In the shoes of Elizabeth Meatyard… | Founder of Dining Companions at Kingston Hospital

I first heard about ‘Dining Companions’ through the work I am currently doing with Florence Wilcock and colleagues at Kingston Hospital, building on our #MatExp project and starting to use Whose Shoes? to explore and improve other areas of patient experience. I love simple things that play to people’s strengths and encourage community involvement – so needless to say I thought helping people in hospital enjoy (and actually eat!) their meals was a great idea.

I was hoping to be able to see the volunteers in action on NHS Change Day when Helen Bevan and the team from the Edge managed to visit them but I was too busy abandoning Florence in her lithotomy challenge to go off to run a drop-in session in ante-natal!

I had ‘met’ Elizabeth Meatyard, the founder of the scheme, on Twitter where she is both positive and disruptive – a great combination.

I did finally get the chance to meet her in person when she came along and joined our Whose Shoes? session at Kingston Hospital’s Open Day. Here is the popular Steller story about the day – a story told in pictures!   steller.co/s/4Zab2RE7A3F

I know that the best ideas very often come about as a result of personal experience of something that needs to improve. I asked Elizabeth if she would like to write a blog to tell us the story behind the ‘Dining Companions’ initiative; I had no idea that it would be quite so powerful…

A Little Thing to have Great Impact

Elizabeth Meatyard

Elizabeth Meatyard

As an ex Nurse, I am on the outside looking in although I have a sister, a most wonderful ITU nurse, who returned to nursing following a 10 year holiday!! ( bringing up the kids, ha ha)

We get together far too infrequently but when we do the talk, much to the irritation of the rest of the family, it is always about the NHS. What she would do ,what I would do, if only….

Two years ago, ‘if only’ became a reality, in that I grasped an opportunity to do something about a ‘little’ bit of the NHS which I was unhappy about. Very unhappy about.

The story…

A very dear family friend aged just 55 years had spent nearly 8 weeks in hospital , with a final week in ITU before he lost his battle with life.

He was a very popular guy, a funny man. Nearly 300 came to his memorial service to pay their respects   He had been a central pin in many friendship groups; I could go on and on…

It was a very painful time and so his memorial, a wonderful two hours on an October afternoon was so uplifting, as we ventured beyond the image of the person we had just lost to the ravages of alcoholism and a long fought battle with mental health, and found the person he had been .

So this is a little of the background…

Mental health problems are challenging for the individual , but also for all who know and love that person. Add to that the label of ‘Alcoholic’ and life becomes very lonely, no matter how many of your friends and family are trying their very best to help support and protect you.

Our friend was no different; we supported him through private rehabilitation clinics and tried to continue to do this as he, time after time, tried to pick up the pieces and start afresh. Family life in tatters, job also hanging by a thread we had drawn on every bit of expertise we had within our friendship circle to find a way.

It didn’t work and the final 8 weeks of his life were spent in hospital where in spite of the very best efforts, his cause was lost.

During this long hospital stay we had set up a visiting rota so that someone would spend time each day just being with our friend coaxing, cajoling, trying to find a glimmer of hope.

During the many visits I noticed too often that his meals were left untouched, clingfilm in situ. Salad that he usually ordered but then didn’t manage to eat. Fluids: same thing. The ability to do anything for himself had gone; he was dependent.

This became a focus for me. I could see that mealtimes were problematic on the ward, as there were always quite a few patients requiring help with their meals, and many more who just needed a little encouragement, or simply packets opening (those tomato ketchup sachets are a nightmare). Added to this, staff of course needed to begin their lunch-time breaks.

Should I complain?
NO. My sister was emphatic. Don’t complain, do something about it. Absolutely, what would I achieve by complaining, and what could I achieve if I came up with a solution?

Dining Companions was the solution

Volunteer help on wards at mealtimes specifically to help patients with their meal was the answer. From opening those wretched ketchup sachets to assisting the patient to eat their meal, even a little sing song if it could help!

The plan: to recruit volunteers from the community, but also to recruit volunteers from within the non-clinical departments of the hospital. Seek a commitment to volunteer for at least 1 mealtime session (1hr) every 3 weeks. I wanted to be able to attract volunteers from all age groups and felt that 1 session every 3 weeks was very ‘doable’.

Although this is a little unorthodox, in that most hospitals run volunteer programmes which ask you to give a few hours per week, it works and we have many people who are still working, giving of their time.

The benefits to the patients I hope are obvious, but the additional benefits I would like to just spell out.

Much of the rhetoric around the way forward within the NHS is about the need for a more collaborative approach across the piste. Better decisions will be made if there is connection from the Executive Leadership through to the front line, and it is embedded. This would allow bottom-up decision making to meet with top-down in a much more harmonious way.

So ‘Dining Companions’ at my local Hospital, Kingston Upon Thames Foundation Trust has been welcomed, supported and embraced by the Executive Leadership Team. The Chief Executive Kate Grimes is a regular volunteer on the wards, as is the Chairman Sian Bates, the Director of Communications Lisa Ward, many of the Non Executive Directors , a few Governors , staff within the finance department…. shall I go on?!

