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  • 13th June 2016 | By David Jolley

    It was my sadness and privilege to attend the funeral of Professor Rob Jones at St Michael’s and All Angels Church, Beeston on Tuesday of this week (7.6.16).

    Rob and I came together as trainees in psychiatry in Manchester during the 1970s. At one wonderful time we, with Clive Hyde, formed the junior members of the ‘firm’ supporting Dr John Johnson who was the clinician who led and established the teaching service in South Manchester. We were proud to learn so much about the real characteristics and needs of patients and families and to make use of the understanding which came from the phenomenological school which JJ and others had been part of. We were and are its extension into the future.

    We were colleagues but the bonds were those of friendship and trust, shared visions and commitments.

    Rob diverted for a time to a research project with David Goldberg and Beverley Hughes (Now Dame Beverley) – this was to study the clinical, social and economics of life with schizophrenia amongst the clienteles of a District General Hospital Psychiatric Unit (Withington Hospital – now much reduced as Laureate House, Wythenshawe Hospital) and a District Mental Hospital (I think this was Prestwich Hospital – Salford/Bury – now replaced by a unit at Hope Hospital, though a Forensic unit remains on the Prestwich site). Their seminal paper, with Rob its first author, appeared in Psychological Medicine 1980 10(3) 493-505.

    So Rob learned the skills of clinical research from one of the masters of the art and in company with another outstanding social scientist. He came back to clinical work and, most happily for us all, joined our South Manchester Psychogeriatric Service as its Senior Registrar. From us he went to support Tom Arie as Senior Lecturer in the unique Department of Health Care of the Elderly. Together they have done marvellous things – establishing that department as an international leader in the fields of psychiatry of old age and the medicine of old age and emphasising the advantages of those disciplines working together as one unit. What a pity so few services have been able to follow this example – though its credibility is widely acknowledged. Frustratingly it is now common for the psychiatry of old age and the medicine of old age to be provided through different and potentially competing NHS Trusts! How absurd.

    Both Rob and Tom also contributed generously and effectively to the work of the Royal College of Psychiatrists, particularly the Special Interest Group – Section – Faculty of Psychiatry of Old Age. Rob was a loyal, honest, determined, reliable presence in all these settings over all the years. He was the man to turn to for wisdom and knowledge in matters of law. Many have been thankful and many have been inspired. Though experiencing ill health for a number of years, and despite being beyond the usual age of retirement, Rob was still working on a part time basis at the time of his death. It was in this role that his worth and stature were eventually acknowledged with the award of an Honorary Chair.

    But how little I knew him. How much there was to learn on this sad day. St Michael’s and All Angels graces Church Street. At right angles to this is Chapel Street where I parked near to the Methodist Church. At the end of Chapel Street is King George’s Park – where I was to spend a little time just to think, be grateful and feel very small. Beyond the hedge a buttercup meadow is home to three elegant ponies who played in the sunshine and the grass and the buttercups. This tiny, tidy, welcoming piece of earth has been the secure setting for his life and the family.

    The service began in Welsh: Ar Hyd y Nos – and finished in Italian – Nessun dorma. But most was conducted in English.

    There were caring words from family: his elder brother Michael, children Hayden, Rhian, David and Sian, son-in-law Mark. Tom Dening gave an appreciation of Rob’s professional life. A granddaughter sang: Be still for the presence of the Lord, the Holy One is here.

    The minister remembered his last meeting with Rob at his youngest grandson’s baptism in this church just a short time ago.

    We heard of Rob’s enthusiasms for nature, travel and athletic pursuits from his youth and continued through adult life – Inspiring others, taking delight in their interests, abilities and views. He edited his own newspaper from his bedroom whilst at school, cultivated pet mice, snorkelled for hours – and drew others to the joy of it. He ran for his health despite his health, worked on for this was his passion; knew music and culture as enrichers of all our lives. This is a great family and they shared their thanks and love and pride and anguish and acceptance in their loss. Diane, his wife, did not speak but her presence now and through all these things is a power for peace.

    Even in the direction for donations Rob’s generous commitment to local endeavour rings clear:

    The Trent Dementia Services Development Centre: www.trentdsdc.org.uk/. How wonderful to find that this DSDC has survived and is still an impressively useful resource

    The Radford Care Group Centre for Care: www.radfordcaregroup.org.uk/. Not something I know of – but again impressive and entirely in keeping with all that Rob stood for and stood by.

