#Woopdedoodle!* The top 50 ‘HSJ Inspirational Women, 2014′.

Gill - Img_0133cThe last couple of weeks have been a complete rollercoaster for me with one of the highest ‘highs’ and lowest ‘lows’ of my life within a 24 hour period. I have been very moved by the response to my tribute to my dear friend Lindsay Kyle, particularly from her family and friends.

Well today I want to share the high point –  the huge honour of being listed as one of the top 50 HSJ Inspirational Women, 2014′.

#Woopdedoodle is the ultimate hashtag. It was devised by my inspirational friend Kate Swaffer for sharing our favourite moments. The opposite of our ‘too busy basket’ ;-)

I am only sorry that Lindsay – and indeed my Dad and my Mum-in-law, who were also big ‘believers’ in Whose Shoes? - were not here to share my achievement. They have all seen the sheer hard work, (blood sweat and tears!)  that goes into building a successful story.

It is actually quite a funny story as, believe it or not, I only heard anything about it (and then only indirectly) 24 hours before I was due in London for the Awards evening. As I said in my last blog, “life is what happens when you are busy making other plans” and this John Lennon wisdom has my name on it at the moment.

After a really hectic couple of weeks, I had this period pencilled in my diary as a quieter time; a chance to catch up on a few things. The one long-standing commitment was a lovely community workshop with Ken Howard at Temple Balsall, a beautiful rural village church where the Magenta Vicar, as I fondly nickname her, fascinates me. She is a colourful character in every respect and knows how to make interesting things happen. A constructive boatrocker; and I look forward to working with her further. ;-)

I will include a few tweets about this as an insight to my work. The award is nothing in isolation; it means a lot to me because it recognises all the wonderful people I work with, such as Ken Howard, and how together we are making a difference.

Dan Img_1306aWhat with an unexpected visit from our best mate from Sydney, a panoply of medical appointments for my Mum and much else in between, my week was already changing from a quiet week into yet another crazy week.

And then I started getting some strange DMs (direct messages) on Twitter. “Yay, tomorrow #hugs!!” was the gist of them. As the news became clear, it led to a bottle of champagne from Dan, our Aussie friend, who again has followed the highs and lows of my ‘journey’ and, if truth be told is a big fan of my mini croc shoes. :) Indeed, he was just admiring the new summer range colours, when the news started to come through.  And no Dan, I won’t let you post any rude comments on my blog, so don’t even try. … It must be an Australian thing as Dan enjoys a lot of banter!

Anyway, I digress.  The short version is that as Alison Cameron and I celebrated her success and planned to post her wonderful blogpost, neither of us had any idea that I was also included on the HSJ list. It subsequently turned out to be quite an interesting communications pathway (polite version) where the organisers assumed I knew … but it did make it all VERY exciting.

So we re-jigged many things and it was with huge anticipation that ‘Mr #WhoseShoes’ and I caught the train down to London. Indeed we had some extra time to anticipate – thanks for that London Midland. ;-)

I was thrilled to find that a lot of women I know and respect hugely were also included on the list. It turned into a wonderful tweet-up! And, as usual on such occasions, I was struck by the two fairly distinct groups in the room – the social media tweeps hugging with delight at meeting fabulous Twitter buddies, often for the first time – and those more congruent with the formal atmosphere that would traditionally surround such events.

As I looked around the room and picked out people
I knew, I thought about the stories behind all the different connections and how they would be different for everyone in the room.

A further example of the rich tapestry of inter-connecting lives, and how we all influence each other, that struck me so vividly at Lindsay’s funeral.

So, here are just a few of my personal cameos about some of the other award winners:

Dr Kate Granger:

It was wonderful to meet Dr Kate Granger and other 'fab tweeps' at the Quality and Safety Forum in Paris.

It was wonderful to meet Dr Kate Granger and other ‘fab tweeps’ at the Quality and Safety Forum in Paris.

An obvious inclusion in the list, I was very sorry indeed that Dr Kate Granger was not well enough to attend but her name came up everywhere I went. I love the simplicity of #hellomyname is – and indeed the simplicity of Kate. Describing herself as ‘just a normal Yorkshire lass’, and believing this,  is arguably what makes her so special.

HSJ Inspirational Women 2014

Alison Cameron

Inevitably a lot of very senior people, in traditional roles, are included on the list. I have seen some criticism of this asking why more ‘grassroots’ people are not included – but it makes sense that many of the people who inspire us as senior leaders start life as inspirational ‘grassroots’ people. Anyway, how wonderful in this context to see recognition for Alison Cameron and Yvonne Newbold – two people who have SO much more to offer than a label of ‘Patient’ or ‘Patient Leader. Having become friends with Alison and followed her story so closely, it was nothing short of magical to see the pride in her Dad’s eyes that night.