If you know Kate, ask her what the benefits are. I hope she would say that ‘Dining Companions’ affords an opportunity to help as part of the ward team, to deliver a better mealtime service to patients. This is so much more useful than set piece observations, because now you are doing it, seeing it, and, understanding it. Taking a different perspective which may give you some very different answers to all manner of issues you have discussed in the meeting room.

Recruiting volunteers from the community is also hugely beneficial as they have a role as a patient advocate. Dining Companions are encouraged to ‘notice’ things that perhaps could be done better. They have an opportunity to voice their thoughts at regular review meetings and of course contact the hospital at any time if there is a pressing need

My own group of Dining Companions is a group of friends many of whom still work, but could offer 1 hour every 3 weeks to help. We have called ourselves the ‘Hardy Perennials’, as this is the ward we have adopted. It is the ward our friend was on, and so it seemed the right thing to do.

We manage our own google calendar so that flexibility is assured. The calendar is online of course and fed through to the Hospital so that they can monitor. It is important to make the point that all volunteers undergo specifically tailored training and of course all the required security checks before being allowed to take part in the scheme.

I have spoken at the Kings Fund about Collaborative Leadership and I am convinced that this is the only way forward. You cannot achieve integrated services unless a collaborative approach is first in place. Hands-on collective Collaborative Leadership will ultimately bring about the changes we need to see in a Modern 21st Century NHS. We must welcome the objections, and embrace those that can help to find a way to resolve the challenges.

Accept that we must take small steps and embed the resultant changes with close monitoring. Never tick a box because there is always more to do.

Elizabeth Meatyard – Vision into Practice. Trying to offer simple solutions to workplace challenges within the NHS.
emeatyard@btinternet  07723 034645 @emeatyard1

Have you got a scheme like this at your local hospital.
How about setting one up? ;-)

Posted in Blogs, co-production, community engagement, compassion, dementia, education, end of life, Guest blog, health, leadership, mental health, personalisation, safeguarding, well-being | Tagged , , , , , , , , , , , , , , , , , , | Leave a comment

In the (cricket) shoes of Alison Cameron… | As she is bowled over…

Alison chained to the railings

Alison chained to the railings. As you do.

If the technology works, this blog should go live at a very important moment. I am delighted, but not at all surprised, that Alison Cameron has been included in the first ever list of HSJ Patient Leaders. And I will be there with her, as her guest in Birmingham, chatting to her lovely dad and enjoying every minute.

I was delighted to nominate Alison and also one or two others who have been successful, including my good friend Ken Howard and inspirational #MatExp leader Leigh Kendall. What a triumph for #HugosLegacy. It will be nice that Alison already knows Ken and Leigh has used the logo that Ken designed for our #MatExp campaign. All the different strands coming together and interweaving; people rather than labels,  just what I love.

But this is about Alison and I was delighted that Alison uses a cricket analogy. This is a lovely combined tribute to her dad and to me, as you will see in her blog. We often have a bit of banter on Twitter about cricket.

So I would like to  take the opportunity to give Alison a little team talk…

You have played a tremendous innings, Alison. And as so often happens in cricket, some of the early overs have been really hard and you have had to stand your ground and dig in. You have watched the ball fly past your stumps, perilously at times, but never quite taking you out. Now, you are looking far more at ease and showing your true class. You are coming up (not immediately!) for your 50 and everyone knows that the going gets easier after that, if you just keep going, don’t get complacent … and look to smash the odd bad ball out of the ground. ;-)

Alison has already written her story in three parts on my blog. Parts one and two described the trauma that led to her illness, and her long-term experience of disjointed care, causing her to fall through the cracks (chasms?) in the system. Part three was triumphant last year when we were both delighted to be listed as HSJ Inspirational Women. This is part four.

Mark my words, there WILL be a part five, and I am so looking forward to publishing it in due course. Alison’s story is very special and I am absolutely chuffed to have played a very small part in it …

Bowled over

When this fourth blog for Whose Shoes? goes live, Gill and I will be up to mischief again as Gill teams up with my Dad as my guests at the first HSJ Patient Leader awards in Birmingham. The down side of course is that I will have to listen to a lot of cricket talk. I was brought up around cricket with abiding memories of Mum trying to get grass stains out of whites, me cutting crusts off endless rounds of salmon paste sandwiches and Dad regularly damaging an appendage or two all in the name of the game. Dad is still involved with his old club in Buckie and coaching primary schools kids at 70 something. Gill too is from a cricketing family with her son being an up and coming cricketing star.

Am stumped to come up with enough cricketing metaphors but suffice to say I am truly bowled over. It is a very special thing to be recognised for my work putting my experiences of using health, social care and housing services to good use. I am hopefully planting seeds in the minds of professionals who will go on to make changes in the way they work, and in patients who might through hearing me realise that a long term health condition can be a start not an end point.

Occasions like these give me a chance to reflect on how far I have come which I can forget to take time to do. Nine months ago I finally felt confident enough to start working for myself. After seventeen years since illness forced me to give up my international relations career which caused a downward spiral into homelessness and hopelessness I finally took the plunge into working for myself. This took a real leap of faith. I was dependent on Benefits and subject to the constant round of form filling and assessments not to mention the relentless barrage of judgement from the likes of the Daily Mail. It is hard to have self-belief after such an extended period of dependency.

