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  • 07th December 2015 | By David Jolley

    On Wednesday of this week I was able to attend a study day organised by Compton Hospice www.compton-hospice.org.uk

    The day was set at the Science Park which was a good enough venue other than the dodgy-looking car park for conference people ‘only a minute’s walk away’. Even that turned out to be safer than I feared.

    This was an assembly of people from hospices and similar backgrounds and demonstrated the unquenched desire of the hospice movement and people who work in it to reach out to a wider community and help us all with our feelings about death. The theme was reaching out to people who are approaching death but who often find establishment services unwelcoming.

    Ros Taylor of Hospice UK set us off with one of those inspirational and instructive presentations which fill me so full that I need a day or more to digest the treat. She made it clear that hospices are not limited to cancer care, not limited to admission to a hospice for a good death. She introduced two very recent publications:

    First from Hospice UK http://endoflifecareambitions.org.uk/

    This national framework for action sets out six ‘ambitions’ – principles for how care for those nearing death should be delivered at local level 

    1. Each person is seen as an individual 
    2. Each person gets fair access to care 
    3. Maximising comfort and wellbeing  
    4. Care is coordinated 
    5. All staff are prepared to care 
    6. Each community is prepared to help

    And a systematic review of evidence of what works and what remains to be learned from NIHR


    Amongst the barriers between people and hospices is ‘Death Anxiety’ – Death is a 100% certainty but few people are prepared to address this inescapable fact and deal with it positively for themselves or others. Helping people with their aversion to death and dying requires work to know them, provide support but also to help them affirm self-esteem and meaning. Photographs are often useful in putting together the story, books people are reading or hold dear and sharing in the social universe of each individual all contribute. This is therapy with ‘Family Drivers’ – cf Syringe Drivers.

    Examples of work with hard to reach populations included Loraine McBride and Jeff Parks reflecting on their work in a prison which houses 1,600 men and will increase to 2,600. Mental Hospitals are gone but this alternative institutional world is thriving. Fifty is considered old in prison and death comes early to this population. There has been 100% increase in over 50s in prison in 12 years, 164% increase in over 60s. 

    Sughra Amed gave an immensely impressive review of relations between the worlds of British Muslims and hospices. ‘We need to talk and listen’ ‘It is the only way – Not everyone can or does read leaflets’. 

    There is a report: http://www.woolf.cam.ac.uk/uploads/Bridging%20the%20Gap.pdf

    Cliff Hawkins spoke about work with people who are dying with a Learning Disability, illustrating the issues encountered with the death of one man in his 30s. And Cliff directed us to many resources including Sue Reid’s ‘Supporting people who have intellectual disabilities with loss and bereavement’. 

    Kathryn Almac reviewed the special problems encountered by the LGB community which may represent 5-7% of the population, and Transsexuals who number 300,000 +.

    There is a report: http://dyingmatters.org/page/lgbt-people-let-down-end-life-care-services

    Shirley Barrett and her colleague gave a fascinating insider view of living and dying as a Romany – and the two-way barriers which make it difficult for travellers to access good palliative care and for hospices to be trusted and effective in a community where death comes at least 10 years earlier on average than in the base population


    Death comes even earlier to the homeless – 6,500 homeless people in London currently – and rising as consequence of austerity initiatives. Dr Caroline Shulman described her work with this population and research findings: death in their 40s, multiple hospital admissions, diagnoses of Personality Disorder, Alcohol and other substance misuse, self-discharge: this is so difficult.


    I missed Dr Janet Reiss on asylum seekers. 

    Maurice Lawrence spoke on dementia – describing work to bring better care and better deaths to people with dementia in care homes. The numbers are so huge compared with any of the other disadvantaged groups considered on this day. Death with dementia accounts for at least one in four deaths in the UK. Better care in nursing homes is an essential aim. The difficulties of reaching people with dementia and achieving meaningful and useful communication with them require determined exploration of skills and humility to learn what can be good for each individual and family.

    The marvellous thing is that hospices have begun to lose their ‘Dementia Anxiety’ and are beginning to establish a regular role in local services for people with dementia. This whole day told us that the hospice movement and its people have much to offer and they are prepared to share it with whoever needs it. Dame Cicely Saunders will be pleased to know that her spirit lives on.


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    People or Paper? 30 November 2015 | Comments (0)

    30th November 2015 | By David Jolley

    Firstly an apology in that I am told the link I gave to the Lancet article about the Goodmayes service for old people did not work: Here is a link which does work this morning! http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(70)90357-0/abstract

    This gives only the abstract so that people will need institutional access to read the full article. This is a shame because it means this classic contribution, which is the cornerstone of all that is good which has followed, will be unavailable to many who would like to read it. After all these years I would hope it might be made openly available.

    The essence of the service created by Tom Arie and his colleagues was to start with what was given – staff and wards in a large, overcrowded and poorly resourced mental hospital – and to make progressively better use of them with minimal additional funds. Tom led from the front, seeing every new referral at home himself in the early day, taking responsibility for a well-informed assessment and agreeing a plan of what to do with the individual and their family and other carers. In many instances it proved possible to make matters better by the exhibition of sound medical skills in the context where they were most needed. The involvement of others and identification of local sources of help and support followed on. Other agencies devoted to the welfare of older people were pleased and receptive, for they found that they were helped in understanding and by therapies – there was a new dimension to the force.

    Tom continues to help people think ‘out of the mental hospital box: recruiting good practice, good sense, intuition and mutual trust and respect – ‘be available, be responsive and flexible and see people through.’

    Next week I am invited, with others, to discuss DoLS and Protective Care with people from the Law Commission.



    The contrast with Goodmayes could hardly be more stark: grubbing around to make do with whatever we could lay hands on against a paper-based, legalistic pursuits of Rights regardless of expense.