Please take the time to read Alison’s story here on my blog or (hot off the press) her “Coming out of the box” story for the British Medical Journal.

Andrea Sutcliffe
Andrea & Gill Img_0047cAgain I am a big fan of Andrea Sutcliffe. Quicker off the mark than me, Andrea has written her own blog about the awards evening and it was lovely to see that it meant so much to her too. I would think being Chief Inspector for Social Care can be a lonely place sometimes but the ‘down to earth’ manner in which Andrea gets on with things and relates to ‘ordinary’ people makes her a breath of fresh air, as I wrote in my blog quite some time ago. I was delighted to see this being recognised – and indeed it felt healthy that someone so ‘senior’ in social care got a health-based award. There is a God – the systems are starting to speak to each other! ;-)

Kath Evans
WS Coventry Img_0024cWhat to say about Kath Evans? As I said this is about personal cameos and nobody else will get it if I describe Kath as “the lady with the pink shirt” – except my Mum @Gills_Mum, as this is my epithet for Kath when Mum struggles to keep up with all the exciting people I talk about! They met when we held a Whose Shoes? event at the NHS Improving Quality centre in Coventry. Mum, as everyone else, remembered Kath for her warmth and enthusiasm. And Kath and I sowed some early seeds for some work together around Patient Experience in maternity services, which are now coming to fruition. Watch this space…

@AnnieCoops, @KathEvans2 and @WhoseShoes #TwitterFriends

@AnnieCoops, @KathEvans2 and @WhoseShoes #TwitterFriends

Anne Cooper
Annie CoopsAnne Cooper, or @AnnieCoops as she is affectionately known, is another thoroughly genuine, engaged, enthusiastic NHS champion. But again the cameo is very personal. We had wanted to meet for ages. I had tweeted that Anne was ‘top of my Twitter stalking list’ – this must have been after I finally met Richard Humphries ;-) – and we finally met at the Florence Nightingale conference in London in February this year. I heard Anne speak knowledgeably and engagingly about informatics and learnt a lot – including confirming my belief that a good talk is 90% the speaker and 10% the topic because passionate people bring their topics ALIVE! Anyway, I remember nicking Anne’s shoes and pinning them on my Pinterest board.

Dr Nikita Kanani

Nikita is someone else I met for the first time at the Quality and Safety Forum in Paris. At this event, we seemed destined to keep missing each other. With 3000 delegates, all the DMs in the world and messages saying “meet you at the back at the end of the session” can be very tricky. So it was lovely to chat with her on the awards evening, celebrating with her very proud Mum!

Teresa Chinn

Theresa and Gill Img_0121cTeresa and I first met at the Dementia Round table event in London last December. We also found ourselves lurking in the same audience when Dominic Stenning and Victoria Betton did a talk about social media at NHS Expo. I think @WeNurses is such a great idea – again simple and effective. And it was lovely to meet Dawn @WeMidwives too! And now we have @weschoolnurses @wechaplains and @weallsortsofotherthings!

Dr Tammy Angel

I have only just met Tammy, on my recent visit to west Hertfordshire NHS Tust but she made a huge impression on me, working tirelessly and imaginatively for people living with dementia. Hoping to post a guest blog soon telling you more about this great work :)

Dr Alys Cole-King and Yvonne Newbold
Yvonne-Newbold-HSJWomen-300x266Two more  inspirational women, both of whom I knew from Twitter but hadn’t met in person until the awards evening. Yvonne was honoured for her Parents’ Handbook, Alys for her powerful “U Can Cope” campaign.

And how do I know all these wonderful people? Twitter!

So what? This is the powerful question I keep asking in my work…

Teresa Chinn, Dawn @Wemidwives, Kath Evans, Gill Phillips, Alys Cole, Anne Cooper

Teresa Chinn, Dawn @Wemidwives, Kath Evans, Gill Phillips, Alys Cole-King, Anne Cooper

I will be thrilled if the HSJ recognition helps me gain more opportunities to do the sort of work I do, and love doing,  with Ken. To extend it and work with people like Alison; young people like Adam perhaps. My work is all around equality and inclusion. I love working with Kate Swaffer and the Dementia Alliance International; connecting people and sharing good practice globally is a big part of our vision.

And despite some people ‘knocking awards’, it was really lovely to see the stream of congratulatory tweets pouring in – and even more direct messages. Here are a small selection and I am not ashamed to say that it was absolutely lovely and I feel that the vast majority of people I connect with are very generous and mutually supportive.

