Whose Shoes? – Making It Real

Latest news:

WS flyerThe new electronic tool Whose Shoes?®-Making It Real is now available from our website.

  • A tool to give everyone a voice and work together for positive change in health and social care.

IMG_7789We celebrate a year of the amazing #dementiachallengers – my friends.

Together we are making a difference! :)___________________________________________________

Video of the Whose Shoes? – Making It Real launch in London in partnership with Think Local, Act Personal (TLAP):

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Whose Shoes? goes to Paris – ‘Quality and Safety in Health Care’ event

I am back home after what feels like a fairy-tale week in Paris. Over 3000 people from about 80 countries attended the IHI / BMJ ‘Quality and Safety in Health Care’ event in Paris (#Quality2014) and the opportunity for connecting with people from across the world was truly mind-blowing.

Added to this, I was presenting my Whose Shoes? session in the Blue Amphitheatre – the second largest auditorium in the whole event – in the last session before the final plenary of the event on Day 3, so with maximum time to prepare…a.k.a fret…!

I arrived on Tuesday and felt a sense of adventure. I had no plans to meet up with anyone until the next day. I was chatting to me friend Dr Sam Majumdar in Scotland, who has been brilliant in helping me hone my presentation, and told him I was going to go out for a walk and see what story merged. To be honest, I think I was looking for ‘good omens’ – a consequence perhaps of my immersion in the Roman world as a student.

The auspices were good! I posted a blog telling the story of what happened that night in Paris.

I felt very privileged to be invited and was determined to share the experience and the learning with those who couldn’t be there.

I had also written a blog anticipating the conference and setting out what I was planning to present in Paris. So, all that was left was to actually pitch up at the event… ;-)

Here I will tell you what happened – some personal highlights and reflections and, of course, how my session went.

With the wonderful Helen Bevan at the helm, guiding the #boatrockers of the world, it was inevitable and very powerful that social media was to play a huge part in the event.

It is impossible to do justice to the excitement and opportunities that social media generates.

Since jumping ship from my ‘day job,’ it suddenly struck me that I had come rather a long way!

I have spent the week in a bit of a whirl wondering how this has happened. And it seems I wasn’t the only one to feel like this.

This is Susan. One of my new friends from Canada! I love her spontaneity and freshness. Her passion for new knowledge and connections.

And another lovely Canadian lady!

I loved receiving messages of support from friends across the world, especially my special friend Kate Swaffer in Australia – and a torrent of supportive DMs from Shibs, a.k.a Dr Shibley Rahman, @legalaware. ;-)!

I was really looking forward to meeting the lovely Christina Krause, a long-term Twitter friend.

I met her in rather a dramatic way ;-) I rocked up at her social media masterclass and was invited to make a pledge. I made one she will hopefully remember ;-)

The social media session was wonderful with some great learning, connections and pledges.

You can all see the excellent social media slides here:

And read Ros Gray’s ‘Storify’ here:

Kate Swaffer  and I have the huge honour of presenting a social media session together as part of the Opening Reception of the ADI Alzheimer’s Confrerence in Puerto Rico shortly.

I was therefore looking for all the tips I could get. Helen and Christina gave me a mini masterclass on using the Pecha Kucha approach so that is now high priority to work something up in the next week or so …  alongside launching our Whose Shoes? Dementia Friendly Communities project in Kent!

I was really looking forward to the Pecha Kucha session in Paris.

In the event, I missed most of it due to a wonderful meeting with Carrie Marr and another colleague from Australia. This was following up some work we have been doing as a result of my recent trip to Oz and was very exciting. Luckily, many sessions from the Paris event are live-streamed (including mine, apparently!) so I am hoping to be able to catch up with some of the excellent sessions I missed. Many delegates find that the conference is a perfect opportunity to have face-to-face meetings with colleagues from across the world. This was time very well spent – and so much more fun than Skype!

Another real highlight was that inspirational Dr Kate Granger was able to make it, after all, to Paris, and enjoy herself so much.

I had already met Kate briefly at NHS EXpo but had the privilege to hear her present her wonderful #hellomynameis campaign and to get to know her better.

One session I found excellent outlined the progress of Patient Safety in Scotland.

A combination of real substance in what they were presenting – joined up and empowering practice – coupled with engaging visual presentation made this very enjoyable.

Thursday was the middle day of the conference and there were still people I really wanted to meet but it is hard to link up with 3000 people there.

