Some of my friends – and indeed, if the truth is told, Mr Whose Shoes? himself, wonder why I am so captivated by Twitter. It is a ‘no brainer’ …. I find it exciting! Twitter is so fresh and immediate – so easy to “dip into” and learn, so easy to link up with great people across the country – and indeed across the world! We exchange news and views, share breakthroughs and innovative work. We hold up a very public mirror to poor practice which can quickly turn into a campaign to support someone who is suffering or being treated unfairly.
Add in a bit of blogging, including inviting (in my current “in my shoes” series) other people to blog, and it all adds up to a fascinating whole.
I love seeing the flow of ideas, truly democratic – people linking up and “following” others not because of some paper hierarchy but because they have something interesting to say. And normally a bit of passion behind what they are saying. Again, very similar to my Whose Shoes? workshops, where discussions tend to be open and real!
For the last eight weeks I have been running a “guest blog series” around dementia care. All aspects. Good and bad. No judgements. Simply the power of people’s stories and individual perspectives – people with dementia, carers, providers, clinicians, academics, front-line staff and students, managers and leaders … to name a few!
So I have picked out a few “stories”from yesterday’s ‘Twitter Feed’ (16 July) to give a flavour of the connectivity and energy that is currently happening around key issues in dementia care.
As a carer, Sally (@nursemaiden) is using Twitter to try to make people see the lack of joined- up thinking that still exists in some areas of dementia practice. No amount of spin can explain away the bland, unplated (ie in a plastic pack) meal her father was served. It may or may not have been nutritious – you cannot tell from a photo – but I know as sure as hell that I wouldn’t want to eat it.
I also have huge respect for Sally’s courage in sharing her on-going battle for ‘Continuing Care’ for her Dad and for him to be discharged from his expensive hospital bed so that she can look after him. Don’t mention Continuing Care to me – we have our own family horror story on this one.
Stories speak for themselves and appeal to something very deep in the human psyche. Individuals might exaggerate or underplay, but the weight of evidence is overwhelming when LOTS of people tell their stories. This is the tactic being used so successfully by Tommy Whitelaw, who is caring for his “wee Mum” with dementia and campaigning tirelessly to raise awareness through carers’ letters and a powerful video.
And how fantastic to see Chief Executives tweeting and blogging, listening and engaging as both Paul Roberts (@ABMUChiefExec) and Andrea Sutcliffe (@Crouchendtiger7) are doing. Each of these is writing a blogpost very shortly for this series, but that’s another story (well, two actually).
The blogpost that we posted yesterday was a very powerful story. Suzy Webster (@suzysopenheart) walked us through her “dementia journey”, first with her grandmother and now, very sadly with her own Mum. It attracted a lot of re-tweets and support but, interestingly for the “connectivity” I am trying to explain here, it attracted direct responses from Paul and Andrea, Chief Executives of major social care and health organisations.
Obviously not so at SCIE.
I found it really encouraging that Andrea kicked off her SCIE staff awayday with reflection on a quote from Suzy’s blogpost that same morning. How topical was that! So refreshing when people ditch the type of training where everything is mapped out on slavishly-followed powerpoint slides.
On another really positive note, Dr Karim Saad (@KarimS3D) and others shared a very encouraging report from Community Care about the NHS reduction (by 50%!) in the use of anti-psychotic drugs in dementia patients. Twitter allows people to share achievements and for others (eg Beth Britton, Andy Bradley and Sarah Reed) to congratulate and encourage them. Fantastic work!
One area that I personally get very upset about is “15 minute time slots” in home care services – the very opposite, in my view, to an “outcomes focused” approach. SO task focused. Where does the person fit in this, or indeed the overstretched carer? Especially when you see the “powers that be” debating whether the 15 minutes does or doesn’t include the time for a carer to take their coat of… Yes, seriously.
But then, compared with the good old days of writing by snail mail to your MP,Twitter means that a campaign can spring up from nowhere. Brilliant to see Martin Routledge (@mroutled) tweeting to say he was going to discuss this issue that same day with the Department of Health – there is a lot of transparency and public accountability going on here. Excellent to see people in positions of influence prepared to put their heads above the parapet and share the journey publicly BEFORE they have all the answers sorted.
In my Whose Shoes? tool, we use “mini stories”, snippets from a multitude of perspectives, to build “the big picture”. They trigger discussions. Discussions lead to “lightbulb moments” which open minds to new ways of thinking. How exciting!
Stories are one of the most powerful ways of making a difference, or in the parlance of Think Local, Act Personal (@TLAP1) – with whom I am working in partnership, developing an e-version of Whose Shoes? – … MAKING IT REAL!
For more information about Whose Shoes? visit www.nutshellcomms.co.uk
Footnote: Shortly after this post was published, we started to use the hashtag #dementiachallengers on Twitter. It is serving as a powerful tool to bring together like-minded people who want to see action to improve lives of people affected by dementia and their families – as well as good intentions.