Our global #NHSChangeDay campaign – enabling people living with dementia to speak out

“We pledge to take every opportunity to raise awareness of the reality of living with dementia and get people working together for inclusive dementia-friendly communities”

This week our ambitious NHS Change Day pledge went live.
Please join us here!

NHS Change Day pledgeOur pledge represents a big vision – enabling people who are living with dementia across the world to speak out about what is important to them and to enjoy the best possible quality of life.

Regular readers of this blog will know about my Australian friend and colleague Kate Swaffer and the work we are doing together.
Kate is living with dementia. Here she is in action. Speaking out, in her own right, at a major conference on dignity and respect. Hardly ‘stereotypical dementia behaviour’ 😉

As Dr Shibley Rahman says, we are hugely proud of Kate. We want more and more people living with dementia to be able to speak out and say what is important to them – whether this is at national or international conferences or just in their own communities – the local shop, bank or indeed their place of residence.

In October, in Malta, I attended the 23rd Annual European Alzheimer conference. It was my first international dementia conference and I was impressed. People with dementia were at the centre of the conference. Helga Rohra, the (German) Chair of the European Alzheimer’s Advisory Group of people living with dementia, spoke on the main panel, not buried away in an obscure parallel session. Her colleague, Nina Baláčková from the Czech Republic, was also a keynote speaker on the final day.

People listened as Helga spoke powerfully about the things that mattered to her and her colleagues. One phrase struck me so much that, with Helga’s permission, I now use it as a slide in my own presentations:
Helga quote

The European Alzheimer’s Advisory Group ran a wonderful workshop on the first day onf the conference: “Nothing about us without us”.

‘Nothing about us without us’ is a fantastic objective, but it must be real. It is important that the expertise of the ‘experts by experience is valued – that they have the opportunities to get involved as equals, otherwise people become cynical. The words on their own do not deliver the outcomes.

Similarly NHS Change Day itself must deliver real changes – I love to see people pledging to do things outside their comfort zone, not just ‘continuing’ to do what they were doing anyway – or really should be doing as a normal part of their job. This is the central tenet of the inspirational School for Health Care Radicals. Partha Kar posted a really interesting blogpost about this yesterday:

Anyway, back to the Malta conference…
On the second day of the conference, I was hugely privileged to run a one hour Whose Shoes?® workshop. I was co-presenting with Shahana Ramsden from the Think Local, Act Personal (TLAP) team. The organisers had had the foresight to move our session to Day 2, so that it did not clash with the European Alzheimer’s Advisory Group’s workshop. They had realised that similar people would want to attend both, as the central theme of each was around people with dementia having a voice.

As it turned out, oversubscribed and buzzing – not least because wonderful feisty Helga had ended their session the previous day with a rallying call that everyone should come along to the Whose Shoes?® session!

Our workshop was attended by all eleven members of the European Alzheimer’s Advisory Group of people living with dementia. Helga Rohra, Chair of the group says they love Whose Shoes? because it lets people with dementia sit round the table with policy makers, as equals, talking about what makes a difference. Thank you, Helga.

In fact, I will quote her exact words, because they are central to our campaign:

Dear Gill
A Great event AE in Malta and no doubt Whose Shoes? One of the Highlights ! We pwd were happy to be Part of it !
It was Wonderful to Share our thoughts and Feelings with the Other participants : all Mixed around One table / Interactive . That is raising awareness and INCLUSION : no matter whether a Professional or pwd : together Your Workshop is innovative and has to be included in every ALZ Conference .
We People from the EWGPD are Strong Campaigners and we have a Dream : together with our Friends from all over the World a Workshop -!
Give my and our regards to pwd and Friends on your Tour in Australia !
Thank you Shahana for your support !
Great Thanks to you Kate -and To your Working Group !
Working all together WE CAN change the view on Dementia !
LOVELY Greetings
Chair of the EWGPD 

In the video, you can see Helga sitting in the same group as Jeremy Hughes, CEO of the UK Alzheimer’s Society – an unusual learning experience on both sides. But I would respectfully suggest that the ‘others’ in the room learned more about dementia from Helga and her colleagues than the other way round. 😉

Kate and I have connected through social media – Blogging and Twitter. We are no longer ‘imaginary friends. And it is through social media largely that we are connecting with others and empowering them to get involved in our work and now our campaign.

