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  • 17th May 2016 | By David Jolley

    Amongst the lessons to be learned this week came (yet another) report from the Ombudsman’s office which describes failings in the care of older people in hospital and at the point of discharge.

    http://www.ombudsman.org.uk/__data/assets/pdf_file/0006/36483/Selected-summaries-of-investigations-by-PHSO-Apr-to-June-2015-2.pdf

    http://www.theguardian.com/commentisfree/2016/may/12/hospital-policy-older-people-dying-ombudsman

    http://www.theguardian.com/society/2016/may/10/nhs-discharge-system-failing-elderly-patients-says-nhs-ombudsman-report-vulnerable-hospital

    There is no doubt that most people receive good or excellent care from our statutory services, but these stories of failure and inhumanity toward the vulnerable and their families are not unique and many of us hear similar or worse week by week from friends who will not proceed to formal complaints which would reach the ombudsman.

    But I was planning to share something of my bewilderment, anger and frustration about the iniquity of NHS Continuing Care Funding – or lack of it.

    It is now two weeks since I was involved in an Independent Review of a judgement concerning who should pay for the long-term care of an individual with advanced, severe dementia. This is not the first occasion I have supported a family in trying to right wrongs – They have all been hurt and outraged that someone, clearly damaged and rendered dependent on others for care by illness, has been declared to have only social needs. The situations I have detailed knowledge of include a woman who had been an active and trusted carer for her grandchildren until struck down by a stroke which rendered her instantly incapable and unable to comprehend or communicate. She is declared (incorrectly) to have capacity, though her close family have been unable to have any meaningful exchanges with her since the stroke. Despite obvious neurological evidence of illness and a brain scan showing a massive infarction, her needs are said to be social in origin.

    But much more commonly, people with progressive and advanced dementia and their families find themselves misused in this way.

    Professor Luke Clements has written clearly and compassionately about this – tracing the history and comparing the charade of assessment against a checklist with the rulings of courts for those few cases which have got to court:

    www.rcpsych.ac.uk/pdf/OA-11-35%20NHS_Funding_for_CC_revised_Guidance.pdf

    In this matter, the courts have made reasonable judgements – their criteria for responsibility resting with the NHS are far lower than those demanded by the checklist. The checklist is said to be there only as a guide and to be interpreted by the assessing panel based on their knowledge of the individual and the full history of the situation. In practice, as I have seen it, people on panels often have little or no clinical knowledge of the individual. They use the checklist slavishly and as the absolute determinant of their decision and rate each component as meanly as can be – often beyond belief and evidence. In this most recent case, my evidence as the senior responsible clinician had been set aside as inadmissible. The family were advised that it would be inappropriate to involve a legal representative as the panel would not be addressing matters of law.

    In a personal note, even Luke Clements admits he does not know how this institutionalised injustice can be corrected.

    Day after day people who have been laid low by illness are being ‘assessed’ to be social problems by people who otherwise use the English language correctly. It would seem that in this the Law is of no consequence. Humpty Dumpty rules http://www.goodreads.com/quotes/12608-when-i-use-a-word-humpty-dumpty-said-in-rather

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    12th May 2016 | By David Jolley

    I thought that this week would be devoted to NHS Continuing Care – I was involved in an Independent Review Panel on Monday – but best leave it for a little while as the passions cool.

    Susan Benbow has been blogging for much longer and her recent posts have pricked me: www.oldermindmatters.com/blog

    Susan always researches her blogs very thoroughly and provides useful links to sources I have usually not heard of or otherwise overlooked. The most recent tells of her attendance at the Faculty of Old Age Psychiatry meeting in Nottingham. The Group/Section/Faculty has been my life from 1974 onwards. It was there I saw Felix Post demonstrate the most elegant of Chairmanships, guiding the energies of Brice Pitt, Tom Arie, Klaus Bergmann, Sam Robinson, Gary Blessed, Carrick Macdonald, Peter Jefferies, and others to marvellous effect.

