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  • 23rd May 2017 | By David Jolley

    On Friday I found myself travelling to Oswestry. This is not a town I have known in the past. The invitation came to me from Dr Fiona Hay, a General Practitioner based in Much Wenlock. She has been interested in the work at Gnosall with the charismatic Dr Ian Greaves. I think this outing fell to me because Ian was already committed elsewhere and Susan Benbow is also tied up on Fridays.

    The journey took me along the M56 to junction 15, turn left and travel south via Wrexham, in Wales, and out the other side towards Oswestry on the A483.

    The study day had been organised by Dr Hay and her colleague Alison Whitelaw at the Robert Jones and Agnes Hunt Orthopaedic Hospital www.rjah.nhs.uk. This is an impressively bright, clean and lively hospital with many volunteers. We were to use the splendid conference centre.

    The day was styled to be of interest to professionals in primary care, working with individuals with dementia and their families.

    There was a good turnout of committed and engaged women and men. They were vibrant after an inspiring morning which they referred back to in discussions. 

    Andy Lowndes from Playlist for Life had shaken them into action and moved them with music from the very start. https://www.playlistforlife.org.uk/aboutus/meet-the-team/#3106

    This is about living with dementia.

    George Rook had shared some of the activities of Shropshire Dementia Action Alliance. Wonderful to know that there is an effective alliance here. The equivalent in Trafford seems to be dead after two meetings. http://www.dementiaaction.org.uk/who_we_are

    There had been sessions with a Memory Outreach Nurse, staff from a hospice and Dementia Friends. The buzz was palpable, if buzzing can be felt as well as heard.

    I came in from a cloudburst of rain and through a funnel of jammed traffic on the last stretch of the A483. I was just in time to catch the whole of Min Stackpole of St Christopher’s, sharing her vision, sharing her caring, sharing Namaste. http://www.stchristophers.org.uk/care-homes/research/namaste

    With Ann Regan I had been uplifted by a visit to St Christopher’s when we were preparing for our dementia service at Willow Wood Hospice six years ago. Min was one of the people we met on that day and she continues to develop the work and share the vision. Hearing it again, I was again lifted high.

    Deborah Alma is a poet recruited into the field as a resident poet to care homes in Worcester by John Killick. She does it well and has extended the concept. We were mesmerised and transformed. https://emergencypoet.com/

    Then Helen Rodenhurst from the library service exhibited the range of activities which she and her colleagues use to engage people with dementia and their families and professional carers. She also suggested useful reading for individuals with dementia and for their families. http://shropshire.gov.uk/news/2017/02/shropshire-libraries-to-extend-shared-memory-bag-scheme/

    It was so lovely to hear her positive commitment to this work and to know that in some areas of the country the potential and power of libraries is still valued. In Trafford the message is that many professionals have been lost and the work falls to willing volunteers. I must check how much tailored activity for people with dementia they find time and talent to undertake.

    I told the tale of Gnosall, in the context of changes in services from mental hospital to primary care over 50 years. Dr Hay shared something of her own work which uses the principles of Gnosall and which is effective and improves standards and satisfaction within her practice. More effort, but more rewards she would say.

    How fabulous to taste all this on a day out in England the other side of Wales, through the rain and a funnel of traffic.

    I came home cross country.

    I passed a roadside notice advertising Car Share in Shropshire. https://carshareshropshireandtelford.co.uk/

    Pinch me. All this is real.

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    15th May 2017 | By ​David Jolley

    I have pretty sternly kept weekends for family through the years, trying to keep some sort of balance in life. Being retired, of course, I can and do, have more time around during the ‘working’ week of Monday to Friday.

    So, this Saturday was given over to a study day at Luther King House in Manchester. Luther King House is an educational centre and an oasis of peace, green and trees in Brighton Grove tucked away just north of Manchester Grammar School and East of the Wilmslow Road.

    This day was ‘Dementia Friendly Church’. It was not an Alzheimer’s Society event, though the ‘Dementia Friendly’ tag is almost their copyright. This was people of faith coming together to share ideas about improving understanding of dementia amongst memberships and congregations and using the power and resources of churches for the benefit of people with dementia and their families and carers.

    Gaynor Hammond is a charismatic Baptist Minister, one time nurse, and great enthusiast and champion for people with dementia and their families. http://fiep.org.uk/2015/10/09/gaynor-hammond/

    She led sessions on the characteristics and nature of dementia, spoke about approaches to make communication with people who have dementia less difficult, and we used her workshop to look at planning dementia friendly services.