It is through social media that we have built sufficient impact and credibility to be invited to co-present two sessions at the World ADI Alzheimer’s conference in Puerto Rico in May 2014. One session is to share our dream and vision and how we are putting our #NHSChangeDay pledge into action… and the other will encourage conference delegates to take the plunge with us and enjoy the benefits of social media! 😉

It is VERY rewarding to see people, including those for whom reading and writing is no longer easy, reaching out and finding friends, warmth and encouragement.

Kate and other people living with dementia are all unique individuals with different challenges, opportunities and sometimes views. But I don’t think I’ll be speaking out of turn if I say they all share one thing which care professionals do not always share to the same degree: urgency.

Ken Howard, who lives with younger onset dementia in the UK, describes it as “having a ‘shelf-life”. Ken says:

I do not know if I will still be able to communicate so clearly this time next year!”

Kate has just invited Ken to join the global “Dementia Alliance International” group that Kate (inevitably and wonderfully!) has been involved in starting up. This involves regular online Webinar meetings.

The initiative is being run by and for people living with dementia and, only by their invitation, aided by others without dementia, as enablers. I am enormously honoured to be invited to be an ‘Enabler’ and will be delighted to help Ken and others get up and running to join in and take part. This exciting forum will provide a VOICE, and indeed a GLOBAL VOICE for people with dementia.

Last week, at Dr Shibley Rahman’s book launch, I was extremely proud of the lovely comment Shibley wrote in my copy of the book. He is an amazing individual who has himself overcome immense obstacles before being able to complete his wonderful book.

A lot to live up to here! Now it is time to Make It Real.

And our fantastic community of #dementiachallengers is determined to work together to do just that. 🙂

The community is growing. The connections are getting stronger.

Ken Howard and Chris Roberts, both living with younger onset dementia, will be joining us for the Whose Shoes? workshop in the Dementia Café at NHS Expo next week. I am very excited about this.

Ken and I are regularly co-facilitating sessions now but neither of us have yet met Chris. This is another relationship forged through social media – not least the wonderful ‘in my shoes’ guest blog Chris wrote recently. I am thrilled to bring them together as originally Ken told me he didn’t know other people with dementia and would love a ‘dementia buddy’. It is one of the outcomes identified when Ken and I worked with students from across the UK at the College of Medicine Summer School. Enabling Ken and Chris to meet up feels like ‘Making It Real.’

This brand new video, filmed at our recent ‘Commissioning for Dementia – Getting It Right’ workshop in partnership with Skills for Health, shows Ken in action and what a fantastic asset it is to be able to LISTEN directly to experts by experience.

We all have a lot to learn. Next time you talk about people with dementia having ‘challenging behaviour’, stop and think. Think how you would feel if you were frightened or confused or couldn’t communicate clearly or if other people weren’t listening or trying to understand you.

Similarly, if you hear such language, will you have the confidence or the will to challenge it and help people to think more deeply?

I would have asked Kate to contribute to this blog or ideally co-write it. However, I am delighted to say that this task would be in her ‘too busy’ basket at the moment as she is currently away in Sydney.

She is moving and shaking with national policy makers and indeed following up some leads from our recent Whose Shoes? tour together. No doubt she will post a comment when she gets a moment… 😉

So come and ‘like’ our pledge.
Come and join our pledge.
And, better still, come and add your own pledge as to what you can do to make life better for people living with dementia.


Here my lovely friend, Consultant Surgeon, Sam Majumdar makes a pledge for our campaign. We need more medics like Sam! We need more people like Sam! Join us here!

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

6 Responses to Our global #NHSChangeDay campaign – enabling people living with dementia to speak out

  1. Kate Swaffer says:

    Wonderful blog, as always dear Gill… and thank you for supporting the work I do so wholeheartedly. Love you to bits… xox


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