Luckily there was a ‘tweet up’ at the ‘colourful benches’ in the Learning Zone.

I bet regular ‘tweeps’ will be able to spot people they know in this photograph :)

Other people I know are in the photo are @drsusanshaw @tobyhillman and @drcatchatfield. We wondered where Helen Bevan had gone as she was there two minutes before the photo was taken but she had run off to get ready for her major presentation immediately after lunch.

I don’t think I have ever felt so emotional about someone else’s presentation.

As well as being a really important plenary (I find the fact that Helen’s work is ground-breaking on a global scale incredibly exciting) I had had the huge honour of taking part in a wonderful ‘Digital Stories’ weekend where Helen made the two moving films that she was going to share at the beginning and end of her talk. We will all talk about it for a very long time to come as a really special time, so the fact that I had seen the stories take shape and tiptoed round with cups of tea gave a lovely extra dimension.

Helen’s talk went REALLY well and I was delighted, along with so many other people in the huge auditorium.

Thank you Marie Batey for taking this lovely photo straight after Helen’s presentation – a very special moment.

I couldn’t help feeling proud of some of the other great initiatives coming from the UK.

I really enjoyed meeting Samantha Jones, another one whom I have admired from a distance on Twitter. It seemed the feeling was mutual and I was sorry Sam (along with so many others) was not able to stay for my session. I hope she will watch it on the ‘livestream’ as I think Sam is someone who will really ‘get’ Whose Shoes? ;-)

And so it was nearly time for my session and I was overwhelmed by the number of good luck’ messages I received.

These are just a selection but I was very grateful for each and every one and felt the love coming from the folks back home and abroad :)

I was feeling good after a lovely evening out (but not too late!) the night before

This tweet struck a chord. Whose Shoes? is very good at triggering ‘crucial conversations’

I posted a series of tweets telling people what I planned to do in the session.
I have interspersed a few photo-tweets Helen Bevan very kindly posted which hopefully brings this alive for you.

And I am THRILLED for Ken, receiving an award for the wonderful ways in which he is spreading his powerful messages that you can live well with dementia.

I hadn’t heard this theory before. But I WAS excited giving my talk and I think it showed!

Carrie Marr had warned me that my session was going to be live-streamed – the secret ‘L’ word ;-)

I hope this will give a chance for more people to see it and to understand Whose Shoes? We only had half an hour, including questions, but it was a wonderful opportunity, sparked a lot of interest and helped forge links between some very interesting people.

Our ‘Patients Stories’ session was chaired by Helen Haskell, Patient Safety Advocate with Mothers Against Medical Error, from Columbia. Mine was the second half of a one hour session, with the first speaker being Dr. Tony DiGioia, a  practicing  orthopaedic surgeon from the USA who gave an excellent talk about ‘Shadowing’ the patient experience as a tool for quality improvement. We had put some effort into ‘blending’ our session to make sure that it felt like a coherent whole rather than just two disparate parts and I think people appreciated this. It certainly felt that way as we managed to leave a good amount of time for questions and answers and answered them between us rather than totally separately. It feels good that these major conferences are putting more thought into important details such as this.

I would not be able to do what I do without the support of my friends and mentors who believe in the work I am doing and share our dream for better quality of life for people who need support with health and daily living.

This was a very important conference and I was extremely honoured to take part and have a chance to influence the global movement for positive change.
I am not interested in ‘measures of influence’ per se but am aware that this Forum is regarded as the largest global healthcare improvement meeting in the world. Virtually all of the global thought leaders in the world of healthcare improvement spoke at this meeting. So I am pretty chuffed at being ranked highly in the Sympur statistics This is a direct reflection of all the amazing support I receive from people who believe in me and my work and what it aims to achieve for ‘ordinary’ (there is no such thing!) people.

And all too soon it was the end of the conference

It had been an exhilarating, tiring and totally unforgettable
few days.

Posted in Blogs, compassion, dementia, health, in my shoes, personalisation, social media, well-being | Tagged , , , , , , , , , , , , , , , , , , , , | 2 Comments

I promised you could ALL come with me to #Quality2014, Paris :)

Here I am in Paris looking forward to the Quality2014 conference and in my last blog, I promised that I would take you all with me…

It is the first time I have been in France on my own since I was a student. Family holidays are very different.