I really appreciated them all and thank you to whoever it was who nominated me! Twitter rocks. ;-)

Posted in Blogs, co-production, community engagement, compassion, dementia, health, in my shoes, personalisation, social care, social media, TLAP - Making It Real, well-being | Tagged , , , , , , , , , , , , , , , | 2 Comments

“Life is what happens when you are busy making other plans” – my tribute to my dear friend Lindsay

I chose this title, taken from the song ‘Beautiful Boy’,  because I remember vividly how completely gutted I was when John Lennon died. I remember the stuffy senior manager at work who thought I was on another planet. It just shows how we all influence each other’s lives and carry these little cameos forever…


It has been a rollercoaster week with one of the biggest ‘highs’ and lowest ‘lows’ of my life within a 24 hour period; neither of them planned. I would like to write about both of these but will choose today (Sunday) to share a personal story and keep the ‘professional’ story, about my inclusion on the ‘HSJ Inspirational Women, 2014 list,’ for later.

IMG_5958As regular readers will know, I have been knocked to the core by the death of my wonderful best friend Lindsay Kyle. And it was her funeral this week.

When people asked me what time the funeral was, I said “all day” and effectively it was.

I certainly had no plans to do anything else and it provided a much-needed opportunity to process and reflect, to grieve and to celebrate. Time and space for proper reflection is all too rare these days as we all bustle away with our busy lives.

IMG_5959Along with a few other very close friends, we were very privileged to join the family for the whole day in what was the most wonderfully sad but beautiful day of remembrance. During the course of the day, we all contributed, whether by reading or singing or playing an instrument or just being there as a huge comfort to others. Lindsay’s younger son, sang a wonderful rendition of “Sure on this Shining Night.” How a 17 year old can sing like that at his Mum’s funeral, immediately after his Dad’s very moving tribute, when those around are in tears totally beats me – well done Billy Kyle.

I was not sure whether I would be able to read my poem, but I did as Lindsay would have loved us all joining in and doing our best.

It made me think what was best about family, friends and community as we grieved together, laughed together, sang together and reflected on a glorious sunny day with Lindsay’s very talented musical family singing and the jazz band, of which she was a keen saxophone player,  playing in her honour. Basking in the evening sun, we were jamming until late outdoors with much laughter and a fair amount of wine; it all reminded me of what really matters in life and how lucky we are if we have such loving relationships.

Alison, one of Lindsay’s friends from her university days, now working for the BBC and a wonderful speaker, gave a tribute that really struck a chord with me and my philosophy about connections and how we all influence each other’s lives. She told tales of the play Lindsay was involved in with their mutual friend, the late Anthony Minghella. Already the threads were crossing over into my life as through Twitter I have met his lovely sister and talented jazz singer, Edana Minghella.

We have shared stories about Lindsay starring in Anthony’s first recognised play, written during student days. Lindsay played ‘the Sophisticated Lady’ in Anthony’s ‘Möbius the Stripper’ at Hull University; she showed me the drawings she did at the time, as they planned the costumes. Colourful tales of risquė outfits and being busted by the police… apparently they decided not to press charges. ;-)

Lindsay was a very talented artist and Alison used the image of paintings to structure her story. As she ran through a series of wonderful cameos taken from her long friendship with Lindsay, she pointed out that we would all have our own pictures. Each picture would be different, reflecting our own individual and very personal memories. And yet the similarities between the paintings would be considerable – recognising the same lovely, vibrant, colourful, stylish, natural person in whose life we had all had the privilege to share.

Her house is full of her paintings and as I look round mine, we have quite a few too. And my Mum. And her other friends. And countless painted cards and gifts. And recordings of her singing. Her spirit is everywhere and lives on through her talented, wonderful boys and the fabulous example she has set in how to live a generous and fulfilling life. And  that is really lovely legacy.

Lindsay wasn’t a big fan of social media. She was a ‘here and now’ kind of girl, enjoying the moment and those immediately around her. She didn’t really ‘get’ my love of Twitter and yet was fascinated by the tales I told of real connections, friendships and the rich tapestry of inter-twining stories and lives.

In my head, I frequently compared Lindsay’s experience of living with terminal cancer to that of Dr Kate Granger, whom I have now had the privilege to meet on several occasions. I really admire Kate as a wonderful human being dealing with something so difficult, as well as all her actual achievements. I have thought about the added insights and knowledge that being a doctor brings – good and bad – and similarly the extra dimension of having a huge loving ‘Twitter family’ as well as your real life family and friends. No conclusions – there are none really, just reflections. I am doing a lot of reflecting at the moment and as far as I can see there are no real answers to any of it other than choosing your own path and being true to yourself, as both of these wonderful ladies have been.