    Deprivation of Liberty Standards have been required in response to poor practice which led to a European Court ruling. A sequence of Court Judgements has produced, by accumulative precedents, a bizarre situation within which millions of pounds are being spent on people with dementia to no obvious practical benefit. To the contrary people with dementia and their families feel oppressed by the legislation, stigmatised by the label, disadvantaged and currently deemed ‘Detained by the State’ and so requiring referral to the Coroner for Inquest when they die of their well understood terminal illness. This harm to individuals stands alongside the harm to others as resources are syphoned away from practical care to feed the demands of Law. No other country in Europe or anywhere else is behaving in this way. The Law Commission’s thoughtful and elegant Protective Care’ proposal as an alternative to DoLS has much to commend it. Unhappily the costs estimated in misleadingly exquisite detail in the impact assessment would almost certainly be as great as those of full implementation of DoLS. The consequences in terms of stigma and disadvantage would probably be as great and spread to almost the whole community of people with dementia. While requiring, by law, better services, the process would take away resource which might otherwise be available to provide care, should Central Government allow Local Government the where-with-all to spend.

    There are splendid people in our small group which will assemble next week. We are not alone for this matter is exercising more and more discussion in politics as well as the care community.

    The task is difficult. It requires, as did the Goodmayes initiative, a brave, clear headed return to a consideration of what is important, what we want to achieve and how this can be done with creative and well balanced use of what we have.

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    23rd November 2015 | By David Jolley

    Rose-Marie Droes from Holland began to encourage local people with dementia and their carers to come together and decide what they most needed, from the 1990s. Mostly they liked to have a meeting place and they set about finding resources which would work and that could be afforded. Having found this to be a useful and effective approach in 13 centres in Holland, she has been encouraging other countries to look at the model: http://www.meetingdem.eu/

    Italy, Poland and the UK are involved in the current project: our colleagues in Worcester are leading the UK component. The essence, as I understood it, requires an entrepreneurial approach to identify, mobilise and coordinate local strengths. The details of what will happen vary with locality: there is a postcode patchwork of brightness that fits, rather than an imposed/handed down uniformity from an all-knowing national or international source. Now isn’t that a good idea!

    Toby Williamson reported on a study of how far the Dementia Friendly Communities idea has been adopted – in England and in other European countries – perhaps not as widely as we have thought even here, and the take up elsewhere is sparse. Most initiatives depend upon local enthusiasts and there is little input from formal bodies so far. Toby’s work includes the Mental Health Foundation’s consideration of framing dementia as a disability rather than an illness http://mentalhealth.org.uk/content/assets/PDF/publications/dementia-rights-policy-discussion.pdf

    Seems to me that many disabilities are consequent of the effects of illness. For most of us it is the impairments and disabilities which cause us to notice something is wrong. Finding ways of coping despite them is what counts in the absence of treatment strategies which might counter the disease process itself. 

    This is why all these societal responses are so important in making life better for people with dementia and their families. Progress is being made and good practices shared.

    Today we checked with a small gathering of consultants, trainee psychiatrists and medical students: Who has read The First Year of the Goodmayes Psychiatric service for Old People? http://www.ncbi.nlm.nih.gov/pubmed/4098447

    Answer – 2/9 This is a shame – Let’s all do it now – even the abstract is worth it



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    16th November 2015 | By David Jolley

    Caroline Sutcliffe and I were part of a parallel session which took aEuropean view. To be honest I have not given a lot of time to the international field: I did once go to Holland and saw their enormous Nursing Homes and on another occasion followed, bewildered, in a group which visited Sweden and Denmark. We met lovely people who were developing services for older people with dementia and other mental disorders and there was real sense of shared mission.

    Over the past three years I have been privileged to share with colleagues in Manchester in an eight country study looking at current services and profiles of people with dementia cared for at home but on the cusp of breakdown, or recently admitted to a care home when life in the community was found to be too difficult. Caroline presented an overview of the study and its findings: http://sites.nursing.manchester.ac.uk/pssru/research/ServiceArrangementsandIntegration/RightTimePlaceCare/

    Social circumstances of people at home were quite different country by country, with a South to North drift away from living within multi-generational households (Spain) toward living alone or with a husband or wife (Finland). Arrangement of services and who provides what are also different. Never-the-less the characteristics predicting breakdown were consistent across countries: living alone, being very old, having more severe cognitive loss and more impaired abilities for self-care were all associated with breakdown, as was the presence and intensity of non-cognitive symptoms. Stress on the main carer, either directly from their involvement with the individual with dementia, or from a combination of responsibilities, was also a powerful contributor to moving into care. Amongst those people moving into care during the follow up within the study, measures of non-cognitive dysfunction were reduced once they had moved as were measures of carer stress.

    So I would say there is quite a lot within this that says we should view admission to care as a more positive option within the spectrum of services, than is currently fashionable.

    The most significant news of the week has been the death of Peter Ashley. He was a charismatic figure:  massive and unbowed by his diagnosis of Lewy Body Dementia. He was pleased to have the diagnosis as an explanation of symptoms he had not understood. He devoted his last years to making it clear that people with dementia are PEOPLE. They have knowledge, views and can make practical suggestions which are beyond those which professionals might offer. Famously he refused to sit in God’s waiting room to die:  

    ‘I am living with dementia, not dying of dementia.’ 

    That is not to say that dementia is not a terminal illness, it is, but the years of life with it are to be lived to full effect and enjoyment. As I understand it, Peter did not die of dementia but of another terminal illness, with dementia. I guess that will cause him to smile in reflection.

    He has been a hero and made a large contribution to bringing dementia out of the shadows and to counter the fears and stigma which have been associated with it. We will remember him with gratitude.



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