In the shoes of… 100 people living, breathing, working with dementia!

This time last year I had a small idea.

To build on my Whose Shoes? concept, looking at issues from different perspectives, I would ask a wide range of people to write a blog and I would post them, one a day, during Dementia Awareness Week.

And I did. These were the blogs I posted that week.
But it is no good just raising awareness for one week and then doing nothing more.

lightbulbAnd so, my small idea became a big idea.
The “in my shoes” series now has 100 guest blogs.

They are like a jigsaw puzzle where we do not know the number of pieces but each piece adds a little more to the finished picture, an important insight. I have been thrilled by the quality of the contributions and sincerely thank all the great people who have each taken time and trouble to share wonderful projects, passionate pleas, and personal experiences. It has been a very lively year. Through the blog series and associated work, I have met inspirational people and made deep friendships.

And so, there have been some great initiatives and a lot of hype over the last year. The government’s Dementia Challenge has added some much needed oomph; I like to feel that our spontaneous #dementiachallengers movement has added groundswell and a refreshing element of ‘Making It Real’.

But what difference is it REALLY making yet to the average person with dementia? Or their carers? Or their next door neighbours?

For me the benchmark is not government statistics or sparkling projects. I will know we are making a difference when I hear people in the pub talking openly about dementia, without stigma or prejudice. I will know we are making a difference when people experiencing early symptoms of dementia and their families routinely get care, understanding and support every step of the way.

There is nothing scientific about this blog. It is not intended in any way to be a summary of the year. I’m not going to re-visit the fantastic arts projects, the wonderful community activities at the Healthy Living Club or tell you about the Baissez Down song. I am just picking out a few highlights or things that come to mind. Or, like my Mum’s blogs, some ‘random thoughts’… and a few random awards 😉

It is encouraging to see the UK so apparently high profile in the work of dementia research and forward-thinking.

My prize for the most succinct tweet goes to Dr Karim Saad. I loved the sheer brilliance of  summarising two years work by 19 countries in 140 characters 🙂 :

But many issues remain:

These things take time to happen. To filter through the system. To get to the point where it is the norm when someone in the ‘average’ community experiencing dementia has the best possible outcome in terms of treatment (or not), non-judgmental support and a good quality of life.

There has been an energy about the last year.  I found this tweet VERY exciting…

#Dementiachallengers are impatient people. We want to improve things for Fred and Doris’s children and grandchildren… but for Fred and Doris too.  Sorry, you will have to read on to meet Fred and Doris but you get the idea.

It frustrates me to see that people find Admiral Nurses a “lifeline” and relatively inexpensive … but yet there are so few of them around.

Sometimes my frustration comes through…

And then worse news:

How can this fit with the high priority apparently being given to dementia?
Why is it so important to channel more resources into actively seeking out new people with the earliest stages of dementia if there are not enough resources to provide a clear care pathway for those receiving a diagnosis – or even, in many cases, basic support?

In this context, I am a big fan of the Grassroots GPs group – another initiative that has sprung up spontaneously during the year. I have had the pleasure of getting to know this passionate group of GPS who take a very person-centred, holistic stance.

On Friday I accompanied my friend to hospital for a very scary eye operation.
I was reminded yet again how much encounters with professionals who really care matter when you are at your most vulnerable:

Anyway, back to dementia… We have some wonderful writers and contributors within #dementiachallengers. Lots of common sense, derived from years of experience of caring for loved ones with dementia, provides compelling copy. Beth Britton, who wrote an early guest blog for our series,  writes her own ‘D 4 Dementia’ blog. Honestly, if nurses only have an hour allocated to dementia training (as has been alleged), matching it with another hour spent browsing Beth’s blog would be a wonderful thing…

I also hugely admire the work of Ming Ho, an extremely talented writer. Ming shares what I would call the ‘dark’ side of dementia in ‘(Dementia Just Ain’t) Sexy‘.

It is easy in a land where we are all trying hard to be optimistic and positive to ignore the ‘difficult’ agenda. I know my own father-in-law broke his devoted wife’s frail arm as he brought his own arm down suddenly as she tried to comb his hair. A friend’s mother approached her from behind with a knife as she sat at a dressing table, looking for the money her Mum said the carer had ‘stolen’ – it was only the mirror that alerted her.

This reminds me of an inspirational person I follow on Twitter who has Stage 4 metastatic breast cancer. She feels marginalised by all the talk of “fighting the illness” through positive thinking, as though it is somehow her fault that her illness has recurred and spread.

