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  • Following on from last week’s comparison of the care received by people receiving a diagnosis of cancer, with the perceptions of people receiving a diagnosis of dementia, I was drawn to Fay Schopen’s thought provoking commentary in the Guardian las Friday (6.10.17).

    ‘Cancer patients need more than survival. The hunger for ‘miracle cures’ has skewed medical research and made us forget that quality of life is key’.

    She has lived with a diagnosis of cancer for six years. Part of her commentary relates to this personal experience – the giving and receiving of the diagnosis – but mostly the life she has been leading since, most particularly the impact of medicines. The medicines have helped with some symptoms, but produced many others.

    Putting her personal experience into context, she refers to the papers in this week’s BMJ which are triggered by Davis et al’s retrospective analysis of cancer drugs introduced to practice 2009 – 2013. Davis et al. Availability of evidence of benefits on overall survival and quality of life of cancer drugs approved by the European Medicines Agency 2009 – 2013. BMJ 2017; 359:j4530

    Of 68 new drugs approved, only 39 had good evidence of their effectiveness in moving survival or quality of life. After a median of 5.9 years of their use only six of those 39 had improved survival or quality of life. Amongst these six, improvements were mostly ‘marginal’ when compared with longer established treatments, but were much more costly.

    How can this be?

    People are so desperate for a cure, so keen to receive the latest ‘breakthrough’ therapy that moderate and sensible criteria are swept aside. Even Fay Schopen betrays a lingering hope/belief: ‘If you are surprised by what seems to be a devastating failure of medical research, so are scientists.’

    There have been advances in the understanding and treatment of many cancers. We surely cannot be surprised that gaining even more ground is difficult – and it may never happen.

    Living with that understanding makes for a manageable task. Fay Schopen concludes that quality of life within the available months or years is the most important consideration. This must be the case in all circumstances – of illness and of health. The impact of specific therapies may be significant, but it will always be but one component of the equation: inheritance, constitution, lifetime experiences, current social and psychological circumstances, spirituality and faith, not to mention other pathologies, will all have sway.

    Fay Schopen dismisses the metaphor of journey through illness: ‘something I have no truck with whatsoever.’ That puzzles me because I find the concept of life as a journey helpful and productive. I wonder what her alternative is.

    In this context it is important because the surest way to gain best quality from years with or without illness, has to be to travel with the benefit of a competent guide. For most of us, travelling in company with likeminded friends, in familiar places and with favourite music, pictures, foods, dance and such will make it good as can be.

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    More like us 03 October 2017 | Comments (0)

    3rd October 2017 | By David Jolley

    This week we met with Fabulous Forgetful Friends, a group of people all of whom carry a diagnosis of dementia and variable but generally mild to moderate impairment.

    They meet under the umbrella of Together Dementia Support www.togetherdementiasupport.org/ They came to say something about their experience of services, including the process and practice of ‘diagnosis’ and its communication to an individual and family, but also to comment on the availability of support in a life with that diagnosis.

    Several have experience of cancer – either themselves or through a close relative or friend. All declared that they saw much better, closer and responsive work with the symptoms, investigation, diagnosis, treatment and aftercare relating to cancer than to dementia.

    We are shamed. 

    The essence of the problem is that within Manchester, the model is for individuals with possible dementia to be referred to specialist services for investigation and decisions about diagnosis and what is to be done for the future. This is the same model as that for people who may have cancer.

    But whilst people with a confirmed diagnosis of cancer remain under the care of specialist services – doctors, nurses and others – people with a confirmed diagnosis of dementia may experience close and excellent support in the diagnostic process, though our Fabulous Friends told us even this was not always the case – ongoing support is available to very few. The expectation is that Primary care will take over ‘once the symptoms have stabilised’.

    This denial of the need for continued and connected support is hard for individuals and families to accept.

    This is quite right – and they should not accept it, nor should service providers, commissioning organisations or responsible politicians.

    A problem for individuals and groups like Fabulous Friends is to find relevant and effective listeners.

    It has to be that Primary Care and specialist services agree a responsible way of working which does not leave patient and GP feeling they have been dumped by the specialists. The group believes this is achieved in some areas of the country but not everywhere and not here.

    Committed and coordinated healthcare is felt to be a priority provision. From here the best use of family and other support can be negotiated, though the fragmentation of services between the local authority, independent sector and voluntary groups – all competing for inadequate funds – does not make this a journey which can currently be followed with confidence.

