An advertisement from an American palliative care organisation reaches me. It’s for a one-hour phone conference; you pay for the phone line. Like webinars, which I was ignorant of just a few months ago, but now see everywhere, a new form of meeting to me. Here is the come-on:

Severe economic conditions and demographic strains threaten both our hospitals and our health care system. So how does a hospital remain fiscally viable while treating its costliest patients — those aging with serious, chronic illnesses? A recent study published in Archives of Internal Medicine reveals how hospital palliative care programs are one crucial answer.

Join us and learn to . . . [among other things]

· Align with and become integral to the hospital’s mission

It’s obviously a major new target for palliative care to cut healthcare system costs; can the British government be far behind? I just love all that management speak; I must have the CD-ROM for my mp3 player. That was a joke: my mp3 player plays only music; it has not allowed a podcast across its circuits.

Could it be perhaps that rather than subsidisng bankers, our governments could actually think about improving services for frail older people? Still, a one-hour phone conference is, I suppose, an earnest of their good cost-cutting intentions over there.

The Government has produced Guidance on building a local sense of belonging; why not local people, you ask, presumably because they don’t have enough of a sense of belonging to do it. A lot of this is about sports and arts activities, and there’s a lot of practical material.

But one of the entries is about shared histories of local services and I should like to point out that a lot of local social and health services, including hospices, generate a lot of social support, and we ought to be celebrating our local contribution and achievements, too.

Department for Communities and Local Government (2009) Guidance on building a local sense of belonging London: DCLG.

It’s on the internet, and has lots of internet links: http://www.communities.gov.uk/documents/communities/pdf/1112832.pdf

A column in Guardian Public the freebie mag for people who buy things for the public sector (you thought The Guardian was publishing this out of public duty – naïve old you; it hopes to get through to people who spend money on advertising) contains a puff by a Futurebuilders man for their work. This is the organisation that provides up-front funding to help voluntary organisations bid for public contracts.

True to the principle of making the readership of a magazine (in this case commissioners of public services) feel good, the author writes encouragingly that it seems that the distinctiveness of the voluntary sector is going to come from intelligent commissioning. This means cleverness from all those people who set up contracts with voluntary bodies.

No Jonathan, the whole point about the voluntary sector is that it decides what it wants to do and how to do it, and people go and work in it because they have freedom to be creative about things (or, to be brutally accurate, also to get stuck in the past and do things like people did them a hundred years ago provided there’s an endowment). The results are distinctive because they don’t have to fit into any pattern, while on the other hand most commissioning is about complying with government guidelines. E.g, the St Christopher’s contract with its local PCTs, which is an excellent piece of professional work on their part and produced through an exemplary process of communication and collaboration, but actually requires the Hospice to comply with the NICE Guidelines on palliative care.

Let’s stick with the idea that intelligent commissioners, like the people who commission St Christopher’s, look for something good and interesting and then commission it; they don’t create soimething distinctive themselves and then go out and get some cheap organisation to do it their way.

Lewis, J. (2008) The future is bright for the third sector. Public October: 42-3.

Someone at the charity, Missing People, sends me a research report on the experiences of the families of missing people. This seems to be because they quote me in my phase of doing research on this topic, fifteen years ago.

The experiences of such families are connected to bereavement, but without the possibility of restoration. ‘The lack of closure was described by interviewees as being “in limbo”; unable to grieve without the certainty and ritual of death and burial, yet unable to recover from the pain of the loss without knowing the missing person’s whereabouts or condition’.(p.25)

I wonder if bereavement services ever get referrals of the families of missing people, and if not why not? Most hospices have a lot of experience of bringing together relatives who have been estranged for years. Recently, we had a family who found their missing person only when they found the death certificate from St Christopher’s, and we went to a good deal of trouble to tell them as much as possible about the life of their now dead family member.

So missing persons is something hospices should probably think about.

Holmes L. (2008) Living in Limbo: The experiences of, and impacts on, the families of missing people. London: Missing People.