    I have not been to the last two residential conferences – and these years there is only the one meeting per annum for ordinary members – we used to meet every 3 months and the Group and Section acted then as a very important and effective mutual support device as well as lobbying force. Somewhere in amongst that is my reasoning and sadness.

    Susan remains more positive – she mentions particularly the sound contributions of Rob Howard – anti-psychotic medication is actually good treatment when people with dementia have psychotic symptoms. She tells us that John O’Brien thinks we should have more NICE guidance about dementia. Belief in paperwork over personal and clinical commitment is not for me – ‘If all the world were paper and all the sea was ink’– Uncle Mac on Saturday mornings – You learn from these wise and kindly men.

    And she tells us of the positive buzz amongst those present and the inspiration coming from leading figures – It has to be good – Quite like the old days.

    The thing which exercises me most is her pointer, with approval, to a paper from Andrew Balfour which tells of therapy from the Tavistock Clinic: Living Together with Dementia: a relationship intervention for couples living with dementia (I have taken out some of the capital letters) http://www.tccr.org.uk/images/TCCR_summary_of_the_LTwD_approach_Nov_2015_-_FINAL.pdf

    There is something almost unbelievable about THE Tavistock turning to dementia. I am sure somewhere I remember being taught that Freud felt psychotherapy was not possible in the face of dementia or other organic brain disorders, perhaps someone will correct me. I am happy enough to associate myself with the view that people with dementia and their families are people and just as much in need of a psychotherapeutic approach when things get tough as anyone else. But I am a bit troubled that the push for early diagnosis has created stress and worry for people and opened up additional opportunities for a therapy industry to exploit.

    Looking on dementia as a world phenomenon of considerable prevalence – should we be raising expectations that responses like this will be made available to everyone?

    An interesting aside within the paper refers to the PSSRU studies which make clear how expensive it is to look after people with more advanced dementia – more expensive in the London area then elsewhere in this country. These are the basic facts of life which relate to undeniable need – Need which is so often denied

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    25th April 2016 | By David Jolley

    The journey from Altrincham to Southwold is not quite coast to coast but it is pretty long and whatever way you go, it takes a few hours.

    Talk at the fish restaurant informed us that the resident population of Southwold is of the order of 800 – a tiny number – but bolstered even out of season by visitors and people from nearby villages who come for the shopping and buzz of class and liveliness. Mondays and Thursdays bring a market with food, flowers and local crafts and oddities, set in the suitably tidy but tiny market place at the head of the High Street. Down the street there are proper shops which know their specialist business – pies, papers, books, clothes and more posh clothes, banks and estate agents – a Beach Hut at £79,000! There is an Ironmongery which sells everything you might need and never realised you did - you could be lost in there for many an hour of memory.

    In the oldest part of town near to the market place and the greens and beach, the housing ranges from small to outrageously huge. Some of the most impressive, facing out to sea, have rabbits running on their front lawns – less destructive this year than we have seen previously.

    But what I want to say relates to houses as homes: In a brief moment between walks I caught a programme where a house in Crewe was purchased for £35,000. It was in a terrible state but the builder purchaser worked carefully and modestly to improve it, with a budget of less the £10,000, to transform it into a place you might be pleased to adopt as home. Revalued now at £65,000 to £70,000+. A five bedroomed semi-detached villa somewhere in London was purchased for £450,000. Shabby but nowhere near as down at heel at the Crewe house, it too was revamped but at a cost of £80,000 spent over 6 months rather than the 6 weeks in Crewe. Now lacking fireplaces, with most rooms featureless and white, its kitchen might feature in House and Garden but I’d be uncomfortable trying to poach an egg on toast. New value - £700,000 plus.

    Almost every house in Southwold is as pretty and as perfect as any doll’s house could be. Those which are not quite up to scratch are receiving attention from one of a legion of careful and skilled teams which are cutting wood, smoothing plaster, painting wall and windows. Only the very best will be good enough here.

