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  • 14th Novemebr 2016 | By David Jolley

    I have missed a blog and feel badly about that. The days have run one into another and been full. My day at the Dementia Congress and the trip to Brighton told a story. First train was late to Altrincham but got us to Stockport with one minute to spare. I had a booked window seat beside the window. A beautiful day and time to watch the autumn going by, read the paper and just be sure of the things I should be doing, where and when during the day. Where am I going? Brighton Centre. Ah that’s not the hotel we have used on previous Brighton Days. Last minute text and I am reassured it is very near and a taxi man will find it for me. Euston a bit late and the down escalator is not working. Underground to the Northern Line. “All square on the Northern Line” I remember the words. And off I go to London Bridge via Bank. How often I travelled this in my first year at Guy’s from my hostel in Bayswater. Better décor at London Bridge these days and escalators rather than waiting for a lift or mounting the very long spiral staircase, generating heat and sweat, inhaling the dusty air.

    And London Bridge station, Look at you now! So many people, moving like rivers round and down and where are we going? Notices about The Shard. I had not realised it was stuck on top of London Bridge Station! Thankfully there were tall, friendly and understanding men in fluorescent yellow waiting at key points to shepherd the uncertain toward their platforms. At the lowest corner, the glare of lights was dimmer and there was the subdued entrance to the Guy’s Hospital which I remembered. Still the grubby London Brick and the simple but largish notice “Guys Hospital”.

    That strange feeling of “home”, albeit a home for a while and many years ago. So much to remember. So much to be grateful for. So lovely to hold those people who have lived with me in memory or occasional contact in the years since then. 

    Train to Brighton a bit late. Taxi driver who knew the way and talked about nonleague football, Wolves and Brighton. Got me there in time to the cavernous Brighton Centre which is just next door to the hotel and seemed to have little to commend it other than the familiar buzz of people, all pleased to be together and generous in their greetings to me! The signage, modern word! Was in Japanese as far as I could see. Thankfully there were tall men, not in fluorescent yellow, who rescued me repeatedly.

    The session I chaired featured reports, from excellent young women, on offering training in care homes, and identifying people with dementia, and Lewy Body Dementia in particular, in care homes. Alistair Burns was quoted several times. ‘Don’t let people with dementia in care homes fall through the net’. Well the projects were interesting and well thought through and presented. It is great that additional interest and resource is being focussed on care homes, carers and residents. My only question is whether a label of dementia is a great advantage to individuals in care. It could be counterproductive in changing perception of an individual from person to ‘a case of’. https://www.ncbi.nlm.nih.gov/pubmed/16252372

    Having got that far, I wondered what Tom Kitwood would have made of the Memorial Address in his honour from Arlene Astell, Professor at Sheffield and Toronto. Her title ‘Innovating in long term care’ did not warn us that this was to be a description and eulogy of the joy of computer and robot based care.

    People say that nurses in acute wards devote more time to their computers than to patients.

    I have learned since that the much valued morning address from a minister was again devalued by David Mowat, Parliamentary Under Secretary of State for Care, deciding to deliver his message as a read statement by video. Smart new computers can be reflective of responses from humans, but videos just tell you what you are to know and haven’t the capacity to listen or reflect on what you might have to say. Shame. I think there should be strong objection to this dismissal of our importance and the concerns which People in this country and the wider world, have for dementia and its human and economic consequences.

    Norman Lamb used to come and listen. He is still greatly respected. 

    It may be time to decide not to invite a minister unless there is a guarantee of a whole human being presence. 

    So here I am feeling annoyed, even wild about all this. 

    But then I know that we were able to outline the Dementia Conversations work at East Cowes and Bowdon Vale. And I found the JDC article from Bob Friedrich and Bob Woods on Dementia Friendly Churches.

    Then there is Jill Manthorpe and Steve Iliffe, in the same November December issue, challenging the wisdom and direction of the Dementia Strategy. 

    Not comfortable fireside reading. Out on the wild side again.

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    1st November 2016 | By David Jolley

    Eight days was the time the Beatles were devoted during every week. Every day needed 36 hours for the carers of people with dementia, captured in print by Nancy Mace and Peter Rabins 1981 and still selling and still true to life today.