    The group included people from several denominations and from Wales and the South as well as Greater Manchester and the North. Predominantly women, there a reasonable presence of men amongst the 20 plus who were assembled. There were several ministers, lay preachers and everyone was volunteering and trying to provide help for people with dementia – mainly older people of course, but people with early Onset Dementia were mentioned by friends from the Midlands. Our age span I would hazard as 30s into the 70s.

    Many shared their personal stories of struggling within family with the challenges from parents or relatives of the same age, friends or parishioners, who have become changed by dementia or a related condition. This was impressive and said that this is something very real and not an easy fix. No room here for glib answers to everything you might meet.

    Sally Ferris led the workshop on setting up a dementia friendly group,  www.togetherdementiasupport.org/author/sallyf/. The structure of the day meant I was not able to attend but the murmurs were that this was helpful.

    Margaret Turner led the workshop on supporting carers of people with dementia. There is recognition that stress on carers is great, but they often feel that no one sees their difficulties, being so taken up with the changes on the individual with dementia. She helped us look at the statistics and economics, but also asked how we can be more helpful and supportive.

    It is wonderful to find that churches and church people are taking these matters seriously and taking a positive approach rather than ‘head in the sand’.

    All denominations have a membership skewed to older people and so include many with dementia or caring for someone with dementia. This may not be their only difficulty, multiple pathology and social and economic challenges are almost the rule. The spiritual dimension of being older and encountering changes to what you can do and the limitations which these bring, the need for the grace to accept help from others, cries out to be recognised and needs careful, sympathetic but realistic grappling.

    I hope we can bring these lessons back for consideration in our churches – opening the doors for frank discussion of needs within the membership – and prospects for engaging with others who might benefit from joining us.

    Everyone present has already begun some practical work aiming to help people with dementia. This is all to be affirmed, retained and worked on. We will learn from each other. Living with dementia is the norm for us. This is OK and will be the better and less dangerous as we accept it.

    Within our own Circuit of four Methodist Churches we are blessed with a comprehensive pastoral care system and it is beyond this that we will continue our monthly Dementia Conversations – recently summarised in the newsletter of Christians on Ageing – number 49 May 2017. In addition, our Timperley Church has begun a weekly drop in and there are other initiatives under consideration.

    From this Saturday’s work, I hope we will take steps to include consideration of people with dementia in issues of design and layout of facilities, the way we conduct ourselves with others, and look to making all services easy for people with dementia. The idea of making occasional services especially suitable for people with dementia feels to be something to explore. In our workshop, you could feel the dawning of understanding and the light of surprise that these could become red-letter days for the calendar.

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    8th May 2017 | By David Jolley

    We knew the days of the week by the food on our plates as we gathered around the dining table. Sunday roast. Monday, Tuesday, Wednesday some version of the meat reused. Meat was usually lamb, pork of beef in that order. Chicken was special and reserved for Christmas and other high holidays. Thursday came with sausages and mash. Friday became smoked haddock, and Saturday liver and bacon. At scout camp, I was the only one able to cook liver and bacon. The way we did it, this was a treat, floating on a bed of onions and gravy. The mashed potatoes all but dissolved in the brown swirl.

    So, culinary wise Friday was, and is, fish. But there is more to Friday.

    On the one hand, it is often the day the angels entertain themselves by throwing ‘rather difficult’ problems at me, and probably you, one after another or three at a time.

    Bill has set off from his home in Chorlton, muddled and bemused that the bus station has moved but determined to get to his sister in law in St Anne’s. Somehow he has got there and knocked on the door of the current owners of her former home. She died three years ago. We somehow need to make him safe and return him home.

    Edith has struggled through the week with daily visits from her CPN but cannot face the weekend ahead. She feels she has become useless and a burden to her family and to us.

    A younger man, unknown to services, has attacked children in a playground, injured a teacher as she defended them and he is now hiding somewhere in a block of flats.

    The only thing to do is to accept that these things will happen, especially on Fridays, and we must not object but do our best to help. There will be an end to the day.

    Our colleague Richard Stevens, whom we met through a mutual interest in the possibility that professional footballers are more prone to dementia, has found that cursing it all may give us strength to copehttps //www.earth.com/news/swearing-helps-cope-stronger/

    Interesting but not in keeping with my personal experience. Over aroused I become frantic, make bad decisions and spiral into defeat. ‘Keep Calm and Carry On’ seems to work better.