Being on Benefits is not easy nor pleasant but it became safe through familiarity. By making the decision to come off Benefits I was making a declaration that I felt I had worth, that I had something that people might consider worth paying for. I had struggled for a long time to see myself as anything other than a bundle of symptoms and problems to be solved so this involved redefining my entire identity. It was a very scary thing yet it was exhilarating and exciting at the same time.

I could not have done it without support from people like my Dad who has always stood by me, Gill and Gill’s Mum whose encouragement of my writing was a real turning point, from Mark Doughty who coached me through a lot of the dark woods in which I often failed to see the trees until I bashed right into them, and from Helen Bevan who saw something in me early on that I just was not ready to see myself. Thanks to all of them and many many more and I am now being paid to do work that I love. I work with Helen’s fantastic team at NHS IQ Horizons Group writing and curating for The Edge online change leadership hub. I am now at the Kings Fund as an Associate contributing to Leadership programmes and other work across the Fund. I get particular pleasure though from working with people at the start of their careers. This September for example will be the second year running I have talked to the new cohort of the NHS Graduate Scheme and I have also had the privilege of working with nursing students at Southampton University.

I thought my diagnosis represented the end of my useful life but in fact in turned out to be the beginning of something more important and more real than what I did before.

We patient leaders or however we choose to define ourselves, are in fact a very useful, very active lot. We turn up over and over again to give all we can with often little return to help make things better for our NHS and other services that we use often across seemingly insurmountable barriers. We can get drained, negated, used, at times abused, misunderstood but also at other times appreciated respected, valued and at times like this even celebrated. We come in all guises, a motley crew if ever there was one, beavering away in whatever roles we have ended up in – as activists, community champions, peer supporters, researchers, quality improvers, critical friends, teachers, trainers, coaches, designers, innovators, representatives – unusual suspects if ever there was such a thing. We even have our first Patient Director in the shape of David Gilbert.

What unites is not the specifics of role but the way we work. The NHS Leadership Model describes a leader thus “the most important element comes from a combination of emotional expressiveness, self-confidence, self-determination and freedom from internal conflict” and is more about how we manage ourselves than manage others.

These are the qualities of a “patient leader” too rather than someone merely called upon to recount their patient story. It is about a mindset, how we collaborate, know how to ask the right questions, and understand when to use our personal experiences and when to leave them at the door. Yes, we might demand that professionals walk in our shoes but we are prepared to walk in theirs too. We have learned to manage our own health conditions, and made the choice to move from self-management to self-leadership then on however we choose to do so, to leading change in the wider system. Combining our leadership qualities and personal insight with professional expertise is not forcing professionals to lose power, it is creating a stronger power base so there is more of it to go round. This is a source of new power that the NHS and social services cannot afford to waste.

I love what I do even though it can frustrate and drain me. For a long time my motivation to push for change was based on a combination of anger and survivor guilt. Over time this has changed and I realised that my work gives as much to me as it does to the people with whom I am working. There is something really special about seeing the spark of ideas light up in people who are hopefully going to go on and use this way of thinking and working in their future careers. I am regularly moved to tears when I see my experiences and how I relate them lead to a lightbulb moment for a student or healthcare professional.

A real milestone this year was being asked to be a keynote speaker on the final day of the NHS Confederation conference.

The response was overwhelming and amazingly I ended up being ranked Top Influencer of the conference with someone called Jeremy Hunt coming in at number two. More important though was the fact that Dad watched it up in Scotland live on the internet and told me it made him emotional. It is not easy for my family to hear the darker side of my story so the fact he felt proud of what I did meant a huge deal to me. Also after my speech a patient approached me who had had a stroke and through his carer told me that what I had said had given him hope for something he could achieve in his own life. These are the things that really matter.

My speech that day was about my journey from disembodied, disempowered patient “voice” to patient “leadership”. How can “patients” – a term I used deliberately for its connotations of passivity – possibly be “leaders”? It depends on how we define Leadership. We can judge it by place in the hierarchy, by salary levels, by the material indicators of “success” but in my view it is not about those things. To return to cricket it brings to mind a quote from former Scotland and Indian cricket player Rahul Dravid (whom my Dad has met in Fochabers he tells me).

“I think we judge talent wrong. What do we see as talent? I think I have made the same mistake myself. We judge talent by people’s ability to strike a cricket ball. The sweetness, the timing. That’s the only thing we see as talent. Things like determination, courage, discipline, temperament, these are also talent.”

These are the very qualities that we celebrate at the HSJ Patient Leader awards.