Lindsay’s experiences of cancer and her treatment have been used directly in some of my Whose Shoes? scenarios, as they are all sourced from real people and real experiences.

Indeed her voice is used in some of the cards in the electronic version. It will be hard but very special indeed when these play out in my workshops in the future. You can listen here to her powerful call for professional health workers to walk in her shoes…


I will leave you with some advice from the late Anthony Minghella, in the words of his brother Dominic. I know Lindsay would be of the same mind:

“You should never let a day go by without creating something. That means something new. That means living, not dwelling.”

So perhaps I will set myself a goal. Rather than sitting miserable, missing my friend, I will create something new every day, starting with this blog which I hope will serve as a fitting tribute.
How about you?

Posted in Blogs, cancer, end of life, health, in my shoes, personalisation, social media, well-being | Tagged , , , , , , , , , , , | 3 Comments

In the (exceptionally purple) shoes of… Alison Cameron, #boatrocker extraordinaire!

Regular readers of my blog series and followers on Twitter will know the name of Alison Cameron and share my huge admiration for her. In July 2013, I published in two parts her powerful, moving and indeed unforgettable story: Part 1 and Part 2. It has attracted huge interest and become an iconic tale of how a strong, highly educated and talented individual can be rendered totally passive by the ‘system’ and the devastating effects this can bring. If you haven’t already read these, I strongly advise you to do so before reading another word.

It was very brave of Alison to write her story but it was also scary for me. It was clear that although she had made huge progress, Ally was still in recovery from very serious mental health problems. Ally’s story was incredibly honest and raw and we stayed in close touch to make sure that she had no regrets and to help as best I could, at least as a friend, as she navigated the continuing rollercoaster that she describes so vividly.

Fast forward to 9 July 2014…  It is a huge honour today to publish this blog. An **exclusive** that leaves me smiling like the proverbial Cheshire Cat. Goodness knows how a certain Scottish gentleman will be feeling…

Out of my Box – add photos

BOxesMy guest blogs for Gill @WhoseShoes were a tough write for me. It was the first time I had written in detail about my old career working on international projects and linked it to my thinking these days. I spoke about the Half Life I felt I was living – the before when I had my job title and what I thought was a safe career progression, and the after when it seemed my identity had to be handed in as the price for becoming ill.

The overwhelming response I got from Gill’s incredible network helped me get over my fear that I have nothing of note to say, and certainly nothing to give. It challenged my perception of myself as “throwaway” – destined to be the scourge of Daily Mail readers everywhere, a sofa dwelling skiver, bed-blocking “heart sink patient” and nothing more. For although I have long been a campaigner against stigma when it comes to others, I have to admit to being my own worst critic – buying into the prejudices of others, a perpetrator of the harshest of self stigma rooted in shame at having failed, at having “allowed” myself to become ill.

Co Production It's About TimeSome time ago I wrote an article for our friends at @SITRApolicy the image they chose to illustrate it for the cover of their journal was of a woman trapped in a specimen jar.  The question I ask myself now is to what extent was she trapped because she had been put there, or was she in there by choice for protection?

One of the biggest lessons I have had to learn that the boundary breaking I advocate is out of comfort zones for all of us. That we are all protected by the familiar and change can be scary. My “patient” box was rather bleak to be in for as long as I have, but it was familiar so to some extent I felt safer staying put.

Since I last wrote my thoughts for Gill a lot has changed. I have been asked to do more and more, to talk on my experiences and what they can tell us about what could and should be changed in the services on which we depend. It has been overwhelming at times, stressful, scary and exciting in equal measure. My default position is to want to hide somewhere quiet. I am an introvert, believe it or not, and it is going against the grain to get up and talk about some of my darkest experiences in front of large groups of people. However, my motivation is that the fifteen years since I was diagnosed with PTSD and started the descent into oblivion MUST mean something or this will mean that a significant period in my adult life will have been meaningless. For that reason I force myself out of my box, and cross over the minefield on a regular basis.

To begin with a lot of it was based on “survivor guilt” – not only were my colleagues killed, since becoming ill I had also met patients in the same position as me who fell through the cracks between services. I climbed out somehow and they were not able to and are no longer here to tell the tale. I felt an obligation on some level to make up for surviving when they didn’t.  One of my wise and tough teachers in life challenged me on this. I realised that he was right. Maybe guilt at being alive used to be my sole motivation but this was no longer the whole story. The new element was that I had started to love what I do. I realised how much I was getting out of meeting people through this new work. As frustrating and tiring as it can be, there is nothing quite like that moment when what you have said creates a lightbulb moment in a professional about working in a new way, or when a fellow patient realises from hearing my experiences that their diagnosis need not be the end, but a massive new beginning.

