• Disadvantaged Dying 07 December 2015 | View comments

  • 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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