I went for a walk to breathe in the atmosphere and walk back in time. I spent a year in France as a student, teaching. The memories came flooding back. We all have our own unique stories that nobody else really knows. Already my feelings of excitement, slight loneliness, deep reminiscence and how we all need to be connected were resonating with the key themes of my presentation. An uncanny serendipity was happening. I shall tell the rest of the story in tweets…

5

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Zut alors! I’m off to Paris this week. Please come too! :)

I would never have thought to submit an abstract for the International Forum on Quality and Safety in Healthcare, Paris 2014.
But Helen Bevan, very kindly tweeted to suggest that I did!

Moi?

Well, if that is not a fab bit of ‘encouragement’ in French or English, I don’t know what is…!

So I thought through what I might do. Sticking well within my comfort zone, I envisaged a session of about an hour (as we did in Malta) – people sitting around tables, relaxed, interactive. Well, OK we ran out of chairs and tables in Malta… but you get the idea…

But then, when an abstract is accepted (which is wonderful) it has always morphed into something completely different (a bit ‘Pythonesque’ IMHO)… but still expecting the same outcomes.

Did I really say I could deliver ALL that?
How to change the world in 30 minutes… by Gill. Hmm.

So I asked Helen. “You got me into this…” And sure enough, we met and I ran some ideas past her and I felt I had pretty much cracked it. Honestly, she can make anybody feel they can achieve anything…

But in my world, nothing is static and that is what is so exciting. New opportunities come along. Things happen…

One of my passions is to find ways of working with people, helping people to have a voice.  And for care professionals to realise that people have a life, not just a set of health needs.

I was clearly ahead of my time. Which is kind of pleasing but also very depressing to feel that the same messages are as true today as they were five years ago.

As I attend different events, I consciously notice whether there is a holistic approach or whether people’s health and care needs inhabit different planets. Never to meet again until the Big Crunch… which I understand is now unlikely to happen anyway…

Anyway, I need to take you to the Amphitheatre Bleu, Level 2, Le Palais des Congrés des Paris.

My session in Paris is called ‘I4: Patient Stories’ which is a huge honour and a great responsibility. Ideally, I want to take all of ‘my gang’ with me in person – Kate, Alison, Chris, Anya, Claire, Clenton, Yvonne, Michael, Ken, Helga, Nina, Agnes, another Chris(!), Linda, Dom … the list goes on… you know who you are… But I can’t. So I need to find imaginative ways of bringing real people into the room with me. The Whose Shoes?® scenarios do this to some extent – real messages (often hard-hitting) written and recorded by real people about the things that matter to them.

With Ken Howard’s permission, I am going to start the workshop exploring issues around how someone receives a diagnosis of dementia and how this process can be improved – helping people develop coping strategies. Ken’s recent ‘in my shoes’ blog gives some wonderful examples of his coping strategies and we will soon follow this up with a second blog.

Kate Swaffer’s recent blog “Dementia=loneliness” inspired another part of the presentation. The key message again is that medics cannot ‘fix’ everything but by acknowledging how people feel, they can help them feel less isolated. Ken will tell us about hope and how key people have helped him realise that a diagnosis of dementia, particularly in the early stages, doesn’t have to be an immediate “mental death sentence”.

Back in January, a short video was made at the Skills for Health Whose Shoes?® workshop in Birmingham. Ken was the star of the session. So, even though Ken can’t be with me in Paris, I can show this film.

Ken and I are really enjoying working together. Building on the strong ties and friendships with Kate Swaffer and other wonderful people across the world, we have ambitious plans. Take a look at the Dementia Alliance International, led by people living with dementia and supported by people whom they choose to work with, and you will get the idea.

Kate and I, and others, designed an ambitious pledge for NHS Change Day. When I presented a Whose Shoes? workshop at NHS Expo in Manchester, Joe McCrea from the NHS Change Day team, invited Ken and me to talk about the pledge and specifically how Ken was in favour of peer support to reduce the feelings of hopelessness that can so easily be engendered.

The people in Paris will hear about our pledge, another opportunity to turn it from rhetoric to reality.

I blogged last week about the wonderful storytelling weekend in Cambridge. Ken made a film about his feelings at the time of diagnosis. In fact he made the same film with two different endings. There is a whole genre around ‘alternative movie endings.’ Sadly, I am still waiting to find time to finish my first film, but I really hope to soon.

So, my ideas have been taking shape. And of course, all of this has happened long after I submitted the abstract all those months ago.

