Changing the world of dementia – one tweet at a time

The blog has been quiet for a while. Quiet is often good – especially when amazing things are happening behind the scenes!

The last week has been exciting. The passionate gang of people who have written guest blogs in this series and who often tweet with the #dementiachallengers hashtag, have had some amazing successes. I started tweeting about this and quickly found that the successes were really just too many… a blog was called for.


I cannot tell you how thrilled I am that Simona Florio has been shortlisted for the National Dementia Award for the Best Activities Co-ordinator. I love stories and there is an amazing story to tell here – diffidence, passion, audioboos co-produced with the Department of Health, potential videos and Facebook community hubs. But this will be a separate blog in a month or so, if I can get my act together. The story is growing by the day and we are all loving every minute.

Anyway, all I can say for now is that Simona’s blog for our series, describing the fantastic Healthy Living Club in Lambeth where people with dementia join in as equals and have FUN, has been featured on the government’s Dementia Challenge website. A growing number of audioboos allow you to share the joyous atmosphere – and indeed wish you were there!

I have equal admiration for Dr Karim Saad’s (@KarimS3D) Young Onset Dementia team in Coventry. I was recently privileged to help facilitate their AwayDay, including testing out new dementia-related Whose Shoes? material. I gained an insight into a dynamic team who, like all the best teams, are constantly pushing the boundaries and looking to improve people’s lives further. So it was no surprise when Karim announced this week that he was “dead chuffed” that the team had picked up a SECOND award for excellence… since July.
… And who wouldn’t be? 🙂

Unappetising, bland, hospital meal… served like this!

But perhaps the MOST rewarding has been the huge successes this week of people living with dementia and their carers. It sounds strange to those not on Twitter, but #dementiachallengers is like a large extended family. We are following each other’s ups and downs with real care and compassion. There is currently a lot of suffering in the world of dementia – not just from the illness itself but, all too often, from an inability to access the support people need from an unyielding, process-driven system. Alongside intolerable social isolation.

This is a celebratory blog so suffice to say that, after recent very poignant losses, the following successes have ALL happened for #dementiachallengers this week.

Sally and her Mum, Liz (they tweet as @nursemaiden and @carer33 respectively) have been invited to sit on the Department of Health Dementia Task and Finish group – important national work as part of the improvement process. The first meeting is tomorrow – good luck, ladies!

Tommy Whitelaw (@TommyNTour) has just been shortlisted for the Roses Media Award :Best coverage of issues around dementia and/or social care (Barchester special award)
Roses Media Award? Never heard of it? Well, just look at the shortlist and you will be “well impressed”:

  • BBC1:      Panorama – Undercover: Elderly Care
  • BBC2:      Louis Theroux – Extreme Love: Dementia
  • Tommy on Tour: One man’s      mission to raise awareness of dementia (blog)
  • The      Independent: Dealing with dementia: “My dad was treated like lost      luggage on a carousel,” by Arifa Akbar
  • BBC      Radio 4: Today – Adam Brimelow reports on a new approach to looking after      people with severe dementia
  • Dementia – dementia blog – Beth Britton (see below)**

This is a wonderful and well deserved tribute to Tommy for his tireless campaigning for carers of people with dementia and his humble but powerful representations to Scottish government and beyond. His “wee Mum Joan” has sadly died since my last blogpost. How very proud she would be of you, Tommy. And I know that encouraging people to watch your film is the very best tribute we can give to her:


And then, just today, I heard that Norman McNamara (@Norrms), living with dementia in Torbay, is the regional winner of ITV’s ‘Pride Of Britain – Dementia Award. What can we say? Norman is an active contributor to our series and, like Tommy, has a lot of fab material on the internet. Through videos, blogging and poetry and a very proactive approach to “Making It Real”, Norman is campaigning to help people understand life beyond diagnosis – and what a fulfilling, rewarding life it is too. We are all rooting for you in the National event shortly in London, Norrms but, whatever happens, hoping you and Elaine have a wonderful experience. I’m sure you will manage to “up the ante” and promote dementia-friendly communities a little more.