Posted in Blogs, co-production, communication, compassion, Guest blog, health, housing, leadership, mental health, personalisation, social care, well-being | Tagged , , , , , , , , , , , , , , , , , , , | Leave a comment

What does it take to build a change platform? A year ago I had no idea. #MatExp

What does it take to build a change platform?
If you had asked me this question a year ago, I would probably have said that I had no idea. And yet a year later, it seems that that is what we have done. On Friday we were absolutely delighted when Helen Bevan and team included #MatExp as one of the top change platforms in a global webinar.
MatExp - change platform

I was sitting last night contemplating this. Then serendipity struck when Jodi Brown, who had co-hosted the webinar with Helen, posted this tweet:

Jenny's bottle of matexp wineI think a big part of my philosophy is not to try to ‘bottle’ something that is a bit magic – other than in this wonderful #MatExp bottle distilled by Jenny Clarke. ;-) People want to feel part of growing something themselves rather than just taking on a formula dreamt up by others, however successful it may be. It always felt like a let-down on Blue Peter when they said “Here’s one I made earlier” and all the fun of discovery was removed.

Similarly, whilst it felt exciting to read a tweet the other day saying that our Whose Shoes? workshops should be ‘mandatory training’ for all, this goes directly against what I am desperate to achieve, which is to help people, users and healthcare professionals, devise and own their own solutions, working together as equals. It can never be a top-down approach.

Florence Wilcock wrote:

Florence Wilcock wrote:
“A very small pilot….!”

The #MatExp journey has been and continues to be extraordinary. Starting as a planned ‘very small pilot’, it has combined the energy of vibrant workshops with the speed and connectivity of intensive social media.

I started using the #MatExp hashtag back in about September 2014 and registered it with Symplur as a way of monitoring its reach. I had previously done this with #dementiachallengers, so knew this would be be important.

I am somewhat blown away by the fact that #MatExp now has over 144 million Twitter impressions.

It has created a virtuous circle. People tweet photos of the workshops, make positive comments about the experience and take real action. As other people see this and pick up the energy, they too want to get involved; as more people get involved, the workshops get even better. In the jargon ( I am not a fan of jargon) we ‘pull’ people in rather than telling them what they should do.

Bazaar - Helen BevanSome of the slides that Helen Bevan included really struck a chord with me.
I absolutely love the idea of comparing building a change platform to running a bazaar. You cannot see anyone in charge but no doubt someone somewhere has thought to get it started in the first place … and then perhaps would be in a lot of trouble if they tried to stop it!

A bazaar is such a colourful, vibrant and slightly chaotic image – it describes #MatExp perfectly.

As you may know, I am not one for a lot of rules. So here, in an unusual ‘tip of the hat’ to a popular formula, I decided to write a kind of ‘List of 10 things’ – the first 10 things came into my head rather than anything more scientific. The whole thing has been a fantastic team effort – the ‘core’ team from the project as originally envisaged made so much stronger by all the fabulous people who have stepped forward as leaders as the campaign has progressed. I have missed loads of things out, for which apologies, but there is masses of #MatExp stuff on the internet so it is pretty much all available to someone wanting to do their own research…

TEN (or perhaps a few more) THINGS…

Toolkit pic

  • We produced a toolkit to support the use of the board games – practical help with running future events.

 

  • We ensure that everyone has a voice – all perspectives are equally valued.

  • We were invited to be one of the supported NHS change day campaigns. They came to film us talking about #MatExp and what we are all trying to achieve.
  • We gave the team a few headaches as we wanted to include so many actions. We had a team of people – about 50/50 health care professionals and ‘users’ leading the different actions. These ranged from Skin to Skin and optimal cord clamping at the time of birth, to good practice around communication, supporting mums and families post-natally (including depression) and many other topics.

Click here for the visual story of the Guernsey workshop – including some photos of the beautiful island!

Not sure if that was 10 things. ;-)

We have a lot of fun. Online friendships have become real friendships. Collaboration is strong. We encourage each other – and egg each other on. We are impatient for change.

I am not sure how the whole #Matexp change platform can really be evaluated. I think the NHS London Strategic Clinical Network are evaluating the project that they originally commissioned. I think the NHS Change Day people are evaluating the impact of the change day campaigns but hopefully can include the whole project in some way. We will find out more shortly, I think. I find it impossible to separate out different elements – and I think this is the nature of a change platform. I am really hoping that someone can get their head around the whole totality and evaluate accordingly.

Oh and I think I may have graduated from the School for Health Care Radicals last week, in which case I am very honoured. I didn’t get round to buying my gown and high heel shoes in time and unfortunately missed it when I was away at my first maternity conference. It was a JFDI conference pulled together from nowhere by Jane Pollock, @midwife_jane, a fantastic midwife.

And again some of the Twitter friendships became real life friendships.

Including me FINALLY meeting Sheena Byrom! :)

https://twitter.com/DeirdreMunro/status/616948403377991685

I hope you are inspired to join #MatExp – or to build your own change platform. Post a comment to encourage us – and there are plenty of people here ready to encourage you too!

Posted in Blogs, co-production, communication, community engagement, health, maternity, personalisation, well-being | Tagged , , , , , , , , , , , , , | 5 Comments

Do we really listen to children and young people in health care?

I love it when I find the right partners. We see the opportunity to do something imaginative together and we just get on and do it. ‘JFDI’ It is one of the biggest advantages of being a small organisation.

kath evans Capture

Kath Evans, Patient Experience Lead, NHS England

And so it was when Kath Evans, whom I nickname ‘can-do Kath’, invited me along to a focus group in London as part of a project to develop materials to run training courses to improve communication between healthcare professionals, children and young people and their parents. The focus group was great and it was really helpful to hear first-hand what the key issues were.