And then there’s the people I get to meet. My darkest times were all about isolation. Unless you were preying on my vulnerable state, worked in an Off Licence, or were a paramedic or A&E doctor, I would not be talking to you. I was literally in my own twilight zone – a bleak and lonely post apocalyptic landscape. Thanks in no small way to how I have taken to Twitter and Twitter to me, this is no longer the case.

My first Tweet Up (real life meeting with a Twitter contact) was with @ClareOT. I was so overwhelmed by this incredible woman in glorious technicolour that I ended up blubbing – I so identified with every word she said. Then there’s my Role Models in Disruption @ShirleyAyres and @HelenBevan. The #patientleaders team go without saying – @MichaelSeres, @anyadei, @GleefulKaz @patientleaders. Special mention must go to @patientleader. Dominic and I got off to a really dodgy start when he challenged something I had said. An amazingly powerful conversation later on LinkedIn led to what has become something of a Mad Auntie/Wayward Nephew relationship and we had our first Tweet Up in a henge in Huntingdon surrounded by druids, bellydancers and men in tights. It’s a long story but hooray for the unexpected that is always just round the corner with Twitter.

Alison Cameron, Gill Phillips and … @Gills_Mum ;-)

Special mention has to go to @WhoseShoes and @Gills_Mum. Gill is the best connector of people I have ever met and I love her work for its authenticity and barrel load of quirkiness. I know where she gets the latter from having become firm friends with her Mum. We have had the best chats covering everything from “Scots Wha’ Hae” to comparing our local duck populations. I got to meet her recently and while it is possible to make real friendships on Twitter, you miss the twinkle in someone’s eye!  These two incredible women have done so much to encourage my writing and this has been a huge factor in my being able to do what I do now.

This is starting to sound like an acceptance speech for an award… which is funny really as last week I got an email from the Editor of the Health Service Journal containing this:

“I am writing to congratulate you on being selected by the judging panel onto the 2014 HSJ Inspirational Women in Healthcare list. 

The list, which launched last year, celebrates those women in healthcare who are driving transformational change within the NHS, both in clinical and non-clinical settings.  With our partners, NHS Employers and NHS Leadership Academy, we will be celebrating inspirational women in leadership and top executive roles, but also those making a difference on the front line of the NHS and within middle and senior management positions”.

Alison Img_0107I have no idea who nominated me but there are a few Tweeters whom I suspect! If it is you I can’t thank you enough.  It is quite overwhelming particularly considering where I have come from to be considered as having made a difference to Health and Social Care services.

You may wonder why these awards should be necessary. Actually they shouldn’t be. However, I was privileged to attend a HSJ Healthcare Leaders’ Summit last year and was struck at how few women relatively speaking were present and further down the pecking order still were people labelled “patient”.  Anything that provides role models for anyone whose label makes it more difficult to be heard is a good thing in my book. If it helps even one woman held back by stigma from others and herself to break through that, I will be very pleased indeed.

Having my Dad with me at the reception to publish the list of this year’s list is the most important thing for me. Dad used to come down from North East Scotland with my late Mum to visit me in hospital having once again found myself in a life threatening situation.  Or worse, he would come down not knowing where I was or in what state he was going to find me. I can’t change those things or ever fully make up for the theft of their peace of mind but what I can do is make living amends – to continue with my recovery in a way that makes a difference for other people.

When I concluded my recent speech on the final day of the NHS Graduate Scheme for 2014, I urged the trainees to break down the walls of the boxes while they are still cardboard.  Fear can cause the walls to “petrify” into concrete, then we have defensive bunkers – the silos with which we are all familiar.

With the help of the vast network of friends I now have largely through Twitter, I am finally getting the courage to break down the walls of my own box.  There are scary but exciting times ahead but as Seth Godwin said

“If it scares you it might just be worth doing.”