    By our friends we come to know a bit more of ourselves.

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    29th May 2016 | By David Jolley

    Wednesday saw the death of a very frail relative who was in her 90s. After a full and productive life she had become less able and not coped living alone. Her final 6 years were spent in a Methodist Home for the Aged. Her family saw her to be happier in those years than they had seen at any time through her previous adult life. The company, the routines, the care – all complemented her own fading competences so that she could be herself – mischievous, flirtatious, opinionated, superior but generous and loyal. She valued the staff as friends and equals as in her earlier professional roles.

    The ending took ten days but was well organised and supported by the end of life team working with responsive GPs, the staff and family. It’s OK.

    The same day we learned of the sudden death by stroke of a colleague – of retirement age but still working on a part time basis. Same age as me – we were postgraduate trainees together and continued in similar work. He had experienced episodes of ill-health and had some ongoing pathology but was conscientious in healthy eating and exercises. The sudden death is a shock – it has to be that it is OK.

    The Law Commission is making steady and cultured progress in its task to suggest how to rewrite the legislation concerning people who lack mental capacity and are in 24 hour care. The present system has been exposed to be absurd, extortionately expensive and causes distress to individuals and families.

    Our 90 year old relative became subject to DoLS – amongst other things we were advised, in a formal note, that when she died her doctor could not sign a death certificate and her body would be possessed by the Coroner and would rest in a hospital mortuary until he had opportunity to conduct an inquest. Ludicrously but happily the DoLS became time-expired and was not renewed – so her peaceful, natural death in a place where she had found love was not spoiled.

    In their interim statement published this week, it is clear that the Law Commission is addressing the Coroner’s issue with what will be good effect. There remains mystery around the remaining complex considerations

    www.lawcom.gov.uk/wp-content/uploads/2016/05/mental_capacity_interim_statement.pdf

    We look forward to the final thoughts – and hope they will include reference to legislation of this area in other European countries

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    By David Jolley

    I remember the first time I encountered Wikipedia – 2006 and I was asked to support a submission to an essay competition by one of the trainees.

    I did not much like what he had written and wondered where he had obtained his material – I found he was quoting verbatim large sections of article from Wikipedia. I had the task of explaining I doubted this was a suitable source for an academic paper. Then there was the issue of plagiarism. We left it that he would not submit an essay but that I would not be reporting him to the GMC.

    Things have clearly moved on – I have become aware of a recent entry reviewing the life and works of Barbara Robb – main mover behind AEGIS, Sans Everything and the sequence of revelations and legislative change which did so much to improve the lot of old people with serious mental illness, including dementia, from the late 1960s. Sans Everything was published 1967 – next year is its 50th anniversary – surely time for celebration and sober reappraisal.

    https://en.wikipedia.org/wiki/Barbara_Robb

    Reading this has been light relief as we prepare for the assessment of John Leigh Park http://roundhoundcouk.ipage.com/index.html (don’t ask me why we have such a strange web address).

    For the first time in 10 years we are entered for recognition under the Green Flag Award scheme.

    http://www.greenflagaward.org.uk/awards/green-flag-award/

    It is a complicated business which requires effective collaboration between the sponsoring Local Authority – Trafford for us – and a Friends group – we are Friends of John Leigh Park. Extra complication is that all Trafford park work is now undertaken by Amey in an arrangement called One Trafford. So – many opportunities for misunderstandings and crossed wires. But we are getting there.

    Parks are wonderful community resources – open and free – countryside and playgrounds for all ages – often in urban areas. That is John Leigh Park in Altrincham. As health and welfare provision which is acceptable and well used, parks have the potential to improve health – physical and mental – A wonder Drug with little cost, few adverse effects and massive potential to save expenditure which follows the development of ill-health and unhappiness. We aim to be inclusive of people with dementia and others who have disabilities. 

    Never-the-less austerity measures have led to cuts which usually leave parks, along with museums and libraries, labelled as low priority when set against education and direct welfare services for the disabled. Somehow we need to find the right balance within the reduced capacity allowed, using voluntary work alongside professional contributions. 

    We look forward to learning more from the Green Flag exercise.

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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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