It feels exciting that I am in regular contact with co-presenter Dr Tony DiGioia (USA) and Helen Maskell, our Columbian Chairperson, to plan our session. Hopefully we can make it seem like one interesting whole with two speakers rather than as disjointed as many people’s experience of the health and social care system.

Helen had shocked me when she said she thought at least 200 people would sign up for our session. At the last count it was 265 and rising. Sitting in rows. Hmm. How to make it ‘really interactive’ as I had claimed in the blurb…?

In February,  I attended the Florence Nightingale conference and saw how Professor Susan Fairlie, amongst others, embedded films in her presentation. Now I can do this too!

It is not so easy to explain Whose Shoes?®.  It is much better if people experience it. Talking about experiential learning misses the point somewhat ;-)

So I worked away on my presentation. I wanted to bring the voices of people living with dementia into the room in Paris. And I found a way to do it!

Helga Rohra, the Chair of the European Working Group of People Living with dementia, is wonderful. I met her and the rest of the group at the European Alzheimers conference in Malta. I am incredibly honoured that they GET Whose Shoes?® and support me in so many ways. I chat to Helga regularly on Facebook… but she is not on Twitter (yet!)

Social media is great for this. It can be like having a brain-storming session with the most creative minds! I wanted to include some of the cards from the electronic version of  the Whose Shoes?® tool and managed to embed the audios.

Now I am imagining the voices of Helga Rohra, Kate Swaffer and Ken Howard booming out in the Amphitheatre Bleu.  I am smiling :-)

With just under a week to go  as I write this, things have become exciting in the build up to the event.

Helen Bevan is presenting to a massive audience – over 2000 people. I remember some of the tweets from last year’s conference and managed to find this one

Helen ran her presentation past the good and the great at NHS IQ last week.

This was particularly interesting for me as I had had the privilege of being with Helen last weekend when she made her two digital stories, the past and the future, to be used as key parts of her talk.

Meanwhile, my lovely daughter Jenny, a Clinical Trials Co-ordinator so potentially one of the audience, gave me the chance to have a ‘run through’ as well. The cat was appreciative too, sleeping soundly but not being rude enough to yawn.

I am lucky to have wonderful mentors. It was now time to run my ideas past my friend, Dr Sam Majumdar.

So, as I write this, there is a week to go.

I am waiting for an audio file from Germany, when Helga returns from her latest mission to spread her wonderful messages about living well with dementia.

I am waiting for a wmv. version of the film from our Health for Skills workshop.

I realise that this time next week I will be live at the Eurovision. Alison Cameron will be there in spirit supporting me (she loves the Eurovision). Hoping not to go down in history as the Norway of social care and health. Nul points.

Adrenalin is running high…

So I need to get ready. At the moment, I only have a badge. But it is a good one :)

Huge thanks to Dr Philip Pearson for the idea of putting #hellomynameis on our badges and really hoping to meet Dr Damian Roland at last too. I have a few other special people I am looking forward to seeing, including the lovely Carrie Marr. Carrie is over from Sydney and we are hoping to build on our meetings Down Under.

And, most importantly, coming back to #hellomyname is, thank you to inspirational Dr Kate Granger. Really hoping you will be well enough, dear Kate.

If all doctors were like Kate, all the #boatrockers could take a chill pill and go boating down the Seine next week instead of worrying about how to improve health care. And if that happened, we could even have a bit of added fun…

So, enough frivolity. Have we got a date?
Whose Shoes?®
- Paris

And, over the weekend, I work some more on my presentation. I get some really helpful feedback from Sam. A ‘few ‘critical friend’ type comments, but most importantly a reminder that it will all be fine if I speak from the heart. And, as this is what drives what I do, I have nothing to worry about! :)

And then the last pieces of the jigsaw fall into place. Recordings from two inspirational ladies from across the globe. Helga and Kate.
Thank you! :)

And the inevitable technical problems…

And very interesting to hear that new NHS England Chief Executive. Simon Stevens is keen to ‘walk in patients’ shoes… I said I was ahead of my time ;-)

And this blog itself is a bit like a play within a play.
Helen Bevan tweeted a link to a very interesting piece about making major speeches.

Well, my talk in Paris is my version of “I have a dream.” Like the recent Patient Care event, I see it as a big opportunity to make a difference.

I would not be going to Paris at all if it were not for social media – well, only to play with a few #boatrockers on the Bateaux Mouches.