Shirley Ayres (@ShirleyAyres) and Stuart Arnott (@MindingsStu) have produced another inspiring Disruptive Social care podcast. They are BIG supporters of #dementiachallengers and mention us again this week. Their podcasts are informative and entertaining and I am delighted that I am still officially an “alumna” and indeed one of the “alumni” (sorry, private joke with Stu!). Another “aside” is to say congratulations to Shirley’s daughter (@nqnurse2012). I am looking forward to reading her new blog following her adventures as a newly qualified staff nurse!

Listen in to this week’s podcast and find out many serious things… but also how the powers-that-be perhaps generate clichés such as “as “Driving better excellence for the future…”?!  – using “Strapline-O-Matic” (by @STforgirls). As I said in Week 1 of the podcasts, Chris Evans and Moira Stewart, eat your hearts out.

The scorebox at Scarborough cricket ground in 1948. Copyright Sporting Memories Network CIC.

Talking about things digital, Lee Stribling (@dragonmisery) has taken it upon herself to create a #dementiachallengers website! Very early days yet but we will all support Lee. I love the proactive, “Just-Do-It” approach, as opposed to the familiar D-I-Y …
Don’t Involve Yourself.

Similarly, Tony Jameson-Allen is sharing “Sports Memories” with people in Leeds Care homes. If they find some sports lovers who are anything like the guys at our cricket club, these people enjoy remembering every ball ever played!

Meanwhile, #dementiachallengers are global. In Australia, the inspirational Kate Swaffer (@kateswaffer) living with dementia has just started a new blog called Global Dementia Voices, a place for people with dementia to tell their stories.  I’m hoping she’ll make links with fab people in this country like Norman McNamara and Ken Clasper (@ken_kenc). On a lighter note, I came across this “Flashmob” video by Alzheimer’s Australia Vic (@AlzheimersVic) – an innovative, fun way of raising awareness.

And running a much needed “golden thread of compassion” through the whole world of health and social care and specifically dementia care, we have Andy Bradley. Andy embodies the very essence of a “Quiet Leader” (Anne Cooper @anniecoops wrote a very interesting blog on this subject this week). I am a huge admirer and I hope Andy will not mind me including him in a blog about #dementiachallengers. Andy’s approach is so gentle and reflective that perhaps #dementiachallengers sounds a little confrontational – if so, apologies. But, dementia is a challenge for society and the government’s banner is “the Dementia Challenge” … and I’ve never been one to get too excited about semantics.

Andy has been doing some wonderful work – key meetings, influencing, a TED talk coming shortly …(how good is that!)  But, most importantly he is inspiring nurses and others… day by day… to be compassion trainers. He is finding ways to embed deep compassion, which we all crave but all the more so when we are vulnerable, into practice. This work takes courage and grit to get off the ground as it is perhaps not “fashionable” in these performance indicator-driven tough times of austerity. It is wonderful to see leaders in the NHS and local government (who also need to be brave to follow this route) beginning to embrace compassion instead of just colluding with the prevailing culture of “compliance”.

There is so much talent in the #Dementiachallengers group, I have hardly scratched the surface. I just set out to mention the specific successes and developments that I am aware of THIS WEEK. I know there are key people Sarah Reed (@SarahReed_MHR), Suzy Webster (@suzysopenheart), Beth Britton (@Bethyb1886) – **but see below** :),  Diane (@DemenShare_) Wendy (@chill4UsCarers), Elayne Dunn (@cognitivechat), Edana Minghella (@edanaming) and overseas tweeps such as Nurse with Glasses (@nurse_w_glasses) Michael Wakely (@wakelym) and Pedro Cano  (@pcanod) … and many more who have not been mentioned. Just take a flick through the guest blog series or follow #dementiachallengers on Twitter and you will find out who they are!