    In his regular feature in the BMJ this week David Oliver picks up on one of Jeremey Hunt’s phrases from a speech at the Conservative Party Conference: ‘Let’s not argue about statistics’. Mr Hunt was pushing the case for ‘improvements’ to the Health Service – changes which are thought to be popular and justified by ‘evidence’ that current patterns of service are not efficient and may be responsible for poor outcomes for some people. One major focus is the press for seven day services. Hunt cites studies which say that people admitted to hospital at weekends have a higher mortality during the admission than people admitted during the Monday to Friday working week. David Oliver and others question the validity of these analyses, for the comparisons are almost certainly not of like with like. Oliver’s point is that we need to use statistics respectfully, listen to expert interpretations and perhaps always have a pinch of salt and our own experiences to hand before being railroaded along an uncharted track.

    Health care is available every day of the year and through every day. So is care from Social Services, the police, the fire service and others. Time, experience and an awareness of limitations of finance and personal resources lead to a delivery which is the best we can do and afford. We have become accustomed to do as much as we can during normal working hours, Monday to Friday 9am to 5pm but to have emergency cover available at all other times. That has been a tidy and accepted way to ‘cut our cloth’. The more generous and efficient the work 9 to 5, the less the calls for help at other times. Services which concentrate on emergency services are less satisfactory than those which put maximum effort into routines.

    We found it useful to have an answer phone associated with our Memory Clinic in Wolverhampton. The recorded message was the voice of a known and trusted senior nurse. She asked people to leave a message and their contact details and the promise, and reality was that she would be in touch with them at the first available opportunity. Not 24 hour everyday availability of full force service, but enough reassurance to make the situation bearable for most people. The Alzheimer Disease Society Branch provided a telephone help line which was available continuously. Someone to listen and share difficulties, and to point the caller with confidence and from a base of personal knowledge and familiarity in the direction of emergency services of they were really needed.

    I can go shopping at any time of the day or night on almost any day of the year, but the choice of shops is limited and even in supermarkets the choice of goods tends to be restricted out of hours. Banks, solicitors and other professionals have their defined hours of business, with emergency arrangements between times. I am not convinced that there is overall advantage in having shops open on Sundays. A little planning ensures that supplies are at home by Saturday lunchtime. In its own way this frees us all from the need to use up every day with basic activities to the denial of the time for rest, reflection and time for each other.

    Maybe we are being lessened by the lure of 24 hour access to instant gratification which is alternatively to be seen as unending pursuit of profit for a few by the exploitation of the weak.

    This is not an issue of numbers but one of values.

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    Brighton Days 24 October 2016 | Comments (0)

    24th October 2016 | By David Jolley

    The Journal of Dementia Care is probably the most useful magazine in the field, readable and lively it covers a lot of ground and makes reference to articles in more scholarly journals which we can look at if they seem to be relevant to our interests and current needs.

    But I have grown to love the annual Congress. It is my ‘must go’ professional event for every year. In this it has displaced the annual residential conference of the Faculty of Old Age Psychiatry. It has the advantage of being multidisciplinary and includes all the agencies contributing to the care of people with dementia and their families.

    The downside is that it is, inevitably, focussed entirely on the condition dementia. I worry that more should be done to hold together the care for older people with other mental disorders too. Perhaps this can be created out of the success we have here.

    I have been especially taken with the Congresses at Brighton which is a place like no other. From the first walk down from the station past people sitting at chess sets on the pavement, via reliving of times in The Lanes as a student, I have been a fan.

    There will be presentations to listen to and look at. There will be people to meet. We will grow strong again from the nourishment of spirits joined.

    Latterly there have been awards. This year it is wonderful to know that Dementia Pathfinders is linked to three entries shortlisted for awards.

    The impressive Joy Watson, who has been to one of our Dementia Conversations at Bowdon Vale, and hopefully will make this a regular date, is listed for her exceptional contributions as a person with dementia. http://www.salford.ac.uk/news/articles/2016/dementia-campaigner-joy-watson-honoured

    The Department of Health funded project supporting people with young onset dementia and their families must be a strong contender in its category http://dementiapathfinders.org/supporting-people-with-young-onset-dementia-and-their-families.html

    As will be the fabulous Dance for Life, a collaboration with Matthew Bourne's New Adventures & Re: Boirne


    The span of these entries demonstrates the range and flair which Dementia Pathfinders can exhibit, still so early in its development and with such modest finance. So much rests on the initiatives and vision of Barbara Stephens. It is a credit to her and those closest to her that recognition like this is being achieved. Winning is infectious and may help validate more of the work of our fledgling organisation.