Postscript: I am very happy to announce that, as it transpired… I got an award too. But that is another story. I will blog about it shortly, but as you can see Alison and I were pretty chuffed about it!

comfot zones

Posted in Blogs, co-production, Guest blog, health, housing, mental health, personalisation, public sector, social care, social media, TLAP - Making It Real, well-being | Tagged , , , , , , , , , , , , , , , , , , , , , , | 4 Comments

Our NHS ChangeDay campaign is gathering pace…

The last couple of weeks have felt very significant in pursuing our NHS Change Day campaign pledges, connecting people living with dementia and helping them have a voice.
See the person Img_5709aI have been working intensively with Ken Howard. It has been wonderful to help Ken have a variety of opportunities to get his important messages across, including publishing his powerful and moving new film and blog on Friday. In turn, it has been very rewarding to see people really listening , particularly those who are in a position to influence major change. As someone living with younger onset dementia, Ken has an urgency that really makes people sit up and think. The simplicity of his messages mean that it is hard to sit on the fence and do nothing. It is wonderful to see him growing in confidence… and self confidence.

 So what have we been up to?

I loved being able to involve Ken in our final workshop as part of our Dementia Friendly Communities programme in West Kent.

I have written several blogs about this and there has been a huge amount of energy both in the fantastic events and team involved and as reflected through social media. Many people have said they have felt as if they have been there and I guess this is a great way of making a much wider impact. Sharing the sessions through blogging, Twitter and Pinterest reaches the parts that traditional projects cannot reach! I think these informal networks and new ways of connecting with people are a key part of the powerful vision but Helen Bevan set out last week in her enchanting and engaging 2024 film.

Certainly it was as if Ken had been there in Kent at all the sessions because we showed his wonderful film (like Helen’s, made with the help of Patient Voices) at all our sessions.

Ken has become a bit of a celebrity as his myth busting messages, symbolised by his Harley motorbike, are now immortalised on all the graphic records that were produced!

But Ken in person came down to the final workshop. We had held him in reserve as I was very determined to get local people living with dementia involved in all our sessions. It is all too easy to just keep including the same people and not realising others also have a fantastic contribution to make, if only they are given the chance.

Sandra Springett and the team in Kent have risen to this challenge and I’m delighted to say that we have succeeded in this goal, and indeed in all aspects as far as I can tell. The formal evaluation, including reviewing all the wonderful pledges made as people took ownership, is now underway. We are looking for ways to keep the fires ablaze and spread further afield. It is odd when the end of a project feels more like a beginning… ;-)

It was great that we had a couple of people from our emerging maternity project

And Ian McCreath came from the National Alzheimer’s Society. 

Ken was really thrilled that Ian listened very seriously to his simple but powerful ideas about peer support. And so was I. ;-)

This is central to our NHS Change Day pledge (more of that anon.)
We are looking forward to taking these ideas forward.

We also had a series of meetings in London, each with direct outcomes.

Firstly, I was delighted to introduce Ken to Pippa Kelly (‘writer, campaigner, Mum’).

You may have seen the wonderful blog that Pippa wrote about Ken as a direct result of this meeting. If not, I strongly recommend that you read it here.

We then met with Alex and Mike from Baobab Therapy and discussed ideas for a myth-busting Whose Shoes? event in Essex in the autumn.

And finally we met a researcher who is interested in innovative approaches. There seem to be several projects interested in innovation in dementia and collating similar information at the moment - I wonder if they will get together…

Ken celebrated his 60th birthday and I think enjoyed rocking into the next decade on his precious Harley. Happy birthday, Ken!

Meanwhile, I went off to visit Samantha Jones and her team at West Hertfordshire Hospitals Trust.

There was no set agenda, just a genuine and exciting interest in each other’s work. If I tell you that Samantha knows her onions, that will set the scene. And she does.

We met in person for the first time when Sam was speaking about the Onion scheme at the Quality and Safety conference in Paris in April and I was presenting Whose Shoes? later in the day in the prestigious Amphiteatre Bleu  of the Palais des Congres. I was impressed by the whole concept of Onion as it represents a regular, consistent, transparent system of improving Patient Safety and Patient Experience. It was definitely worth leaving home at 6.am on a Monday morning and braving the M1 and I really enjoyed seeing a vibrant session in action and the insights that it gave into a dedicated team tackling the realities of an over-stretched acute hospital.

Senior staff were very generous with their time and I spent most of the day there, exploring in particular dementia-related care and visiting the oasis of calm that was the new Dementia Suite, named after and officially opened by our very own #hellomynameis Dr Kate Granger.

On a sunny day, it was a pleasure to hold a mini Whose Shoes? session in the sunny garden!

I have no idea what this visit will lead to but I have good vibes as sometimes you just find a bit of energy and synergy that is a bit special :)

I was only sorry that I didn’t go a few days later as the official opening of the garden looked great fun! And they had cakes!

But I couldn’t have gone then because I was too busy plotting and planning with Ken.