And the final message, as I believe should always be the case, comes from my inspirational friend, Kate Swaffer, living well with younger onset dementia. Kate says:

“My hope for this conference is the voices of everyone are heard, loud and clear, but with the heart and soul component of our humanity very much in the centre of every interaction.
Thank you Gill for your platform, the Whose Shoes? tool, that enables and supports inclusion for everyone.

Hoping the ‘experts’ will not be too busy to listen! ;-)

So, ‘crowd gathering’, it is. Have we got a date?
Patient Stories – Whose Shoes? – Paris.
1.15pm (UK time) on Friday 11 April. Amphitheatre Bleu. Session I4.
#Quality2014 #WhoseShoes. Live tweets…
I NEED my Twitter pals to be there :)

Posted in Blogs, community engagement, compassion, dementia, health, in my shoes, mental health, personalisation, public sector, social care, social media, well-being | Tagged , , , , , , , , , , , , | 3 Comments

‘Patient Voices: digital stories – a whole new world!

I was very honoured to be invited to spend a weekend with the wonderful Pip Hardy and Tony Sumner from ‘Patient Voices’. Making digital stories. Making friends.

I couldn’t wait to tell my Mum a.k.a @Gills_Mum all about it. She loves stories and is really really fascinated by the many tales I have to tell her. It is lovely to have new conversations. I love to see the sparkle in her eye, triggering her own memories, formed over 92 years. Who knows – perhaps we will make a digital story with Mum?

Digital stories?

  • Something compelling to connect with the viewer
  • Some context – what is this story about?
  • A crisis of some sort probably – or at least a deep concern, a powerful change… the reason for not just wanting but needing to tell this story
  • And the close

4 Cs. As always, very popular in health care. Where would we be without the letter C? ;-)

My head was in overdrive. Mine is becoming quite a big story. What to choose for a three minute video?

As always for me, Twitter comes to the rescue and puts things in perspective.

Already we were thinking about how to share and build on the stories. Stories not yet written. This is the Twitter energy I love!

There was a very strong link to the wonderful Patient Memoirs event I had attended in Cumbria the week before.

“Patient Stories are the most powerful knowledge base we medics have ignored for very long”

At the end of Day One, our stories were taking shape. We deserved to relax…

But then again…

On Day 2, we were all so busy that we didn’t find time to tweet!

Except for Pip, to chivvy us a long a bit!

My head is bursting with ideas… More digital stories. Sharing what is possible and often very simple. Connecting people.

Ken has pledged to spread the word that a diagnosis of dementia is not an immediate mental death sentence and that the 15 minutes after receiving a diagnosis of Alzheimers are life-changing.


 
The two films (yes two) Ken made over the course of the weekend will be a wonderful contribution to fulfilling his pledge.

Already Ken is getting opportunities to share the message wider:

One of the things I enjoyed most was seeing all the stories taking shape and growing. From our initial ideas, we worked as a group helping each other. Critical friends. Sometimes it was a case of tip-toeing around when someone was deep in concentration, or making a cup of tea. Sometimes it was a more proactive assistance – listening to a draft audio or helping with editing, pruning – less is more.

I feel very honoured to have seen Helen Bevan’s stories take shape. The stories she will show next week to 2000 people at the 19th Annual International Forum on Quality and Safety in Healthcare in Paris. And I will be in the audience, gleaning any last minute tips for my own presentation! – would be wonderful if you could tweet some support 2.15-3.15pm Friday, 11th April ;)

One wonderfully emotive picture of Helen as an inquisitive little girl was so illuminating – the expression – quirky, already a thinker and a maverick – forming such a natural journey to Helen’s role now as a global health and care innovator.

IMG_9297I love the fact that a photo I took when Helen and Pip were deeply engaged in working together has been included in the final credits. A lovely and very fitting tribute to Pip and Tony and the difference they are making by offering people this exciting medium. Introducing us to a whole new world of possibilities in terms of capturing our unique stories and contributions.

A gathering of equals and friends.
Such different lives and occupations, but all wanting the same things in terms of quality of life and inclusiveness.
Living and learning together.
And learning the most from myth-buster, Ken. Ken recently wrote about his ’12 coping strategies for living well with dementia’ - one of the most popular ‘in my shoes’ stories.

So now, I expect you want to see our stories?
They are being honed and polished. Polished and honed. Postponed?
But hopefully we can share some of them very soon ;-)

Posted in Blogs, community engagement, dementia, education, Gill's Mum, in my shoes, personalisation, well-being | Tagged , , , , , , , , , , , , , , , | 3 Comments

“Understanding our Patients” – a very impressive event in Cumbria!

