Back to the story of last Saturday. For those of you not in the world of dementia – Dr Shibley is a well-respected writer, tweeter and advocate of all things regarding dementia and Kate Swaffer, a person living with dementia, is over from Australia to promote her book. Kate is known as one of the leading authorities, gurus, campaigner, prolific blogger and known the world over.
The book launch event was being held in Camden. Shibley had kindly supplied a walking map which was a real help. It was only a couple of minutes walk from the tube station. I got to the venue early in the hope I’d have time to chat to them as I knew I’d have to dash off for my train at the end. Result, there were only a few people there when I got there. The wonderful Chris Roberts and his wife Jane were helping and then I said hello to Shibley. Kate was busy chatting but eventually saw me and came over to give me a hug.
I feel like I’ve known Kate for years – in fact it’s less than a year and only via her blog and Twitter as she lives in Australia – but we are all part of a very close-knit community. The 50 invited guests today were nearly all familiar names from Twitter – the wonders of social media comes into its own when you meet people for real. The marvellous Gp Jennifer Bute, who is also living dementia, was there and we had a lovely chat before the start. Needless to say we were armed with wifi access and I immediately started tweeting – just no stopping me!
Hilary Doxford – friend from the Alzheimers Society – also arrived and we sat together ready to be inspired. We weren’t disappointed.
Beth Britton from Twitter did the introductions – Shibley launched his book first – a very special day for him. His book covers many topics in detail. The highlights for me were:
- a quote he supplied by Ken Clasper (also living dementia) who often quotes people as saying ‘ You don’t look like you have dementia’ – I tweeted, that it begged the question ‘what are we suppose to look like!”
- He spoke of the lack of voice of consultation with people with dementia – how the 2002 ‘Forget me Not’ report had no voice from people with dementia and the 2012 ADI survey only included 6% of people with dementia
- Words can instill power – he then used the thought-provoking quote ‘paralysis by analysis’ when speaking about whether to use the term ‘ patient’ or ‘person’
- He kindly showed a quote from me – I had to give that slide a second glance as I wasn’t expecting that bit – very flattered
Shibley also has a strong opinion on the use of dementia support workers and favours Admiral Nurses – run by Dementia UK – he did end by saying there’s a place for both. I also think there’s a place for both. The expertise of Admiral nurses is needed but. Dementia support workers, are also key in providing support but only as long as they receive the appropriate training.
He strongly advocates a social model of care rather than medical model of care as it’s much more person centred than the medical model – quite agree Shibley.
Martin Rosser had given Shibley a stack of Join Dementia Research leaflets – I tweeted for everyone to consider signing up.
I’m sure Shibley book will be used and consulted upon in many arenas. He is so knowledgeable and his book a must read.
It was then the turn of Kate Swaffer – Kate has a book being published in the near future with the fab title of:
Kate is such an eloquent speaker – and here are a few of the highlights:
- She showed a slide of swans as an analogy of how hard we have to work just to stay afloat – when we stop for a holiday or break,it takes a great amount of effort to get back up and running – hadn’t realised until she said it but how true that is.
- She spoke of a great passion of mine – education – or lack of it for healthcare professionals
We wouldn’t employ unskilled people in business so why do we employ doctors and nurses who have so little skill and knowledge in dementia – they receive ‘minutes’ worth of training during their courses.
- She also spoke of the shocking questioning of hers and others diagnosis simply because they were trying to live life as best they can with dementia. How can clinicians question a diagnosis simply because you were trying to ‘outmanoeuvre this cruel disease’! Someone Kate knew was even accused of stealing her scans as they clearly showed she probably had Alzheimers yet here she was living positively – shocking, shocking, shocking……
- Language is key – a huge concern for all of us involved with dementia. Language can have a positive or negative influence on those diagnosed. The Press and media need to be challenged at every point where inappropriate language is used when referring to dementia.
Very early on I stopped typing as there was so much good stuff to tweet!!
At the end, after rapturous applause, Kate and Shibley had a question and answer session. Someone said how the NHS is restricted on changes it can make due to funding – it all boils down to money. My hand went straight up and I highlighted that changing language costs nothing. I said, as I’ve said so many times:
If positive language was used by clinicians it would change the confidence and outlook of the person with dementia. If clinicians provided strategies instead of telling us we were worse, it would give us something to feel positive about.
It was asked what steps could we now take back with us and Kate’s immediate response was ‘language’ as it’s a quick win and it costs nothing. Perfect. One thing that struck me is that Kate was banging on about things I’m banging on about years ago. That’s sad. I don’t want to feel like I’m banging my head against a brick wall – sadly Kate appears to have met the wall on countless occassions ahead of me…
There aren’t many people in the world who inspire me but Kate Swaffer is one such person. Meeting her for real didn’t dampen that opinion, it only served to consolidate. If you’re a twitterer and want to see the conversations from the day, search under #best2dementia📚s – it makes for very good reading.