I found it absolutely fascinating. As a parent, I could identify with the various issues. Children growing up, wanting to be independent (or not!), anxious parents used to being ‘in control’ but gradually handing over the reins, children with different personalities, levels of understanding, confidence…

And health care professionals who may or may not know much about communicating well with children, especially if they are not paediatric specialists. Getting it right – for every child and family, consistently – is a huge challenge but so, so important.

It turned out that the project was sponsored by Great Ormond Street hospital and the London Local Education and Training board (LETB). The short version of the story is that they had the source material and I had the Whose Shoes? toolkit to bring the conversations alive; we put them together to meet the identified training need in an innovative and engaging way.

Kate Martin, from Common Room, who is leading the training programme was luckily able to come along to the Whose Shoes?  ‘Train the facilitator’ session we held in London, as part of the maternity experience project. This meant that she was able to experience the tool in action and this helped to find how it would best fit with the children’s project. From a multitude of crowd-sourced scenarios, the final ones were chosen and we were ready to go.

CYP Img_4680AThree pilot sessions were held in quick succession. I was lucky enough to be able to go along to the final one. I felt a bit sorry for Kate as all the project sponsors turned up to the same event, so it must have been slightly daunting.

Participants had all volunteered to come (no-one press-ganged!): a fantastic mix of health care professionals from hospitals and organisations right across London.

It was clear that this was a highly skilled audience. These people were passionate and knew the ins and outs of communicating with children and young people. They brought examples from their own practice that were extremely tricky and testing.

We used Whose Shoes? in the morning session to get people thinking creatively and opening their minds to imaginative solutions. The session was buzzing – it is always good when people don’t want to stop. I was impressed by the sharing of challenges and solutions.

In the afternoon the learning from the earlier discussions was applied to specific scenarios and it was wonderful to see some extremely practical ideas being formulated. I was ‘’teamed’ with a dietician and a diabetes specialist and we explored ways to get some of the most ‘resistant’ young people to adopt heathier choices.

The project is proving extremely popular and with great feedback.

This is the kind of project I love: values-driven approach and the opportunity for real sharing between hospitals. Inter-professional learning. Breaking down the silos.

If you are interested in taking part, there are further workshops coming up in July and September. Contact info@mefirst.org.uk.

This slideshow requires JavaScript.

Postscript. In putting together this blog, I have just spotted the most amazing co-incidence. Ali Gardner was one of my very first customers and a fab Whose Shoes? champion – we have done a lot of really creative stuff together. And here she is praising Kate Martin, her ex-student.

Kate – a trip down memory lane. See if you can spot Ali and me :)

Posted in children and young people, co-production, communication, community engagement, health, in my shoes, personalisation, well-being | Tagged , , , , , , , , , , , , , , , , | 1 Comment

Dealing *urgently* with urgent care for older people…

I have always loved writing stories and making connections. When I was about six or seven, I used to nag people to give me a set of random words and then enjoyed weaving them all together in one story.

Life beltI had forgotten all about this until Mum reminded me when I saw her at the weekend and was telling her about my talk at the NHS Confederation Annual Conference (#Confed2015) last week in Liverpool and some thoughts I have about taking it forward. Once again it is all about bringing different people and threads together and making a coherent whole.

I had a great time at the conference and in Liverpool generally. I put together a visual story on Steller which has been fun: Gill’s alternative take on #Confed2015.

Me - speaker badgeI was honoured to be asked to be a speaker as part of the “Improving urgent care for older people: sharing the learning” session chaired by Dr Mark Newbold, who is chairing the Commission on Improving Urgent Care for Older People. The Commission aims to “put forward patient-centred, evidence based solutions that will be widely supported and practically applied in local health and care settings.”

I was pleased to be invited as I had enjoyed taking part on the Guardian panel recently on a related topic, the highlights of which were published yesterday.

Mark talked about the challenges, including sharing this great new animation film which explains the situation well.

Improving urgent care for OPNext up was Sharn Elton,  Director of Operations NHS East and North Hertfordshire Clinical Commissioning Group, sharing good practice as one of the ‘Five Year, Forward Vision’ Vanguard sites. It was good to hear how services can be more integrated with a bit of multi-disciplinary imagination.

Then it was over to me to give a Whose Shoes?
multi perspective type take on things.

To be honest, it was not the easiest audience. Many of them looked happy tapping into their laptops about systems and processes but singularly uncomfortable to be confronted by The Idea That There Are Real People Involved (a.k.a. patients). People who have lives to lead and who might not want to be seen as ‘just’ a medical condition or a set of services.

I started with a poem to test the water.

PoemThe water was deep.
There seemed to be some people who preferred the shallow end …

I thought I might need the life-belt after all. At least one person liked it…

I was buoyed (excuse the pun) by the lovely messages I had received from my Twitter pals who ‘get’ what I am trying to achieve.

Anyway, I’ll tell you a bit more about the actual session at the end but I think the connections  and possibilities that are growing from it are exciting.