And finally, for me, personally, the week has also been exciting as we are testing the new electronic version of Whose Shoes?  developed in partnership with Think Local, Act Personal, (@TLAP1). The first public viewing will be at the ADASS National Children’s and Adults’ (NCAS) conference in Eastbourne shortly. Like the Whose Shoes? board game, this focuses on the wider issues – putting the person in the centre, integrating care pathways, compassionate and inspirational leadership. I really enjoyed working with The MS Society and others this week, using Whose Shoes? to engage people, harness creativity and work together for change. More specific dementia-related material is being co-produced, working with people like Dr Saad’s Coventry team, the fab EDUCATERs in Stockport, #dementiachallengers and many others. Watch this space.

I’ll leave you with a taste of what is happening at the Healthy Living Club.
 ☼♫Singin’. Don’t worry about a thing…cos every little thing’s gonna be all right♫☼

**Ha! Great stuff. I knew this would happen! Because #dementiachallengers are such an amazing group, it is impossible to keep up and Beth’s name doesn’t appear on the listing! Michael Wakelym has just pointed out that Beth Britton is ALSO shortlisted for a Roses Media Award. Beth wrote a guest post for our “in my shoes” series and more importantly writes a compelling blog drawing on her experiences of caring for her Dad who had dementia for 19 years, before he died in April 2012. In this short time Beth has been writing her “D4Dementia” blog and this recognition is again an amazing achievement. Sorry to see she is up against Tommy – but this is not about competition, it is about  spreading awareness. I’m sure they’ll love meeting up at the glitzy awards evening in London on 8 November – and may the best man – or woman! – win! 😉

STOP PRESS: AND More good news! The work Gill Bailey and Helen Sanderson Associates have been doing, introducing one page profiles and person-centred approaches for residents at Bruce Lodge, has also been shortlisted for an award! We are delighted to  that they are finalists in the 2012 National Dementia Awards in the Outstanding Innovation or Product category!

I am looking forward to the Dementia Congress in  Brighton next week. It is turning into an “epic tweet-up” for the #dementiachallengers group as well as a fabulous programme of speakers, workshops and posters organised by JDC Journal of Dementia Care. The Awards Dinner on 31st October wiil be wonderful. With Simona and Gill both shortlisted, and many other people I know, I think my hands will be as sore from clapping as they were when I attended my two sons’ graduation ceremonies last month 🙂

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About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives. http://nutshellcomms.co.uk
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7 Responses to Changing the world of dementia – one tweet at a time

  1. This is so inspiring – so many people out there doing great things and spreading awareness and encouragement. It really helps. I take my husband out from the care home on Fridays and post on my blog about it on Fridays and Saturdays. It helps me and hopefully it’s another drop in the ocean!

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  2. Whose Shoes? says:

    Thank you Dorothy. I have just shared this with my Twitter pals, the #dementiachallengers. You are one! I hope you and your husband are getting the support you need. No doubt you have heard of Chill 4 Us Carers http://www.chill4us.com – a VERY supportive and informative network for carers. Keep in touch. Gill x

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  3. Kate Swaffer says:

    Great idea to write up what is happening globally, well done!
    Also, just letting you know my new blog is called Global Dementia Voices, http://globaldementiavoices.wordpress.com a place for people with dementia to tell their stories, rather than collecting global stories.
    Keep up your great work.

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  4. Whose Shoes? says:

    Thank you Kate! Have amended the text too. Hope it helps to give people with dementia a voice and direct people to your wonderful blog 🙂

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  5. Pingback: Being a real person on twitter | Digital Health

  6. Kate Smith says:

    So good to see the Healthy Living Centre’s work getting recognised. It’s also a part of our Innovators Network at the College of Medicine – groups of groundbreaking projects that we think should be used as blueprints across healthcare.
    http://www.collegeofmedicine.org.uk/innovations-network
    if you are interested.

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  7. Pingback: In the shoes of … Ming Ho | Writer and family carer | Whose Shoes?

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