The thing I like best about Twitter is when it connects people who would not otherwise have come together. Which happens all the time. People with the same values and passions. This happened in Cumbria last week.

Dr Farhan Amin is a very special GP. Working in a tiny rural community, he has a big vision. He understands that people are experts in their own bodies and their own health care and he wants patients to share their expertise with others. To help them do this, he has established the innovative Patient Memoirs site where people can post video stories of how they are coping with long-term conditions or other health incidents and other people can learn and very often be inspired. Take a look – and, better still, post your own story!

I was not aware of any of this until Dr Amin contacted me back in January. He is someone who likes to bring innovators together and he had spotted Whose Shoes® and was quietly insistent that I should come to Cumbria as he wanted to set up an “Understanding Patients” workshop and thought Whose Shoes?®  would be a good way of exploring issues.

Fast forward to last Saturday, 22 March.

I had written some bespoke material as I realised that senior clinicians, who made up most of the audience, would want something challenging.

Something must have worked as instantly the room was buzzing with conversation and nobody wanted to stop for the coffee break!

After lunch, I could relax.

It was time for Dr Amir Hannan, a colleague I had enjoyed meeting when we were both on the Q&A panel at the King’s Fund AGM last year. Wonderful work around digital engagement with patients and making sure that Care Data works for real people.

The rest of the afternoon was devoted to Dr Umesh Prabhu. I had not met Umesh before but had seen how he engaged whole-heartedly with Whose Shoes® in the morning. Now it was our turn to listen to him and we were all spellbound by his ‘straight from the heart’ presentation.

The energy of the event has been captured on Twitter and you can feel that others want a bit of the action. This is how good ideas spread – not by shouting from the rooftops how good they are, just quietly getting on and delivering something of real quality and value.

There was some really good feedback and the buzz continued long after the conference.

And, inevitably, a few more people wanted to be part of the evolving story and joined Twitter!

And some delegate pledges:

The perennial problem:

It is particularly rewarding to receive good feedback from young professionals entering the health care profession, and feeling optimistic that positive change is happening.

I had quite a chat with Michael Wellings and feel that we are in safe hands when passionate people give up their time to learn and connect on a Saturday. AND he is a cricket fan. ;-)

Already more and more people are learning about Patient Memoirs. Already we are planning a follow-up event in the autumn, putting real patients in the room as well as video stories. I am very proud to be part of this team.

And the next audience could be altogether trickier!

Never underestimate the power of patient stories.

Wish me luck and watch this space!

Meanwhile I am off today for my very own weekend of storytelling.

Wish me luck and watch this space!

Posted in Blogs, community engagement, compassion, health, in my shoes, personalisation, TLAP - Making It Real, well-being | Tagged , , , , , , , , , , , , , | 6 Comments

In the shoes of … | Jane Gilliard – Daughter, retired dementia care professional; and now supporter to and advocate and attorney for her father

Whose Shoes?® is conversational. The tools and the whole approach look at issues from different perspectives, aiming to inspire lightbulb moments which drive people to work together for positive change, realising that we all have a part to play and that leadership is no longer about traditional hierarchies. We can all take ownership and contribute in our own particular lives and job roles.

Our ‘in my shoes’ blog series takes the same approach, slowly building the big picture like a jigsaw puzzle. No-one knows how many pieces the big picture has – but each piece adds a new insight. The holistic picture of what good quality of life looks like for people and how different health and social care approaches support or hinder this. The good the bad and the ugly – real stories which prompt others to say “that happened to me too” … or better still “We had a better experience. This is what happened to us – something simple and good that could be replicated elsewhere!”

Twitter is a great way to promote and share these conversations, bringing new people in and telling previously untold stories. This blogpost arose from one of those conversations. When Jane Gilliard commented on the excellent care her Mum had received, the lovely Richard Humphries (who has been a wonderful Whose Shoes? champion) brought it to my attention. Jane agreed to write her story - a very positive End of Life story from a carer’s (daughter’s) perspective. We both saw a strong link to the very popular blogpost written and published anonymously : “In the shoes of a GP… reflecting 0n End of Life care”

So, in the Twitter conversation, Jane said “I must get my piece to you. It gives the carer’s view of a similar situation. And she did…

Jane GilliardIn December 2010 my mother suffered a stroke.  After rehabilitation, she made a good recovery physically, but she never fully regained her cognitive function.  Over time this deteriorated and it was clear she had vascular dementia.  She had always been the social organiser in the household and now unable to carry out this role, it rapidly became clear that my father too had difficulties.  Shortly after my mother was assessed and diagnosed with vascular dementia, my father was also assessed and diagnosed with Alzheimer’s disease.