So here are the different threads going through my mind that I am hoping to link:

      • Dr Mark Newbold is chairing this commission and seems to like my Whose Shoes? way of linking people and bringing real (often very challenging) voices into policy development.
      • My mum is 93, fiercely independent but with mobility problems and now living in Assisted Living accommodation, where she has friends with a similar range of medical conditions but who want to enjoy life and stay out of hospital ! They will be keen to have their say!
      • Mum writes her own blog, including this powerful ‘Sunk without trace’ blog she wrote especially for this conference and which has had loads of ‘hits’ and some nice comments. Mum has ‘no idea’ why her writing strikes such a chord with so many people.

    • I am part of a very strong network of people who are either ‘patients’, carers, or ex-carers, many caring for elderly parents, often living with dementia. These are special people who have not only dealt with their personal challenges but done something about it; now recognised as national speakers and innovators.

  • Coincidentally, when I first developed the electronic version of Whose Shoes?, I did it in collaboration with older people including residents of Extra Care Charitable Trust.
    It was part of an SBRI competition around nutrition and mobility, which is central to keeping people out of hospital! I therefore have Whose Shoes? scenarios, co-produced with older people, to start conversations around these topics.

I am hoping that, as a group of critical friends, including some life-hungry 90 year olds, we can help Mark and the rest of the Commission make progress.

So, what did I talk about?

This gives you a flavour. A ‘wee taste’ as my Mum would say.

I had crowd-sourced and talked about the things that people thought were important.

Bombarded with tweetsI talked about prevention…

Mum's bathroom - slide
I brought in some personal stories – simple things to make people think.

When Mum moved into Assisted Living last year, a friend of mine who is an O.T. did an assessment and we bought all the equipment and arranged the support Mum needed. The wait for a social care assessment was six months. If we had waited six months, I would guarantee that Mum would have had a fall and ended up in A&E. The assessment took about 45 minutes. Where is the joined-up thinking?

I talked about my Dad who had, in total, eight heart attacks and little things that really helped him (and us, as a family).

SilosI talked about the need for people to stop working in silos.

I talked about one of my personal bug-bears “Continuing (NOT) Health Care“.  A bit like a red rag to a bull really.

I graffiti-ed up an image from the animated film.

health and care bike

And I talked, of course, about the Healthy Living Club in Lambeth.

Regular readers will know how much I love them – they cut through all the ‘stuff’ and just have fun WITH people living with dementia. I pointed out that this is ‘community’ at its best – if someone is missing one week, people will enquire and make sure they are OK.

Having fun prevents social isolation; the exercises keep people mobile; the music enables them to join in and smile. And yet they never have any MONEY!!

My friend from Bristol University days - Steve Cordery - who has kindly been helping raise money for the Healthy Living Club.

My friend from Bristol University days – Steve Cordery – who has kindly been helping raise money for the Healthy Living Club.

I behaved myself and refrained from asking how much it was costing for some of the apparent ‘non-swimmers’ to attend the conference.

But I did suggest that commissioners might be a bit more imaginative in terms of seeking out highly cost-effective, imaginative ‘interventions’ and ‘therapies’ to support (well you have to talk the right language!).

Food for thought.

HLCLC foodAnd I showed a photo of the club members having a nutritious ‘dementia-friendly’ meal – and pointed out that the club had no money to keep the meals going either.

There have been some great blogs on the subject of ‘integration’ since the Confederation conference by some of my favourite commentators…

It is hard to know what really ‘influences’ people but it seems there was at least a passing moment…

“We need to get over ourselves”. Well said, Andrea Sutcliffe.

Now we need the action.

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#MatExp – Spreading The Word

Gill Phillips - Whose Shoes?:

Fantastic new blog by Helen Calvert @heartmummy rounding up the first week of our #MatExp ‘month of action’ for #FlamingJune. SO proud of our JFDI Mums who are proving you really DON”T need permission.

Just dive in, lead change, and make things happen! 💥

Originally posted on Heart Mummy Musings:

We’re one week in to the #MatExp #FlamingJune Month of Action and it has been a BUSY week!  So much activity on Twitter and on Facebook – and of course, the brand new website.  In amongst all of the excitement, I have identified four ACTIONS that I will focus on this month for the campaign.  The first of these is to SPREAD THE WORD.

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There are few things that excite me more than bringing people together, facilitating conversations, building up networks and getting people to communicate.  I spent a good chunk of my wedding dinner gleefully watching how well my table plan was working (hey, I never said I was normal!).  #MatExp has been fantastic for this.  The whole premise of the campaign is bringing all kinds of people together to have the important conversations, to find solutions and improve maternity experience.  As wonderful as it is to have…

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In the shoes of … | Gill’s Mum: “Sunk without trace”

Mum rewriting blogWhen I called in to see Mum, I found her busy; busy trying to sort out her handwritten blog. Cutting and pasting it the old way – by rewriting bits.

It is lovely to see Mum starting to write regularly again and that in itself is significant. Last year, when she had had her accident and was living for several months with me, she had a lot more time on her hands but I could never really persuade her to do very much writing or drawing. She just immersed herself in her books. She was worried about the future – we all were.

