system? Or are they depressed and jaundiced by the constant assumption that only the public sector employs all these hopeless people? Why not have a look at the incompetent shambles that many private companies make of serving the public?

An interesting paper (also picked up at the Primary care conference) about the information GPs should have in order to be able to commission services for their patients. It includes a list of information that it would be sensible to have about services in your area. I wonder if palliative care providers have thought to provide their local GPs with regularly updated information about admission waits and services available; it looks to become standard for local hospitals to do this. Regular updates might counteract myths about palliative care providers that are voluntary organisations outside the usual local information resources.
Independent Steering Group (Sir William Wells, Chair) The Intelligent Practice: Understanding the Information Needs of GP commissioners. London: Dr Foster Intelligence.

Picking up a copy of School Health a magazine for school health nurses, draws attention to how schools ought to be paying attention to end of life issues for the children they are responsible for. A good article on school health staff integration with community nursing teams suggests one line of communication.
Richardson-Todd, B. (2008) Integrated nursing teams and school nursing. School Health 4(1): 2-4.

People mainly concerned with end of life care may not have noticed that in children’s social care the government is privatising social work, allowing social workers to set up practices like GPs to provide services to children in a particular area, contracted to their local council. An article in today’s Community Care: Hayes, D. (2008) Helping children GP-style. Community Care 22 May 2008 14-15.

Could this idea move to adult services in the future?
Another useful Community Care article: http://www.communitycare.co.uk/Articles/2008/04/17/102091/professionals-views-of-gp-style-social-work-practices.html

The original Green paper proposals: http://www.dcsf.gov.uk/publications/timeforchange/docs/timeforchange.pdf

St Christopher's water garden last year

To the Primary Care Conference in Birmingham, where a day-long series of seminars on palliative care were very well-attended, by community healthcare nurses, GPs and a range of other people. I gave a talk on some structured approaches to assessment and intervention on spiritual care for dying people, with references to some useful tools.

Picked up at the Primary Care Conference the interesting journal Clinical Ethics. Vol 2(4) has a good article on the ethics of child protection work from a medical point of view, particularly looking at recent GMC cases, but also wider duties on healthcare staff. While all healthcare staff have a clear duty of care to children, the ambiguity of many of the indicators of child abuse raises questions about how proactive they should be on pushing a child into the system, particularly if you have doubts about how effective the system is in helping children.
Larcher, V. (2007) Ethical issues in child protection. Clinical Ethics 2(4): 208-12.

Also a good summary of issues around autonomy, making the point that capacity is about competence to decide on a particular point, whereas autonomy is a more general ability to make choices. It interestingly distinguishes between autonomy as exercising a choice, as a form of moral decision-making, as connected with integrity and identity and as defined by procedural requirements.

Slowther, A-M (2007) The concept of autonomy and its interpretation in health care. Clinical Ethics. 2(4): 173-5.

St Christopher's entrance last year

While I am in Poland, this book edited by Nigel Hartley and myself based on the St Christopher’s experience in expanding the creative arts has been published, and copies are waiting for me on return. It has a stunning painting by a patient on the cover, and some really very practical articles by some of our artists. Link to publisher’s website: Jessica Kingsley Publishers