Last Thursday and Friday we had two big events that, if we had stopped to think about it, were way outside our comfort zones. But we didn’t; so they weren’t ;-)

On Thursday we presented an (almost) Pecha Kucha at the ‘Innovations in Dementia’ conference at the Barbican in London.

We were thrilled to be part of a panel of ‘small’ dynamic innovators, herded together by the inimitable Sarah Reed who presented her wonderful REAL communications work throughout the day.

This event really deserves a blog on its own but I will just pull in a few tweets to give you a flavour.

As for our session, suffice to say that potatoes, Scrabble, motor bikes and Ken’s sartorial elegance all featured.

On a very hot day, Ken’s choice of shorts proved to be a winner and he promised some challenging behaviour if anyone tried to make him wear a suit. Yes, you can probably see why I love working with this guy.

And all of this was feeding beautifully into the main event which was the wonderful 12 hour WebEx on Friday 4 July celebrating the impact of NHS Change Day.

Ken and I were hugely honoured to be invited to speak live for 45 minutes about our campaign and what we are doing to fulfil it.

We were not short of material. I think a little film is going to be made of this so I hope they capture some good bits, but it felt buzzy and fun. We were initially invited to have a separate slot each but I am glad we stuck our necks out and asked to do the whole thing as an informal conversation. We had never done this before but it felt right as everything we do is about informal conversations. I know Helen Bevan and the NHS Improving Quality / Horizons Team love #boatrockers so I hope they liked the result.

And of course, we turned up on the Harley… which in itself may well lead to a new opportunity it seems… ;-)

As you can see we have some fun. I leave you with this lovely message that Ken sent me over the weekend. It made me smile. I hope you enjoy it too.

If you like what we are doing, join our campaign and help us find more opportunities for us all to LISTEN to people living with dementia and help them enjoy a good quality of life, not a ‘mental death sentence’.

As Ken now does.

Posted in Blogs, co-production, community engagement, compassion, dementia, in my shoes, personalisation, well-being | Tagged , , , , , , , , , , , , , , | 1 Comment

Ken Howard says you CAN live well with dementia. Building on our NHS Change Day campaign pledge!

Ken Howard has important messages to share about living well with dementia and we need to listen. Ken has already shared a wonderful blog, detailing his twelve personal coping strategies. Today he wants to say a big “Thank you” to three people who have helped him with “Wow” moments along the way. Here is the story…

Back in March, I received a very moving email from Ken.

Hi Gill I wrote this down after meeting Liz again
after 8 years
it was very emotional
it made me realise that we make changes
to people that we never know about
this is me trying to put it right
with the very first people who
helped me to become me again

do you think it is ok

please comment

“People who helped me to become me again” - “Wow! What do you say?

Ken sent me some slides and the following text:

My three Mantras

I recently met my friend (crystal) Liz for the first time in 8 years

She had no idea the impact that one comment she made has had on my life

When I was first diagnosed Tina from the Alzheimer’s society came to visit me at home

She also made one comment that changed my life without realising

The third comment came from the Dr who oversees my care I have told him how important it has been to me

So maybe as we go through life trying to help and change things we get very frustrated because we think nobody is listening

People are listening I believe, but very often circumstance does not give them (us) the opportunity to say

How true! We often do not think to or perhaps get the opportunity to thank people who have a massive influence on our lives.

With Ken’s permission, I was going to publish his words and slides as a blog. But then we got the opportunity to go on a wonderful ‘storytelling weekend’ with Pip Hardy and Tony Sumner from Patient Voices and Ken turned these slides into a short film.

I was very privileged to show this film for the first time during my presentation at the Quality and Safety Forum in Paris and also at many Whose Shoes? workshops since, particularly our Dementia friendly Communities sessions in Kent, but we have not yet posted it publicly.

I wanted it to have maximum impact because it is special. Ken is special – particularly in the passion he has to share his experiences of living with dementia, how he has climbed back from the dark times (literally) after his diagnosis and has an incredible urgency about sharing what he has learned.

So here is Ken Howard’s wonderful film to coincide with the day we do our live WebEx talking about the impact of our NHS Change Day campaign.

You may remember our ‘Google Hangout’ at NHS Expo? Well, today we have a 45 minute slot in the all day (8am to 8pm) WebEx Jam!

How cool to have a second chance to tell my (grown-up) kids about something they might not have heard of!! A WebEx Jam, eh Mum?

It is fantastic that we are getting more and more opportunities to talk about the progress of our campaign.

Only yesterday, we were at the ‘Innovations in dementia’ Barbican in London, co-presenting a Pecha Kucha… Don’t worry, all will be revealed shortly. I think it was filmed, so if it is not toooo embarrassing, I will publish it in a blog shortly.

