Commissioning for Dementia Care – Getting it Right

First of all, huge thanks to Ken Howard! How good is this?!

This amazing picture was created by Ken Howard, who is living with dementia. We are working together to blast dementia stereotypes out of the water!
This amazing picture was created by Ken Howard, who is living with dementia.
We are working together to blast dementia stereotypes out of the water!

Dementia Skills Network was launched by Skills for Health in November, 2013 as part of the ‘My Health Skills’ initiative. It now has nearly 100 members networking and sharing good practice around dementia care. A good start but with lots of scope to grow and blossom. So we ran a Whose Shoes?®, workshop last week to help it along a bit!

So, how did it all come about?

Dementia Roundtable
Dementia Round Table

As part of the launch of Dementia Skills, I was very honoured to be invited to take part in a ‘Round table’ discussion in London, with a lovely mixed group of people, united by our passion to improve the quality of life of people living with dementia. (I am sitting next to my good friend Dr Shibley Rahman, a.k.a @legalaware, whose ‘Living well with dementia’ book has just been published!). Our discussions were filmed and live tweeted; you can see one of the videos here.

The person driving the agenda was my co-founder of #dementiachallengers, Sally-Ann Marciano (@nursemaiden). We had all followed the way she courageously shared the story of her beloved father Ray as she and her family struggled to find the support they needed, particularly at the end of her father’s life. Sally made a fervent plea to commissioners of dementia services: “So please please as a daughter who lost a beloved father to Alzheimer’s, invest in Primary Care, provide dementia nurses to coordinate care for our loved ones, raise awareness and help reduce stigma and this in turn will bring people forward for diagnosis knowing they are not going to be diagnosed into a life without care and support.”

The round table participants were keen to do more. And so, I was invited to run a Whose Shoes?® , workshop last week in Birmingham: Commissioning for dementia care – getting it right.” And a very lively session it was too, with dementia commissioners from across the country sitting alongside people living with dementia, carers and a wide range of care providers, working together to explore what needs to happen next, particularly around workforce attitudes, values and skills.

The agreed outcomes for our session were as follows:

Outcome for Commissioners:
To understand better the issues that face people living with dementia and their families and carers to inform the appropriate commissioning of services 

Outcome for staff and managers:
To understand better the values and attitudes that need to be adopted in order to deliver high quality person centred care

Outcome for people using services and carers:
An opportunity to engage with those who commission and deliver healthcare services and to help to influence the shape and form of service delivery

Core principles
We developed some new bespoke Whose Shoes?®  scenarios, aligned to the
Common Core Principles for Supporting People with Dementia. We mixed people up on different tables to ensure as many different perspectives as possible. People had name badges but no roles or organisations on display. Whose Shoes?® aims to involve everyone as equals, as people, bringing their whole life experience rather than putting people in boxes.

Soon, as always ,there was a huge buzz in the room
as people explored the key issues.

We were fortunate indeed to have the wonderful graphic recording and facilitation skills of my friend and colleague Anna Geyer, (@new_possibiliti). Key points were recorded live. Anna recorded the issues as they arose, rather than sticking slavishly to the Core Principles as it is important to record what people actually say. Some strong themes emerged.

It was a pleasure and privilege, as always,  to work with Ken Howard (@kenhowarduk).

Ken lives with dementia and was ‘the best asset in the room.’

It felt very special – but all too rare – for people to get this first hand experience, learning from an expert by experience such as Ken.

We also had carers and ex-carers in the room, several of whom have written guest blogs for our ‘in my shoes’ series. Suzy Webster (@suzysopenheart) told people the significance of the chicken photo I included in my presentation. Her Mum knows to ‘turn right at the chicken‘ – follow the link to read the full story.

Similarly Dorothy Hall (@dozzahall) told us how hard it can be looking after a loved one with dementia in a different country!

Exciting when Anna started tweeting some of the
key messages from the day:

And a very powerful point made by a lady in a wheelchair that she needs to be able to rely on statutory, well-regulated services, not the whims of neighbours.

We were all very sad that Sally has been unwell and couldn’t be there.  I hope we did her proud.

The most important thing is for everyone to keep networking and follow up all the fab pledges that were made at the end of the workshop. Most people wrote down at least three things they are going to do differently or start to do now as a direct result of the conversations and learning from the workshop.

Congratulations and huge thanks to Mike Ewins (@MikeEwins) for kicking off the follow up conversations with this lovely Storify from the event.

Mike’s ‘in my shoes’ guest blog has been a very popular contribution to the series.

We encourage everyone, whether you were at the workshop or not, to register on the Dementia Skills website and to join the conversations. I will update the blog with any more information from Skills for Health – eg with a link to the final graphics and video from the session.

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We have some specific plans to use Whose Shoes?®  on a widespread basis to support good practice in dementia care, particularly around dementia friendly communities. Watch this space also to see how the Whose Shoes?® approach will be used as part of the mega NHS Expo event 3/4 March.

We look forward to keeping in touch with you all. Please post comments about the Dementia Skills workshop or ideas about how we can all build further on this momentum.

