September review: learning and sharing

September seemed to be a relentless succession of exhibitions, conferences, talks and presentations, large and small, for Mycarematters founder Zoe Harris…

“From the Georgian splendour of the RSA to the cramped office of an NHS ward for the elderly, and everything inbetween, it’s been a month of learning about some of the fabulous work that is going on in health and social care, and sharing my aspirations for Mycarematters with large and small audiences.

“One of the highlights of the month was the NHS Health and Social Care Innovation Expo. This is a huge event presenting that inevitable dilemma of which of the numerous simultaneous presentations to attend. I could only be there on one of the two days, and the event I was most disappointed to miss was the presentation of the Kate Granger Awards. I had a heart-warming exchange of emails with Kate, founder of the #hellomynameis campaign, after her talk at the NHS Confederation conference in 2014, where she referred to her four core values:

• Communication
• It’s the little things
• Person-centred care
• See me, not just my disease.

“So obvious, so important, so often missing… particularly in our care of older people. I went on to read Kate’s two provocative and moving books, reviewed here. Kate died seven weeks before the 2016 Awards, the world is a poorer place without her.

“A meeting I always enjoy is the dementia working group at Sussex Community NHS Foundation Trust, chaired by dementia lead Lucy Frost. Lucy brings together a variety of professionals and people with experience to ensure the Trust is doing the right things to provide best support for people with dementia, and their carers. I attend in my capacity as an ex-carer and there is always another carer, and sometimes the person they are caring for, in attendance as well. The professionals clearly value and respond to our input, and I’ve never felt we are invited for appearances’ sake. But then, with Lucy in the chair that’s hardly surprising. Her passion for delivering high quality care to people living with dementia is relentless.

“There were a number of excellent presentations at an event called Understanding Dementia, hosted by University of South Wales in Pontypridd, where we had accepted the offer of a stand to raise awareness of Mycarematters. Perhaps the most memorable speaker was Karen Kitch, who lives with dementia, aged just 53. Karen relies on her phone as a backup memory, creating reminders for everything she has to do. The award-winning Private Eye cartoonist Tony Husband has that fabulous knack of being able to entertain his audience whilst informing them at the same time. Tony shared stories about his Dad’s experience and the book it inspired: “Take Care Son: The Story of my Dad and his Dementia”.

“Later in the month I found myself in the impressive surroundings of the Great Room of the RSA. It was in that very room in 1877 that RSA fellow Alexander Graham Bell gave the first practical demonstration of the telephone, but on this day we were debating the NHS initiative: Health as a Social Movement. ‘NHS England and partners will develop, test and spread effective ways of mobilising people in social movements that improve health and care outcomes…’ I applaud the sentiment, but surely social movements are spontaneous events, springing up from the grassroots, instigated by individuals who care enough about something to try and make it happen. Can a successful social movement really be initiated from above? Consider Kate Granger’s #hellomynameis campaign… surely that’s a social movement if ever there was one.

“Nevertheless, it was a privilege to hear from Jos de Blok how he has grown his Dutch homecare organisation Buurtzog in the Netherlands from 4 nurses in 2006 to the current  10,000. His model has attracted a lot of interest in the UK and appears to have a whiff of Marmite about it, you either love it or hate it. And Helen Bevan is always an inspiration, with her impassioned call for disruptive co-creation and assertion that ‘large diverse groups make better decisions than smaller groups of experts’. Helen’s talk brought to mind a book I read a while ago called The Wisdom of Crowds by James Surowiecki. Thought-provoking stuff.

“I was invited to speak at Community Care Live 16 about my experience as a carer for my late husband. I’ve been doing similar talks for a while now; Geoff’s experience of living with dementia could have been much less painful if I knew then what I know now, and if I can share some of the knowledge I gained with people who are attempting to support others in that position, it might help them avoid some of the pitfalls.

“That’s just a flavour of the numerous events that took place in a particularly crowded month. Occasionally I get troubled by the possibility that the people who attend the vast majority of exhibitions and conferences are not the people that really need to be there… they already have a desire to learn and improve their practice. It’s those who never go to such events, who are not exposed to new ideas and thinking, who most need to be there. Twas ever thus, I suspect.”