    We have 15 minutes to outline the origins and experiences of Dementia Conversations. I believe this is something which should and could be part of every town and village. It is a way, perhaps the way, to bring power and satisfaction back to grass roots. This is a chance to set the ball rolling a bit further and a bit faster.

    Brighton. What better place to do it!

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    Rage, Rage 24 October 2016 | Comments (0)

    16th October 2016 | By David Jolley

    When I was a medical student and attached to one of the first specialist services for older people at Severalls Hospital, Colchester, I was excited to see the openness of that hospital to new ideas. This included better accommodation, and wards and areas of the grounds where men and women could mix and live together as they received their treatments.

    It also included the practice of going to see people at home as soon as they were referred for help. This was initiated through the vision of Dr Russell Barton, interpret in practice by Dr Tony Whitehead.

    A little while later I read and heard Tom Arie, doctor at the time but professor before long, describing his experiences when applying the same principles: Go to people when and where they are in difficulty. Show them that you care about them and have understanding of them, their circumstances, strengths and their problems and will work with them to find solutions. Follow things up over and again as needs change, supports fail and additional considerations appear.

    These approaches transformed prospects for people with dementia and other mental disorders of late life, from avoidance, rejection and dumping – to a waiting list or long-stay ward. The service would work with people and families and with other agencies using their own home as the base. Together we would see things through to death.

    Tom Arie in Goodmayes had responsibility for a catchment area which included 40,000 older people. He worked alone until the appointment of Elizabeth Taws. When I began the service in South Manchester in 1975, my catchment population included 30,000 over 65 years. I carried it gladly until we found money and had trained sufficient doctors to take on similar patches in the North West and beyond. Five years and we dared to appoint a second consultant to this teaching and researching service. Every new patient was seen at home within a matter of days of referral. Communication was direct to me via a secretary. We shared office space and we linked effectively with a community team which began with one social worker and two CPNs. Letters were typed on typewriters. Letters were sent to GPs after every contact and most contacts were to people in their own homes.

    Tony Whitehead and Tom Arie showed they could see more people by this approach and reduce the reliance upon beds. In South Manchester we had very few beds – The task was to survive without too many disasters. We did, thanks to domiciliary practice. 

    I understand the specialty of Old Age Psychiatry has lost its love for this, its cardinal characteristic. Consultants are too hard pressed to take time to see patients at home. Strange that we are so hard pressed when the number of consultants has risen and risen and catchment populations of 40,000 or 30,000 would be laughed out of court.

    Time to be spent on recording activities in a way that can be handled by computer systems. Yes – all well and good – but information is collected for the benefit of patients and families if it is to be justified at all.

    Time to be spent reading brain scans? Maybe – but this is not where clinicians achieve the greatest effect in caring for people.

    Time spent in clinics rather than in homes and on the road. We did find working with a Primary care Clinic at Gnosall was rewarding and effective – because it was close to home and shared with the regular medical and nursing staff who know individuals and families. The DNA rate was almost zero, as it is for domiciliary contacts.

    Clinics at hospitals are heartless, wasteful of the time of patients and families. They may soak up ambulance time or other commissioned transport and almost always attract a higher DNA rate.

    Inheriting such an arrangement when I returned recently to South Manchester I was told by one patient and her family:

    ‘It is so good that you have come to see us at home. We were missing appointments at the hospital, frankly because it took up a lot of time and was not a comfortable use of the day. We did not feel the people took interest in what was important to us: checklists and measurements are meaningless to us when we want to talk about real difficulties and some of the good times. Coming here you can see how we are living. You show appreciation of what we are doing and that means a lot even if you cannot make big changes for us. We know this is a shared journey.’

    The development of Psychogeriatric Services, like Geriatric Services before them, shone light and hope into places which had been dark and hopeless. Working with people in their own homes was, and still is, the essential technique which opened the windows and doors.

    Please let us not lose all this out of regard for the needs of computers, and the service based, fragmented pseudo-logic which insists on dealing with a living system as if it were a machine. For if we do, we will be no longer the vital presence which changed the world for people with dementia and their families. 

    Do not go gentle into that good night

    Rage, rage against the dying of the light

    (Dylan Thomas of course)

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