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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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15 Responses to Commissioning for Dementia Care – Getting it Right

  1. mason4233 says:

    Glad it all went well, looked like you all had a lively discussion and came back with fresh outlook. Sorry to have missed it

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    • Thank you so much Chris. Let me know if you hear of any opportunities to do something similar and perhaps you would like to get involved. Speak to Ken to find out more about how we are working together for change. “2014 – the year of change” has started with a bang! 😉

      Like

      • mason4233 says:

        I am a purple angel ambassador now and am campaigning in N.wales for Dementia friendly communities. Also the wife and I are holding info awareness sessions for the dementia friends. We are all doing our bit ,in our own way while we can. As you say 2014-the year of change. Will email Ken. Thank you

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  2. Anonymous says:

    Dear All,
    As many of my dear friends and colleagues will know I am being treated for depression and anxiety. This is why unfortunately I was unable to attend the workshop and sadly am off work. I knew Gill would do a wonderful job and thank you to Anna and Ken for your all your hard work and input into this fantastic event.
    I miss my dad very much and haven’t coped very well since his passing, I came down like a tonne of bricks over Christmas and am slowly trying to climb out of this very black hole. Not only now have I experienced the lack of support for many living with dementia but also the lack of support available to those in mental crisis.
    I thank you from the bottom of my heart for all you do to raise awareness of dementia and my hope is that one day all will receive the compassionate care and support they so deserve.

    My best wishes to you all

    Sally-Ann xxxx

    Like

    • Thank you so much for taking the trouble to post on the blog, Sally-Ann. That really means a lot to me and to the others involved in running the workshop. Your colleagues did a wonderful job in taking over and helping make the event a success but we missed you enormously, as you will know. Your Dad would be very, very proud of you.

      So sorry to hear about your depression and thank you for your honesty – a key part of the message is that these problems are spoken about openly and that good support needs to be available. Take care and hoping all your many friends and the huge love and respect you command on Twitter can help you get well soon and find fulfilling new directions.

      Love and very best wishes. Gill xxxx

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  3. Kate Swaffer says:

    What a wonderful blog Gill, and an amazing day full of truly amazing people… so much good ‘stuff’ going on around the world, and getting your incredible Whose Shoes? tool out there is making a difference. Getting the ‘real experts’ like Ken Howard in the room is the true icing on the cake, and although it should have been happening years ago, at least it is now. No longer ‘about us without us’. Not sure when, but we must talk about the Dementia Friendly Communities over here in Australia, and how we can get you back for that… thinking hat ON, Whose Shoes? ON, all stops out, and the ‘Too Busy Basket’ out with the dishwater!!!

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    • Thank you, dear Kate. I thought of you as I was writing the blog and tried to make you feel as though you were there! 🙂 It was great to see everyone sitting talking together as equals. Ken was an absolute star – ideally he should have spent a little time at every table but no-one wanted to let him go as he was so interesting and they were learning so much! As you say, “No longer ‘about us without us’” and I would encourage other people living with dementia to get in touch with us and join the movement we are creating here.

      Suzy Webster and Dorothy Hall were brilliant too – again there is nothing quite like first hand experience of working together as a family to make things work for everybody and carry on pre-diagnosis lives. I was also particularly thrilled to have Mike Ewins in the room as he is a champion of those who do not have family support. As I have said many times, if society and care systems can be high quality for the most vulnerable people, they will be good for everyone.

      Hoping this blog will be useful to share with the wonderful people we met at our workshops and very full programme of meetings in Australia. The ‘Too Busy Basket’ must contain the stuff that does not keep us on track with our important, exciting vision for a dementia friendly world 🙂

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  4. sandiespring says:

    Gill,
    we had a great day, so big thanks to all, especially Sally-Ann who was obviously so instrumental in putting the event together, (if you read this Sally-Ann, all good wishes!). We are looking forward to bringing you and WhoseShoes to Kent in the very near future – hopefully more news on our project will come very soon!

    Best Wishes

    Sandra

    Like

  5. Anonymous says:

    Gill, wonderful blog especially with all those embedded tweets, but mainly because it took me right back to the workshop and helped me to reflect on my perception of the day and see it throughout the eyes of other people too. For me I loved that we all left our ‘roles’ behind for the day and returned to them at the end of the day through our action pledges which will be posted as a reminder in 6 weeks time. My group started the whose shoes board tentatively maybe reluctantly but it is so well written that by round 3 even the disaffected had arms unfolded and animated. I can highly recommend ‘whose shoes’ as a mechanism to keep a team really focussed on the person. I can see it being adaptable for lots of scenarios and the dementia adaptations were a great addition I loved Anna’s graphics too, so much colour. All my subsequent workshops will seem so grey. Dare I also say it was fun.

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  6. Pingback: ‘Living well with dementia’ – the launch of Dr Shibley Rahman’s ground-breaking book | Whose Shoes?

  7. Pingback: In the shoes of … | Ken Howard, living with younger onset dementia | Whose Shoes?

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