But today we need to focus on our WebEx. Please join us live today 1.15 – 2.00pm.

And Ken’s approach is making waves. Take a look at this powerful tweet he posted about his Dad. it caused a storm of RTs, ‘favourites’ and strong comments. Keep going, dear Ken – we need a few more storms to get the ‘remember the person’ message embedded in health and care services!

P.S. Happy birthday Ken. Somehow I think the swinging 60s will have a lot to offer for you!

You can read an excellent blog about Ken Howard, published last week by Pippa Kelly here.

Posted in Blogs, co-production, compassion, dementia, Guest blog, health, in my shoes, personalisation, social media, well-being | Tagged , , , , , , , , , , , , , , | 1 Comment

How are you supposed to feel?

How are you supposed to feel

When your best friend dies

Of cancer.

I don’t know how to feel

It doesn’t feel real

Empty inside

I cannot hide

The pain.

Never again will we laugh and chat

About this and that

Putting the world to rights

Wonderful times

Unforgettable times

All come to an end.


My friend.

We talked and listened

In equal measure

Taking real pleasure

In each other’s lives

Sharing trials and tribulations

Countless celebrations.


And as the kids grew

We always knew

We shared something special and real.


My head is awash with memories

Random cameos.


The more we love

The harder it is

To let go

But I know that in time I will smile

Because Lindsay Kyle

Was my friend

And we had so much fun.


Posted in Blogs, cancer, end of life, in my shoes, personalisation, well-being | Tagged , , , , , , , , , | 9 Comments

The energy is building as West Kent embraces dementia friendly communities!

Thank you to all of you who have been following our Dementia Friendly Communities project in West Kent, in partnership with four local branches of Age UK, sponsored by West Kent Clinical Commissioning Group. We are using new bespoke Whose Shoes? messages that we have co-produced to trigger crucial conversations that are relevant to raising dementia awareness and, even more importantly, prompting appropriate action and ‘lighting the fires’ of positive change.

It is wonderful to see the word spreading – especially via informal channels such as Social Care Curry nights!

I can’t believe that we are approaching our final sessions

I am really looking forward to going down to Maidstone on Thursday with my friend and colleague, Ken Howard, who is living with younger onset dementia and triumphantly breaks every stereotype in the ‘Little book of dementia’.

The ‘finale’ session on 26 June is over-subscribed.
We originally planned for all the events to have 25 people and have already booked 40 people on to this one… many of whom are on Twitter ;-) #tweetup

Ken and I are also looking forward to three meetings in London together, all very different but all giving us more and more opportunities to follow through our ambitious global NHS Change Day campaign pledges.

And we have two fantastic presentation opportunities in early July – our Pecha Kucha presentation at the ‘Innovations in dementia’ conference at the Barbican, 3rd July and then taking part in the NHS Change Day celebrations the following day

It is wonderful to see Ken feeling empowered and recognised as an activist:

We show Ken’s short film at our sessions – Ken explains that a diagnosis of dementia “doesn’t have to be a mental death sentence”

It is particularly satisfying to see the range of ‘legacy projects’ that are sprouting up as a result of our Kent programme – watch this space for more details but there is a strong community flavour and all generations are involved. :)

We are learning so much – including new types of social media – I am experimenting wuth Haiku Deck…

Sandra Springett and Alison Waters are learning Prezi – we are hoping to produce a great Prezi presentation to report on the project:

And Ken and I wondering if 4 July will bring the chance to do another Google Hangout ;-)

Social media will continue to be a key part of connecting different initiatives, joining up thinking and spreading the word…

The standard had been set very high in Tunbridge Wells……

It has been great to see the team move on to new towns and villages, building on the success of our celebratory workshop as part of the launch of ‘Dementia friendly Tunbridge Wells’.

We have some wonderful facilitators on board…

And our new graphic recorders are doing better and better

Our sessions are very inclusive. People of all ages listening and learning together

And we want people who can make a difference to get involved

And then some encouraging tweets I never saw – because it seemed as though I lost a shoe ;-)

You can feel the energy and determination to maintain momentum…

We continue to have a really diverse audience

We relax and have fun…

And enjoy looking at things from different perspectives ;-)

And keeping things simple

And people always like the little shoes!

And so we carry on working together to define and refine the winning formula

And on that note… ;-)

Posted in Blogs, co-production, community engagement, compassion, dementia, education, health, personalisation, social media, TLAP - Making It Real, well-being | Tagged , , , , , , , , , , , , , , , , , | 1 Comment