Jane's Mum & babyFast forward to October 2013.  My mother was by now very disabled by her dementia.  Despite our best efforts to engage her, she would sit most of the day in her chair, with her head in her hands, staring at the floor.  She and my father had earlier made it clear that they wanted to remain in their own home – my mother had repeatedly told me that she wanted to die there.  They have a wonderful carer called Wendy, whom we employ directly.  Wendy visits them 4-6 times a day and does whatever is required.

My mother started to refuse food, and then drink.  Wendy called the GP and there was talk about admitting my mother to hospital for rehydration.  Wendy asked for a further 24 hours to try to persuade my mother to drink – and with her gentle encouragement, my mother started to drink small amounts and to “eat” Complan.

I rang the GP and had a very helpful conversation (I have a Lasting Power of Attorney for Property and Finance, and a second one for Health and Welfare for each of my parents).  We agreed that my mother was not to be admitted to hospital, unless it was for a simple emergency which could be treated within 48 hours and she could be returned home.  We discussed my mother’s views about what she considered offered quality of life, and the GP said she would record our conversation on my mother’s records.

Wendy began to have difficulty helping my mother to get out of her chair.  She rang the Independent Living Team – a joint health and social care initiative.  A physio and an OT did a joint visit to assess my mother and agreed that she should have a rising recliner chair.  It was delivered 3 days later.  My mother leapt out of her chair to greet the delivery man!

The following week, I visited to take my father to hospital.  Wendy told me that they hadn’t yet had to use the rising function of the chair, but they knew that a time would come when it would be useful.  And beyond that, there would be a time when they would need a hoist and a hospital bed in order to continue to support my mother at home.  At 11:15 that morning, I left with my father for the hospital.  At 1 pm we left the outpatients department, and I found a message on my phone to say that they hadn’t been able to get my mother out of her chair and had requested a further assessment visit.  An hour and a half later, the OT and physio had revisited to reassess.  They agreed that a hoist and hospital bed were needed, and it was delivered later that afternoon from the depot, which is nearly an hour’s drive away.  In less than 5 hours, my mother had deteriorated, been assessed and the necessary equipment to keep her at home had been delivered.

The following day she was about the same, but the day after she had deteriorated further.  The GP visited and agreed that a “just in case box” should be delivered before the weekend so that Wendy could continue to care for my mother at home.  My mother complained of pain in her back and the GP gave her a morphine patch, which relieved the pain and made her sleepy.  That evening my mother fell asleep and she didn’t wake the next morning – the most gentle of deaths.  My father was with her the whole time.  Wendy and her colleague provided all the necessary care.  The health and social services had worked together to help my mother achieve her ambition of dying in her beloved home.

I’ve worked in health and social care for well over 30 years, and was delighted and thankful to find that the systems can work well together for the benefit of the person with dementia and the family.

My father says he hopes he can go the same way when his turn comes, and I’ve already had that conversation with his GP, the hospital doctors, the social worker and with Wendy.

Lovely to post such a positive story. Isn’t it great when the whole system joins up to deliver things that really, really matter to people!

Posted in Blogs, community engagement, compassion, dementia, Guest blog, health, personalisation, public sector, safeguarding, well-being | Tagged , , , , , , , , , , , , | Leave a comment

In the shoes of … | Shahana Ramsden, during her first few days in her new role at NHS England…

It is with great pleasure that I post another ‘in my shoes’ guest blog today. oliviaCongratulations to Olivia Butterworth, Head of Public Voice, and colleagues at NHS England for recruiting ‘a little gem.’  I am delighted to post Shahana Ramsden’s story at such a pivotal point in what I am sure will continue to be a very impressive and worthwhile career. It has been lovely to have a bit of banter with her new colleagues – they seem a very human bunch. :)

And I am happy to think that encouraging Shahana to engage fully with Twitter and setting her a #10aday target has helped her make some wonderful new connections.

