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  • The Health and Social Care Information Centre turns out streams of useful and important statistics. Unhappily much of this passes most of us by because we are busy doing things and need a nudge to look when something relevant has come to light. A recent entry tells a well-balanced tale of endeavour and success in dementia care: www.hscic.gov.uk/catalogue/PUB19812

    This is exposed to the glare of publicity by the media in less sober and more scandalous terms:

    ‘Dementia diagnoses rise by one fifth after GPs offered £55 ‘bribes’:

    http://www.telegraph.co.uk/news/health/news/12108080/Dementia-diagnoses-rise-by-one-fifth-after-GPs-offered-55-bribes.html

    For those most determined to see our diagnosis rate improved, the outcome may have justified the means. For others, like me, this seemed to be a demeaning way to treat a dignified profession – rewarding an activity simply by providing a monetary reward for a desired action. We were rebuffed by the observation that the same had been done to improve care for other illness conditions: The profession has been revealed to be corruptible or at least willing to be directed by carrots rather than its own mature and informed thinking.

    I wonder what follows once the carrot has been consumed. What people need is the mature, informed guidance and care of their personal physician.

    Prescriptions of cholinesterase inhibitors have increased six fold in a decade – perhaps a desirable phenomenon, and not as expensive as it would have been because the medicines are no longer under patent. But what people with dementia and their family need much more than these medicines is the mature informed guidance and care of a team of health and social care professionals to clarify what is happening to them and to support them through the journey.

    I am really not sure what is happening with the follow through. My personal experience as I come near to ending my own clinical contributions is not reassuring.

    In two services I have been associated with CCGs have withdrawn funding from models designed to provide support within primary care on the basis that ‘they are not working’. Published studies have demonstrated that such approaches have worked in other places – at other times. Perhaps there have been errors of implementation. Perhaps there are questions of commitment. Maybe it becomes impossible to be effective when social care funding is stripped away beyond a certain level.

    In another setting, the model of referral to a memory service from 50 practices labours under the increased referral rate. Provision of confident and sufficient follow through is lacking both in the specialist service and primary care. It is wonderful to meet people and to help them in the first steps of understanding, but I am saddened and concerned for their futures.

    I wonder what other people’s experiences are.

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    Small World 20 January 2016 | Comments (0)

    My wife is an enthusiast for low tech approaches to getting things done without burning fossil fuels. We are both enthusiasts for being respectful to ordinary people and realising that we all have abilities which can be fostered or crushed.

    This month’s issue of Small World caught my eye, especially the quotation from Dr Fritz Schumacher:

    ‘The gift of material goods makes people dependent, but the gift of knowledge makes them free – provided it is the right kind of knowledge of course’

    He was thinking of developing countries where people lack basic resources including clean water and sanitation. But the ideas have relevance more widely.

    In Manchester and no doubt other towns and cities there is controversy over decisions and ‘consultations’ which are requiring cessation of some sorts of surgery in local hospitals and their relocation to other hospitals which are designated expert. From Ashton under Lyne you go to Oldham for eye problems and Stockport for genitourinary disorders. The most recent upset will see general abdominal surgery removed from Wythenshawe hospital (University Hospital of South Manchester) to concentrate resources at Stockport. Colleagues quote figures which say that outcomes in these specialist centres are better. I wonder quite how ‘outcomes’ are being defined. I do not like a system which sees me as a collection of organs rather than one person who may have a number of pathologies but wants to be treated as someone.

    How often are we to say: ‘The surgery was successful, but the patient’s life was ruined’?

    My post-Christmas reading is: The Shepherd’s Life’ by James Rebanks. He accounts for the resilience and success of his family farm by their return to old fashioned systems which do not rely on subsidies or supplements from outside agencies. Old fashioned is good to me.

    I am unhappy with the way that agencies in support of older people and people with dementia have lately gone to a central model providing handouts and commissioned services rather than a grass roots multiplex which feeds ideas and strength to a central liaison and information-exchange hub. I suspect that the experience of – Rose-Marie Droes from Holland which we heard about at Telford can help us. She began to encourage local people with dementia and their carers to come together and decide what they most needed. They found a meeting place and looked for resources which would work and that could be afforded. Thirteen centres in Holland, maybe more by now, are doing this. Other countries are picking up this the model: http://www.meetingdem.eu/. The extraordinary Dawn Brooker in Worcester is the UK lead.

    I wonder if we might join this movement through our ‘Conversations’.

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    I have been privileged to work with Dr Michael Tapley, Ann Regan and other colleagues at Willow Wood Hospice, Ashton under Lyne since summer 2010. We have developed a specialist service to help people with dementia as they approach the end of their lives using the model pioneered by Dr Victor Pace, Sharon Scott and others at St Christopher’s Hospice. In doing this we have come to work very closely with colleagues in other sectors who are caring for people with dementia and their families. This led us to establish an informal tea time network event which meets once every two months at the hospice.

    Tapley M, Regan A and Jolley D (2015) A UK hospice plays host to a local network of people involved in dementia care. European Journal of Palliative Care 22 (4) 165 – 168

    This week the session was led by Pam Kehoe who is an Admiral Nurse and has the Dementia Lead within Tameside’s General Hospital. This is a massive responsibility and one which draws upon all Pam’s experience and personal qualities. She was sharing the story of Dr John Gerrard who suffered greatly when admitted to his local general hospital. This so motivated his daughter Nicci that she has established John’s Campaign: www.johnscampaign.org.uk/

    This asks that when adults, including older people, disabled by dementia or similar conditions are admitted to hospital, their carers be allowed to stay with them and contribute to their care and treatment. The campaign asks that the families of older people are granted the same respect and privileges as the families of children in hospital. It is well established that children are more likely to make good recoveries and progress when properly supported – and the same is true for older people with disabling conditions.