Now she is happy in her new Assisted Living accommodation and making more friends and seeing more people than she has done for a very long time, she has the sparkle back in her eye. And this goes with taking a greater interest in life in general and pursuing her various interests and hobbies. Well there’s a surprise! … So look out for some more of her pithy blogs. ;-)

NHS Confed logoSeeing the whole person and how things need to join up and offer quality of life rather than just medical fixing, is a key theme of my talk tomorrow on the opening day of the NHS National Confederation Annual Conference, where I am very honoured to be speaking.

So what was Mum writing about so furiously (in more senses than one!)?

“You know that talk you said you’re giving in Liverpool [on urgent care for older people]. Well I have some thoughts of my own…” 

I looked at the opening title of Mum’s blog: “Sunk without trace”.  My heart sank too – I wondered what an earth she had been writing about. The poignancy of the war-time analogy and, as I read it, the fact that that generation of stoical wartime survivors feel neglected made me feel very uncomfortable – and I hope it does you too.

So I invite you to hear from than a 93-year-old, desperately trying to enjoy life and stay HERE (as mum wryly calls her new living situation) and OUT of hospital…

Sunk without trace

NHS - over 70sA front page article in the paper this week asked if there will be a second-class NHS for over-70s, leading to many avoidable deaths.

This is not a new question of course, but it seems that funding is being cut again. Many old people living alone and dependent on carers and nurses coming in every day, or maybe just some days, rely on them for some contact with the outside world and life. Again it all comes down to money and funds are needed.

I am very lucky and living now in an Assisted Living Home (NOT a Care Home). I came in here after an accident made it impossible for me to go on living on my own in my own house. But it is not cheap and probably beyond the means of a lot of people.

This is a lovely place where the residents are interesting to talk to and are good at organising their own amusements such as Scrabble, a quiz, a film night and the occasional tea party. All this keeps the mind active.

Carers [Mum means paid carers] cannot do this of course. They hardly have time to talk at all. Just in and out. There is also less and less contact with the Doctor these days as things have been palmed off on to the practice nurse or someone else. These people are always in a hurry and watching their computer screens.

Hospitals often send people home too soon and if they are kept in they don’t always get looked after as they should be. Then inevitably they come back in, creating a vicious circle.

This latest cutback makes one wonder if anyone really cares about the over-70s – who will obviously be increasing in numbers – or if they think it is an easy way of disposing of them without argument.

Please post any comments – it would be great if you can help Mum understand the power of blogging and that these posts do not just disappear into the ether… ;-)

 

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The #MatExp month of ACTION begins today. Why women everywhere need the Maternity Review Team to engage!

NHS Confed logoJune is not going to be dull…! For me personally, this is a big week – I am looking forward to speaking at the NHS Confederation Annual Conference on Wednesday. The session I am involved in, chaired by Dr. Mark Newbold, is about urgent care of older people. The emphasis of my contribution is around prevention, holistic approaches and joined-up systems, ensuring that life is not over-medicalised – the simple things that make life worth living.

Mum, known on Twitter as @Gills_Mum, is extremely interested in my talk and threatening to write a blog of her own…

Preparing my presentation brings home yet again the parallels and key themes across all areas of my work. Hardly surprisingly really as we are all people; aspirations, hopes and fears and the desire to have control over our own lives do not suddenly change just because we get older.

FlamingJuneToday starts the month with a bang.

Our #MatExp campaign, to improve the maternity experience of women everywhere, goes up a gear.

For anyone who has been twiddling their thumbs and wondering what to do with themselves since the end of the #MatExp alphabet (yes, we know who you are!), you will be delighted to know that June is a month of action!


#MatExp #FlamingJune – we are just waiting for the weather to catch up … although perhaps it is just as well it is a bit cool outside or the energy burning in this remarkable grassroots campaign might just start some forest fires!

Sheena Byrom is an extraordinary woman. As her action for June, she is posting blogs from individuals who have information to offer to the new team set up to conduct a national review of maternity services in England, led by Baroness Julia Cumberlege. We all feel passionately that this new review team needs to engage with the action-focused, inclusive work of what has now become an unstoppable social movement for positive change.

And so it is a huge honour that Sheena invited Florence Wilcock and me, as the initiators of the #MatExp campaign, to write the opening blog and tell everyone what has been happening and why is it so important for these links to be made.

Sheena is publishing our blog today on her site. But for ease you can also read it below. We are all working together in a very strong collaboration and taking the view that the more different channels we can use to spread the word and involve more and more people, the better!

OUR GUEST BLOG FOR SHEENA BYROM IS REPRODUCED BELOW…

We would like to kick off Sheena’s June blogging series with a strong call for the Maternity Review Team to engage with our fabulous #MatExp grassroots community. We need to build on all the amazing work that has been happening over recent months through this passionate, inclusive group.

So what is #MatExp and how did it come about?   

A lot has been written about this already – for example, Florence’s ‘in my shoes blog’.

Florence and Gill made this short video when, due to the phenomenal grassroots energy it had inspired, #MatExp was included as a major campaign in NHS Change Day, 2015.