    It is encouraging to find that patients and carers are finding ways to support each other and make their observations known through groups which are nearer to their lived reality than the Alzheimer’s Society and Age UK which are much respected but have become detached from grass roots.

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    25th September 2017 | By David Jolley

    Claire Hilton came to us in Manchester as a GP trainee. She was not sure of her future for she was clearly a gifted and able doctor but also had a love and training for a career in history. Work in Manchester persuaded her to stay with psychiatry and to specialise in the care of older people. Her qualifications extended beyond the basics to include an MD from a study of mental health amongst people with Sickle cell disease. More recently she has been awarded a PhD for her studies in the history of services for older people with mental disorders. Her publications are many, they reflect her scholarship and her passion for her subject. Amongst other things she rescued the newsletter of the Faculty of Old Age Psychiatry from a period of neglect so that it began to appear regularly with a fulsome content of high quality communications from clinicians, trainees and senior experts. Claire has moved on from this but her legacy sees the newsletter continue to thrive.

    SShe has been a dedicated and effective, much respected and loved clinician and teacher. Recent years have seen her devoting more time to researching and cataloguing the development of services for older people with mental health problems. In doing this she has forged valued friendships with significant characters and their families, confirming respect and thanks for what has been done, often at considerable personal cost. The Witness seminar which she organised in Glasgow 2008 reassembled friends, colleagues and combatants who had made bricks with little straw to lay foundations which has become a world-wide movement. Those of us who attended will never forget the seminar, nor the fury which it reflected on www.gla.ac.uk/media/media_196526_en.pdf

    Now we are privileged to read her tribute to Barbara Robb – and hopefully to see this wonderful woman properly celebrated and recognised as a figure to stand alongside Marjorie Warren and Cicely Saunders as household names: heroes who have changed our thinking and brought heart to areas which had been neglected and generations of suffering experienced.

    ‘Improving Psychiatric Care for Older People’ is now available – published by Springer. It is possible to download it free https://link.springer.com/content/pdf/10.1007%2F978-3-319-54813-5.pdf

    Most of us will want to buy the hardcopy to read and to share with others. It tells the story of a talented woman whose original ambition was frustrated by injury. It tells of her conversion to become a therapist, and her links to great psychotherapists who were captivated by her charm. It tells of her sensitive commitment to friends and patients and her outrage at the disgraceful brutal regimes they were exposed to when they needed expert care and treatment. We learn of the reluctance of the establishment to believe her and other witnesses, but the bravery and persistence of Barbara Robb and key individuals in politics and medicine.

    The truth would be told. It was. It is here.

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    Moving spirit 19 September 2017 | Comments (0)

    18th September 2017 | By David Jolley

    This week the Guardian carried a story of research which suggests that sitting for long periods without interruption is associated with early death and morbidities on the way to death https://www.theguardian.com/society/2017/sep/11/moving-every-half-hour-could-help-limit-effects-of-sedentary-lifestyle-says-study

    It is a long time since Professor Jerry Morris reported the different life expectancies of bus drivers (who sit) and bus conductors (who don’t) www.epi.umn.edu/cvdepi/study-synopsis/london-transport-workers-study/. It was a classic study which confirmed that being active is a powerful preventive medicine. The most recent study does no harm in reminding us of this.

    A very simple arrangement leads us to host a weekly walk on our park. We meet at the bowling pavilion and walk for about an hour, then have a cup of tea and simple refreshments whilst putting the world to rights and sharing news. Our walks attract about ten people most weeks. Most are ‘getting on’ and/or have some sort of pathology. These may include dementia – we are ‘dementia inclusive’, not ‘dementia exclusive’.

    We are part of a network of such walks loosely organised by Walk for Health: www.walkingforhealth.org.uk/ The initiative for this came from Macmillan nursing out of their understanding that walking improves life and life expectation for people with a diagnosis of cancer. As for cancer, as for dementia, as for life with or without any pathology.

    A marvellous development in Trafford, has been the initiative of one General Practitioner in Sale Moor. She invited all her most vulnerable/suitable patients to join a weekly walk from the clinic building. Over 100 came the first week – this has settled down to about 30 regulars – but how wonderful this is. The links between a voluntary initiative and our brilliant Primary Care services is a magic model for the future.

    The hope is that other Practices will follow her lead – We will try to monitor the success and the impact which this makes on the physical, emotional and cognitive health of the people – and their need for services.

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