    Not rocket science – but it took an individual tragedy and an able and motivated family to make the point and begin to get things done.

    Pam has support at Tameside’s Hospital for the campaign and its requirements to become active there. Over 200 hospitals around the country have signed up – Is your hospital one of them? – brilliant if they are – best tell the Chief Executive about it if they are not.

    Lots of other simple but effective ideas were exchanged. A lady from Public Health (Public Health is doing wonders for people with dementia in Tameside) gave me a Twiddle Muff – I am ashamed to say I did not know about Twiddle Muffs – I do now – and they are being used to good effect to calm the anxieties of ladies in Ashton under Lyne.

    www.best-alzheimers-products.com/twiddle-muff.html

    Now muffs might be used by men too – but there is the alternative (for either gender) of a Twiddle Box – or some such bit of kit which has knobs and hinges holes and corners, maybe a drawer or two. There are versions which can be purchased – but the charismatic Pam was moved and astonished when men from the Estates Department came along and proudly presented her with 20 boxes they have produced for use in the Hospital. She had not asked – but they had heard the story and seen the effectiveness of the muffs (which are being knitted by knitting clubs all around Ashton!). They could see an opportunity to use their skills – hey presto!

    www.nursingtimes.net/Journals/2014/08/07/p/t/t/130814-Low-cost-strategies-to-improve-dementia-care.pdf

    So the Hospice is a safe place within the spectrum of services for people with dementia.

    Meeting informally over tea and cake encourages friendships and generates and shares ideas. Nothing here costs a lot – but the outcomes are priceless.

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    4th January 2016 | By David Jolley

    Media attention over this holiday period has been dominated by concerns about the weather, rain and floods, especially in the north of England. Whilst this has been part of a global phenomenon of unusual weather, worries have surfaced that failure to provide the best flood defences in vulnerable places has contributed to the devastation.

    Attention has also been drawn to the murder of Rita King, an 81 year old resident of a care home in Essex by her 86 year old husband Ronald. There seems little doubt that Ronald was responsible for his wife’s death and had planned the act well ahead of the killing. She is said to have a diagnosis of dementia, her move into care was occasioned because he found he could no longer cope with her needs at home. He is himself disabled and had booked to stay at the care home over the holiday period, taking with him the gun which would be used. He is quoted as saying: ‘She had had enough’.

    No doubt more details will emerge about the background and current factors but this is a personal tragedy for Rita and Ronald and their family and friends. It is an alarming happening for other residents and staff of the care home and everyone in the care industries.

    www.theguardian.com/uk-news/2015/dec/30/essex-care-home-shooting-pensioner-ronald-king-charged

    www.mirror.co.uk/news/uk-news/pensioner-shot-dead-husband-pictured-7091586

    Death in a care home is usually a matter of routine. Sixty percent of people with dementia die in a care home. But death at the hands of another whilst in care is unusual.

    In 2014 Ryan Guest - a 33 year old man killed his grandmother – smothering her on the instruction of voices which he believed to be God. He has paranoid schizophrenia and is now detained in Broadmoor. He had left another prisoner in a vegetative state after a previous attack

    www.bbc.co.uk/news/uk-england-bristol-27936735

    www.bbc.co.uk/news/uk-england-bristol-30374727

    Similarities include kinship to the victim and altered health of the perpetrator, but there are likely to be many differences between these cases. It is a constant worry that when people are under stress and have responsibilities for vulnerable relatives, they may take action which they believe to be well motivated but are damaging or destructive.

    Reducing circumstances which produce or compound stress, identifying trigger times and taking preventative action are things we will want to do and ought to do.

    In contrast we are more used to reading of problems in care produced by neglect or orchestrated institutional abuse:

    www.telegraph.co.uk/news/health/news/11442024/Police-investigate-neglect-claims-following-death-of-care-home-pensioner.html

    Orchid View 2013

    http://www.dailymail.co.uk/news/article-2465955/Five-elderly-residents-died-neglect-care-home-institutionalised-abuse.html

    Such happenings are also identified as consequences of stress within a system where care to the most vulnerable is underfunded and low in priority and kudos. Crises receive dramatic, scandalised headlines for a few days but these are rarely followed up by shifts of funding, training and ongoing support which might reduce the likelihood of similar tragedies in the future.

    Dr Claire Hilton is currently researching the work of Barbara Robb whose investigations and publication of ‘Sans Everything – a case to answer’ in 1967 gave impetus to the movement which generated Psychogeriatric Services (AKA Old Age Psychiatry) and other more positive approaches. Much has changed in the interim, but much remains unchanged and is challenged only at times of scandal. Blame is too often and too easily directed at immediate relatives or hands-on staff.

    The current climate is reflected in some of the statistics gathered by Age UK:

    Median time to death after admission to a care home: 462 days 

    Growth in population 65+ since 2001 – 11% - Growth of places in care homes – 0.3%

    Estimate of older people abused per annum: 500,000 (150,000 being in care)

    Day care places halved 2014 – 15

    Spending on Social Care in England – reduced by £770m 2010 – 2015

    Threshold for the provision of any care: ‘Substantial need’ in 85% of Authorities

    900,000 people with care related needs receive no help from formal agencies

    www.ageuk.org.uk/Documents/EN-GB/Factsheets/Later_Life_UK_factsheet.pdf?dtrk=true

    This is a man-made microclimate which leads to man-made tragedies. It can be more directly modified than the phenomena which are causing recurrent problems to the Lake District and other parts of the world. It is a question of will.

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