    But the other side of Friday is the chance to take a breath and put things into perspective.

    Despite all the pressures of the week we set aside two hours every Friday in the early days of the South Manchester Psychogeriatric service to look at things, reflect and make plans. This is where the research with David Wilkin and Beverley Hughes was conceived, refined, improved and delivered.

    Fridays at 4pm in Wolverhampton was tea at Beatties with colleagues from Social Services and anyone else who would join us. It was an impossible task. We had an impossible dream. It worked, inching forward week by week, adjusting in the light of reality but getting there.

    Fridays now are times with colleagues who are still working within the NHS and university. It is wonderful to hear these good clinicians talk with depth of knowledge and concern for their patients, the families, and colleagues in other agencies.

    There is so much which makes you feel the world has lost its senses. Here we have it that sense is around. It is having its impact and it is being strengthened by sharing, quietly, in confidence that observations and experience at the coalface have the power of truth. Still learning.

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    2nd May 2017 | By David Jolley

    John Harris’s piece in the Guardian on Saturday reminded us that it was May 1967 when we first heard Sergeant Pepper. The sound has haunted us through all these years and the image of the record cover is amongst the most recognisable ever, and everywhere.

    I remember it as a warm summer. I was in the upstairs sitting area at Severalls Hospital in Essex near Colchester. One of the other residents in the nurses’ home had brought the record eagerly from town and we shared its marvellous difference. There had never been anything like it before. It was a step into another world of music and how it could be presented.

    I was at Severalls for a month ‘special’ placement within my course at Guy’s. I was drawn there by a lecture from Dr Russell Barton, its charismatic Medical Director. He had come to Guy’s as a guest lunchtime lecturer at the invitation of Dr David Stafford Clark who was the senior psychiatrist at Guy’s and played an important role in demystifying and destigmatising mental illness through pioneering television broadcasts.

    Russell Barton was not a privileged teaching hospital consultant like most of the other guest lecturers. He worked in a county asylum or mental hospital, Severalls. He told us of life there, of the enormous numbers, over 2,000 who lived in large and deprived wards, set apart from the community and segregated, men from women, by buildings and exercise gardens which were secured by bars. He told that he believed much of their disability could be blamed on the effects of an imposed routine of institutional life. He had called this ‘Institutional Neurosis’.

    His earlier experience included working with prisoners of war and he likened the effects of mental hospital life to that of starvation and brutal humiliation meted to prisoners detained by the enemy during armed conflict.

    Taking down the bars, allowing men and women to mix and to be involved in meaningful work and social activities were his armoury for therapy amongst the inmates of Severalls Mental Hospital. It was captivating stuff, inspirational.

    All this was happening just a few years after the 1959 Mental Health Act had made it legal for individuals to be treated in mental hospitals without certification. Effective antipsychotic and antidepressant medicines were being used. They and electroconvulsive therapy had demonstrated that physical treatment, alongside humane social and psychological therapies could return individuals to health from many of the disorders which had filled Severalls and county asylums throughout this and other countries.

    It was a time of optimism and concern for fellow human beings. Sergeant Pepper was an anthem to all this and the freedom of thought and compassion which characterised the years of recovery from the trauma and learning of the Second World War.

    We came to know Lucy in the sky and lovely Rita, and ‘she’s leaving home’. Some thoughts on the lives of young women. Mr Kite, fixing a hole, and musing on life at 64, when I get older!

    And during that time at Severalls I saw what Dr Russell Barton and his colleague Dr Tony Whitehead were achieving for older people with chronic mental illness and with dementia. There were no effective physical treatments for dementia, and the impact of phenothiazines and other medication on those who had lived with active schizophrenia for four decades or more was not impressive. What did help were the humane improvements in the quality of furnishings, clothing, food and activities within the hospital. And for old people not yet in hospital, there were active outreach teams to visit them at home or in care homes or general hospital. This was a glimpse of a future that we have all benefitted from.

    At the time I was not much aware of the earth-shaking political initiatives led by Barbara Robb, but strongly supported by Russell Barton and Tony Whitehead. Perhaps they thought that concentration on the clinical work was best and the politics too dangerous for a young student. I guess they were right.

    But this was an extraordinary time, fifty years ago today!

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