A pile of information reminds me about the University of Stirling Dementia Services Centre, although it seems to have forgotten its pioneering founder, Mary Marshall, who would have told you that they might have forgotten, but it was just about not keeping their brains active and there is no such thing as a senior moment. However, they have a shiny new building named after Iris Murdoch, and a dementia-friendly garden. I wonder how many hospices have dementia friendly gardens.

However, they do have a lot of practical stuff you can use to help people with dementia, a growing issue for many palliative care services. It’s got an internet bookshop, although this does seem to trap you and refuse to let you back to the main site again – a bit like going to a National Trust property, you can’t get out without going through the shop; this just takes it a step further, you can’t get out of the shop either. There were special deals before Christmas, but perhaps you can credit crunch them into longer discounts for January. But as academics, they probably don’t do guilt.

Find it at: http://www.dementia.stir.ac.uk/default.asp

A newly published study about young carers includes some material about bereavement when caring responsibilities end:

Bereavement and the death of the person being supported, whilst leading to the end of current caring responsibilities, can leave young adults with needs that require resolution such as emotional support or counselling, making practical arrangements following a death,change of house tenancy, securing appropriate benefits, and continuing with or making new plans for their future education, training or employment. These young adult carers experience a different type of transition whereby their role and in some cases their identity, which has been tied up with caring, have changed requiring them to adjust to a different lifestyle and family circumstances as well as adapt to their loss. Only one participant in our sample had ceased caring due to bereavement. Sarah (aged 18) had lived with her grandmother since birth and took on caring tasks for her grandmother as her health deteriorated three years earlier. During that period Sarah missed a good deal of school, which impacted on her examination results. She is now learning to cope on her own with some limited support from extended family but is no longer eligible to attend a young carers project for formal support as this stops for those aged 18 years and above (p 29).

There’s also an interesting point made by a young carer about the effect of a death of someone else in the family on the caring relationship

“…when she became ill, before that we were, we were really quite close because obviously dad’s death brought us very close together and I’ve kind of always been a mummy’s girl but now it’s just, now it’s just kind of like changed like we, I, don’t know the roles have just
reversed and I find that really hard to cope with because I’m not used to that, I’m not used to being the carer, well I am a carer inside, but I’m not the one that wants to be caring for their mum”. (Becky, aged 18)
(p 40)
Becker, F. and Becker, S. (2008) Young Adult Carers in the UK: Experiences, Needs and Services for Carers aged 16-24. London: The Princess Royal Trust for Carers.

It’s on the internet at: http://static.carers.org/files/yac20report-final-241008-3787.pdf

A study by the same authors for the government’s official body on rural life, providing more general evidence about young carers particularly in rural settings, with lots of statistics, but no material about death and dying, is:

Becker, F. and Becker, S. (2008)Service needs and delivery following the onset of caring amongst children and young adults: evidenced based review. Cheltenham: Commission for Rural Communities.

Also on the internet at: http://www.ruralcommunities.gov.uk/files/CRC%20web36%20YCIRE.pdf

It might be that bereavement doesn’t come up there because bereavement services in rural areas are also not so good.

You may remember the Bournewood judgement, which was about whether a man with mental health difficulties was deprived of his liberty by being admitted to a care home without safeguards for his freedoms. The Department of Health was obliged by the European Court of Human Rights to do something about it and promised to do so while the Mental Health Act 2007 has going through Parliament. It is now consulting on what to do, which really involves the new Care Quality Commission interviewing ptoentially disadvantaged people when it does its inspections. Social workers might want to respond, if they have views about this; hospices might feel that this will be another drag on them when inspections take place.

But what it points up is that people who have limitations in their mental capacity might have their reasonable freedoms infringed by being admitted to somewhere (even a hospice) for ‘care’. You will probably be familiar with the ‘what on earth are we going to do about him’ type discussions that lead to restrictions on someone when they are a uisnace to everyone and they are provided with ‘care’ to reduce the hassle they cause. The proposals are a bit of a safeguard against this happening.

See the consultation at: http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_092048

You may not realise that 1st January 2009 was the 100th anniversary of the first introduction of the old age pension. The DWP has a nice ‘timeline’ giving a brief history:

http://www.dwp.gov.uk/mediacentre/pensioncentenary/state-pension-timeline.pdf