    As an evening treat we watched the DVD of ‘Cilla’ – carried with us to take advantage of the time which holiday allows in the evenings. We grew up with her. Here she was, wearing our clothes, having our hopes, watching the cars we knew, singing our music, caught in the streams of segregation: rich from poor, Catholics from ‘Prossies’, young from old who had survived the recent war. Her family home did not have a front door – behind and above a bookies.

    It was home.

    Bobby’s home had a front door but was pinched and basic in a way hardly known these days. Later Bobby was to share space in his brother’s rented home – a building which compared unfavourably with the house ‘before’ in Crewe. But it was not about to be improved.

    Cilla came a long way. We all have come a long way.

    What stories she had to tell. What stories we have to tell – and more to come yet – unlike Cilla, whose story is told. One of us.

    And now we have lost Victoria Wood.

    It’ll be OK.

    Each morning we walked the beach and felt the wind and saw the waves coming in, and coming in, then taking all that water back, to come in again – later.

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    11th April 2016 | By David Jolley

    Retirement from clinical practice was designed to free more time with home and family. So it is proving but there are growths which I had not predicted. These include deeper appreciation of John Leigh Park: http://roundhoundcouk.ipage.com/index.html

    We have a grant to erect a chestnut paling fence around the garden of the bowling green: the grant money gives us the palings, stakes (need some more because my sums were embarrassingly wrong!), stretchers and struts. You can see the technicalities. Putting the fence in place requires effort and some expertise from our volunteer group. We are about one third of the way round the 600 feet so far – and the result is quite as thrilling as anything I have ever done.

    Being there and being identifiable as ‘parkies’ meant that mums alarmed by the presence of bees in the playground:

    ‘Bees in the Playground’ – rekindling memories of Dog in the Playground http://poetry.clusterup.com/poems/dog-in-the-playground-837. Many happy bedtime readings.

    Bees in the playground – with help from experts in Trafford - were recognised to be Tawny Mining Bees https://www.buglife.org.uk/bugs-and-habitats/tawny-mining-bee which are harmless and charming. Reassurances to mums and a notice made up to inform others who might be unsure.

    All this in the open air and within five minutes’ walk of home.

    Opening the box labelled ‘Dementia Conversations’ at Bowdon Vale means finding out more about services in Trafford – This is where we live and have lived for over 30 years but though I have worked in Manchester – South, Central and North, Salford and Tameside – I have not worked in Trafford. It is a new world. With a little help from friends I will get to know it better.

    In amongst rummage I found references to the dementia component of the Greater Manchester Health and Social Care Devolution – or ‘Dementia United’.

    I am puzzled and taken aback by some of the statements and aspirations:

    ‘Greater Manchester currently spends £221m per year on dementia across health and social care. If we diagnosed everyone on GM who we think currently has the disease this would raise to £320m per year. From these data we can estimate that the predicted cost to the taxpayer for health and social care currently provided for people with dementia across Greater Manchester will be £376.7m per year by 2021.

    Surely the logical response is to stop doing it – all it does is increase costs.

    ‘Develop a measure for Greater Manchester of the lived experience which can be tracked over the 5 year period and used to inform the effectiveness of changes.’

    A unitary measure of lived experience for people of either gender, age band, social settings, race, faith, previous complex personal experiences over many years! This will take some doing. Emperors and suits of clothes come often to mind and here is another instance.

    ‘Every person living with dementia will have access to a key worker 24 hours per day, 7 days per week who will support them to live well with dementia.' 

    'Every person living with dementia will co-produce a package of support and care which meets their needs and wants which is reviewed and updated at least once per year’.

    During the time I was a trainee with Tom Arie he was approached by a Public Health colleague who wanted us to extend the pioneering Goodmayes service to include everyone who might have dementia, depression or other mental health problems. The wise man said:

    ‘Let us do what we know how to do for those people whose needs become declared. This is a realistic ambition’.

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