As you will know, I love a ‘can do’ attitude.
So, my ☆,.-~J*DI ☆,.-~’ #dementiachallengers prize goes to Lee (@dragonmisery) for her wonderful website. As a carer for her own Mum, living with dementia, Lee saw a gap in the market. And like so many great ideas, it was simple.
To co-produce a website of really practical information, written by carers,  for carers.

Lee turned this from a brilliant idea… into a brilliant reality in record time.
We were are delighted when it got a mention last week in the Sunday Express.

And some great advice from Anna Hepburn, who has been very supportive of Lee and her great site:

WS flyerObviously the big highlight for me has been my fab new partnership with Think Local, Act Personal (TLAP) and the launch of  Whose Shoes?® – Making It Real   alongside two fab new booklets: Making It Real for people living with dementia and Making It Real for Carers.

Here is the fab new Whose Shoes? / TLAP leaflet! 🙂

I am very grateful to a growing circle of supportive people who ‘get’ what I am trying to do and the wave of goodwill that flooded in for my launch event.

Carers are in the news at the moment. Will the Queens Speech bring some respite?
Well not the speech itself, obviously.

It is great to get Twitter streams from conferences but sometimes depressing when the sound-bites and key messages seem oh so familiar…

There are some real ‘thinkers’ in our group. Ela Farrell pointed out that the role of the ‘carer’ is not just family. Sometimes ‘community’ roles can progress into unrealistic expectations or obligations. Professionals must make sure they do not take advantage of ‘caring’ people or take them for granted.

Ela tweeted about how she had come home from work to respond to an alert from an elderly neighbour. Meanwhile  Ela’s mother was being drawn deeper into being expected to adopt a caring role for her long-term friend and neighbour whose needs are increasing. I could relate to this as my own 91 year old Mum felt quite responsible for her “twin” (same age) friend, living alone with dementia, to the extent that I heard Mum had been round to the back of her friend’s house in the snow when she failed to answer the door. If Mum had fallen then, no-one would have had a clue where she was!

Talking of tracking my mother’s antics in the snow…
There are exciting possibilities … and big concerns… around the use of technology:

BIG steps forward here – and some BIG questions being asked about past practices. I remember visiting my father-in-law in an awful dementia facility just before he died in 2000 and seeing frail people strapped into “bucket chairs” so that they couldn’t escape…

The NHS chats on Twitter are very energising and positive. I love the work of Helen Bevan (@helenbevan) and the powerful simplicity of NHS Change Day: such a clever way of engaging people at all levels. Debbie Sorkin and the National Skills Academy Team are looking further at values-led approaches and leadership at all levels, rather than traditional top-down models. SCIE’s ‘Find Me Good Care’ and video resources provide highly practical tools.

Inevitably, #dementiachallengers have had key areas of disagreement over the last year.
I see this as positive as it is impossible to have a group of such passionate people from such different perspectives and for this not to be so. The important thing for me is ALWAYS to keep the ‘the person’ in the centre and think whether this argument, this particular use of resources is making things easier for them. This in itself is tricky as I see a difference between what helps in the shorter-term (very important when resources are so tight) or what will or may help in the longer-term (very important when resources are so tight). None of this is easy.

Meanwhile, we are eagerly awaiting @legalaware’s forthcoming book: “Living well with dementia”. It has had very positive feedback from a wide range of people – both academics and lay people, which is the divide that is so important to bridge.

People have been very supportive of my blogging series. I was honoured to be invited to write a couple of blogs about the “in my shoes” series for the LSE (blogging about blogging … poor, long-suffering Mr Whose Shoes? despaired!) and to give a talk about it to the West Midlands Co-production group.

I was particularly thrilled to get this lovely mention on the fab “Disruptive Social Care Podcast – (recently back on air!)  Richard Humphries, Senior Fellow at the King’s Fund said the Whose Shoes? blog helps remind him “what it is all about” 🙂

As we enter Dementia Awareness Week 2013,
what will the next twelve months bring?

I personally am looking forward to some powerful Whose Shoes? workshops, co-presenting with Larry Gardiner. We have one lined up with students via the College of Medicine – students from different universities and different disciplines… and inviting in some other perspectives too! It all sounds like the ticket for breaking down a few more barriers and silos 🙂

The last word goes to Hilary Marmot. Her Fred and Doris story is brilliant.
Very funny, if it weren’t so near the truth…

“When will things really change
for Fred and Doris?”

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.
This entry was posted in Blogs, co-production, community engagement, compassion, dementia, education, Gill's Mum, health, in my shoes, personalisation, social care, social media, TLAP - Making It Real, well-being and tagged , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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