Shahana believes in genuine co-production, equality and inclusion. Not in a theoretical way but in a ‘day-in, day-out, at all times and in all circumstances’ kind of way. When Think Local, Act Personal (TLAP) were interested in a partnership to produce an electronic version of  Whose Shoes?®, fully aligned to the ‘Making It Real’ agenda, it was Shahana who made sure that the proposal had the full support of the National Co-production Advisory Group; I applaud this authenticity and consistency. It is not surprising that they will miss her.

In October 2013, I got to know Shahana better when we attended the 23rd European Alzheimer Conference together and presented a wildly over-subscribed Whose Shoes? workshop to a diverse international audience.

You can see the video of our Malta workshop here. We had a great time – working hard and playing hard and making new friendships. Here is Shahana’s story….

ShahanaThe timing was perfect as I started my new role as Patient and Public Voice manager with NHS England, just a few days before the Health and Care Innovation Expo. This felt like an accelerated induction programme, bringing together stakeholders across Health and Social Care to share and explore innovation.

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I arrived to the buzz of NHS Expo feeling slightly dazed. During my two day journey through the conference, I felt that I had been visited by a benevolent version of Dickens’s ghost of Christmas past, as I met people from my past, present and future working life each with a reminder of where I had come from and where I want to be.

I wondered into the Community Space and immediately bumped into a former colleague, Ranjit Sengera from my time with the National Delivering Race Equality in Mental Health (DRE) programme. One of the lasting impacts of DRE had been the introduction of 500 Community Development Workers who engaged directly with communities at a local level to improve outcomes for people with Mental Health needs. It was appropriate, then, that my unexpected reunion with my former colleague took place in the Expo’s Community Space which had been transformed into a beautiful community garden area alive with conversations, pledges and feedback flags- a symbol that the importance of engaging the whole community is a core part of NHS England’s Patient and Public Voice vision.

In spite of the vastness of the place (the building is a former Manchester railway station) I found a cosy Dementia Cafe where people were huddled around Gill Phillip’s colourful and innovative Whose Shoes?®,board game. During Gill’s engaging session I was reminded of how a simple concept, authentically delivered can capture the attention of busy professionals who are prepared to take time to “Walk in the Shoes” of people living with dementia.

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Whose Shoes? workshop at the 23rd European Alzheimer Conference in Malta, October 2013 – somewhat oversubscribed!

I remembered that one of my best moments working with Gill had been co-delivering the Whose Shoes?®, workshop in Malta. Alzheimer Europe demonstrated that where leaders are willing to engage people in co-production it is possible to overcome language, political and organisational barriers to achieve authentic engagement.

Img_8056aAmongst the busy crowds of people, I finally made it to a session chaired by Giles Wilmore where the Patient Leader Alison Cameron and the wonderful Liz Evans provided us with a thought provoking workshop – using the metaphor of a mountain to show how organisations can climb towards true coproduction and to highlight some of the realities of that process.

This triggered thoughts of my previous role with Think Local, Act Personal where I have been lucky enough to work with a group of warm, dynamic and supportive people who use services, patients, carers and families in the National Co-production Advisory Group. Many members of the former NCAG will have seen different health and care systems over several decades, tolerated and supported different engagement leads and will also have seen the cycle of change repeat itself more than once. I have always been conscious that, as paid professionals, we can move onto another role. However the people who use services and patients do not have a choice to walk away from their situation or condition.

The last seminar I attended, led by Alice Williams and Nasser Quhill from the NHS England Patient Engagement team, was an interactive workshop where the views of a range of people were being welcomed and actively listened to. The two concepts being explored – NHS England’s Participation Academy and “People Bank” could open up a range of opportunities for people who use services and patients to be involved in co-production, and where people can build on their skills. These were all very encouraging signs for someone like me, as I know I have very high expectations of what genuine engagement should look like.

During these first few days in my new role, I find myself testing the culture and working out what systems are working in favour of co-production? What feels comfortable? Which areas are grating against my values? And although it is early days for me, I am trying to piece together all my previous experiences so that I can build on the principles and values of co-production and practical ideas for implementation that I have refined throughout my career.

Img_7985aSo the Dickens’s ghost of Christmas past helped me to gain a brief glimpse of a positive future where innovation is welcomed, and where people are actively listened to. It is early days for me in my new role, but I have to say that for the time being, I am excited about what the future holds!

Follow Shahana on Twitter @shahanaramsden

Posted in Blogs, co-production, community engagement, dementia, education, Guest blog, personalisation, social media, TLAP - Making It Real, well-being | Tagged , , , , , , , , , , , | Leave a comment