• A day at the 10th UK Dementia Congress in Telford: ‘The Minister should know….’ 09 November 2015 | View comments

  • 4th November 2015 | By David Jolley

    Could it really be ten years since the launch at Bournemouth? Sue Benson is unchanged as Mary Poppins, Richard Hawkins is steady as a star to steer by. Every year brings new ideas, new hope and new revelations. By the end of this first morning I was full and pleased to know I must use all this.
    The drive down from Altrincham via the M6 and M54 was good preparation. Although I know Wolverhampton like the back of my hand, I have never known Telford so was a little fearful of how to get there and what I would find. Traffic flowed well. Signs were there as advertised and a friendly man in yellow corrected my last gasp diversion from the true line. Easy parking. Light rain and mist set this as an autumn adventure
    The Early Bird blew me away – I knew the Tameside presentation from Ursula Humphreys – a Public Health doctor leading a surge on Arts for Dementia – would be magical. It is my privilege to be near to Ursula and her transforming crew via involvement with Willow Wood Hospice and our regular Dementia Network meetings. But Mosely Hall Hospital matched that with its exploration of Life Story and the production of a play based in true stories, mixed with a composition of a couple reflecting on life: ‘All of me’. 500mpeople came to see it and 500 people loved it.
    But more even than these I was carried to new understanding and new determination by Veronica Franklin Gould: Music Reawakening: http://www.arts4dementia.org.uk/reawakening-the-mind-report Did she sing it? She did not – but her presentation had the lifting power of music, blowing away any irritating thoughts of red tape and burdensome routines: here is how life is taken to new heights – for mere mortals with or without dementia. We must share this as the very best of gifts to those in need and those whose lives will be richer for it
    Overwhelmed/Gone by 9.30am!
    Disappointment then that the Parliamentary Undersecretary of State for Public Health was required to stay to vote in Westminster and could only offer a pre-recorded rehearsal of statistical claims of achievement. Unlike her predecessor Norman Lamb she would not see or hear the exquisite contributions from people with dementia and from carers:
     ‘Going to the memory clinic was awful – the consultant did not stay to give me the diagnosis or to explain the condition. His fist communication to me as he passed me on his way out, was to say ‘You should get on and write a will now while you can’.
    Or – ‘It took weeks of tests and examinations – then this lady doctor who I had not seen before simply said: ‘You’ve got Alzheimer’s disease. I will write a prescription and we will see you in six months’ time’
    So much for making the diagnosis well!
    ‘I have dementia. I don’t suffer from it’
    ‘We need more hospices’
    ‘I can keep to the script with the help of my Ipad - Without its direction I stray to other things such as ‘Strictly’
    ‘The Occupational Therapist was wrong footed – She had never met someone with dementia still in full time employment’
    Let us hope that Jane Ellison knows a bit of what she was missing from that plenary session.
    People are asked to send her short statements: ‘The Minister should know…………….’ The Alzheimer’s society will forward them
    There is more to say about this wonderful day

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    Mark Wilberforce Created on 14/11/2015 14:07

    Nice to read your blog.  Conscious I'm only drawing on the sour note in what you heard... but I took a phone call this week from a gentleman recently diagnosed, who similarly was told by his consultant (at the point of diagnosis) to make provisions for his estate, finances, wills, because of its terminal nature and quick thievery of mental abilities....He said he felt he should get measured up for his coffin there and then.  Fortunately he has since managed to frame his diagnosis quite differently.

    David Jolley Created on 15/11/2015 20:02

    Thanks Mark - my sadness and anger is that professionals dare to retreat to a white coated model which sees the prescription of pills and once and for all advice as 'job done'. The wonderful messages from Telford are, as for your , that there is more to life than that. We must help people to be strong and to continue giving and receiving love and joy by all means with dementia or without

    Phil Jennings Created on 16/11/2015 07:01

    Great to read about some of the good stuff that's going on. I think memory clinics  only scratch the surface of what people living with a dementia and their families need. Within our limitations though, it is crucial that what we do, we do well and there are few more important stages of the journey, I would imagine for a person with a dementia than the sharing of a diagnosis. Sad to read the experiences of the people quoted but great that there are forums where these experiences can be heard and hopefully learned from.
    Look forward to your next blog!

    Ian Greaves Created on 16/11/2015 09:18

    I have been a GP for nearly 40 years and have always tried to care for people registered with me. I try to be the best doctor I can but even when I cant cure or solve problems I still support care and walk with people who are in distress. This applies to all things people bring to my door including dementia. Giving a name to a condition helps with our understanding but most of my work is after diagnosis and supporting both the patient, the family and all who are involved. I live in the area and over the years a mutual respect and accountability has developed. So I believe diseases where the medical interventions are limited and require little technology or complex interventions, the care needs to be in the community and kindness matters. If this was the guiding principle then surely this is a flagpole that we can all muster around.

    David Jolley Created on 17/11/2015 12:46

    Many thanks to Phil and Ian - Wise words from wise, kindly and dedicated men. The task for Memory Clinics, I think are to be aware of strengths and weaknesses in the locality and to work with others to make best use of what is available and make good the most obvious deficiencies. Being around for a while, getting to know people and becoming known are essentials. Ian, like other GPs, is a massive figure and reference point in the community he serves. That is why things work so well - through mutual respect, knowledge and trust. The Gnosall model of Memory Service should be adopted everywhere: www.gnosallsurgery.co.uk/clinics-and-services.aspx
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