Users came forward not only to join the various actions but to initiate and lead them themselves. You can check out the actions here but they cover everything from appropriate language, postnatal support, best practice and experiential learning – including many male obstetricians spending time in the lithotomy position!

Florence is a passionate obstetrician and clinical leader, who was asked by the London Strategic Clinical Network to find ways to improve maternity experience in response to a poor CQC report identifying that six of the seven worst trusts in the country for maternity experience were in London. Florence approached Gill, the creator of Whose Shoes?,  to co-produce some challenging Whose Shoes? maternity scenarios and run a series of workshops, getting users and professionals and all other interested parties – NCT, MSLCs, everyone! – to work together as equals and come up with imaginative solutions.

IMG_8292With support from NHS England, five very successful and fully subscribed workshops were held across London.

Queen’s Hospital session in action

The combination of the face-to-face workshops and the social media network have been extraordinary, with lots of overlaps. For example Helen Calvert and Leigh Kendall, two of the mums now helping lead the campaign, came down to London to join the workshops and they also contributed to the #MatExp NHS 6Cs webinar.

Booklet - MatExp WSThe Whose Shoes? workshops, supported by a full leadership and facilitation toolkit kit developed in partnership with the London SCN and NHS, are now planned at other London hospitals and spreading to other parts of the UK, including a session in Guernsey at the end of June.

There is a lot of cross-fertilisation of ideas between localities and between hospitals, with a strong emphasis on building relationships and collaborations. Each workshop culminates in pledges and a local action plan, formulated by the people at the workshop and encapsulated in a powerful graphic record.

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Graphic record from our #MatExp Whose Shoes? workshop, held at Kingston Hospital. New Possibilities are the graphic artists.

Inevitably the themes are similar between the different sessions but with a strong local emphasis and most importantly local ownership, energy and leadership.

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It would be easy for the NHS Change Day campaigns to lose momentum after the big day itself, (11 March). #MatExp has done the opposite, continuing to build and bring in new people and actions. #MatExp #now has 110 million Twitter impressions. We have just finished the ‘#MatExp daily alphabet’, a brilliantly simple idea to get people posting each day key issues related to the relevant letter of the alphabet.

This has directly led into the month of action starting today, 1 June!

Helen Calvert set up and ran a survey of health care professionals. She had 150 responses within about 10 days and analysed and reported the results – an extraordinary contribution.

We have a vibrant Facebook group (please apply to join – initiated by fab Helen Calvert @heartmummy) and the brand new website (LAUNCHED TODAY! – huge thanks in particular to Leigh Kendall @leighakendall) set up by the #MatExp team of mums who are incredibly focused, working long hours – all as volunteers. We are all absolutely determined to keep working together to improve maternity experience for women everywhere.

Gill Phillips and Florence Wilcock

There will be LOADS of ideas to help you…
So please get involved.

Posted in community engagement, compassion, dementia, Gill's Mum, health, in my shoes, personalisation, social care, well-being | Tagged , , , , , , , , , | Leave a comment

In the shoes of Rachel Dutta Choudhury… | Raising awareness of dementia at Midland Heart

And so another ‘Dementia Awareness Week’ comes and goes. It is hard to believe that it is three years since I first started to collect and publish ‘in my shoes’ blogs as part of Dementia Awareness Week, 2012.

But to emphasise the message that awareness is something that needs to go on all year round and not just for seven days, I like to post blogs after the ‘official’ week has finished.

Midland Heart IMG_8387I was invited to run some workshops for staff at Midland Heart at their impressive HQ in Birmingham. I was delighted that Ken Howard, my friend and colleague who lives with younger onset dementia and Anna Geyer, my fab graphic facilitator pal, were able to join me. I am always particularly pleased when we get an opportunity to engage with people who don’t always get the chance to think about dementia, and this was a particularly receptive and welcoming group of people.

Rachel Choudhury, part of Midland Heart’s Dementia Strategy Group and Senior Bid Writer, tells the story…

When we first formed the Dementia Strategy group at Midland Heart in 2012, I don’t think any of us knew quite where it would take us. We knew how important it was that we did something, we’d all heard about the ageing population and how people were living longer, and knew that this would inevitably impact on us as a business which, at its core, is about supporting people from all walks of life and at different times within their lives.

For my part, I became interested in dementia several years ago when my grandmother, although never formally diagnosed with dementia, began to forget things. From being the family’s matriarch she became reticent and unsure of what was happening around her, I felt helpless and unsure what to do for the best. Being part of the dementia strategy group has enabled me to support us as an organisation and as individuals to work towards increasing understanding of what there is that we can do to help people live well.

For the past 3 years we’ve used Dementia Awareness Week as a way to raise awareness with our staff, customers and the communities we work in. This year, we wanted to go a step further and not just ask people to attend an event, we wanted people to get involved, and to have meaningful conversations about dementia and also to challenge preconceptions. A few months ago, our operations manager for mental health, Rosemary Doherty, attended a conference and came back telling us about Gill and Ken and how inspiring they had been. We knew that we wanted to work with Gill and Ken, but how?

That’s when we found out about Whose Shoes?  It just fitted with everything we’d been trying to do through our Dementia Strategy and Alliance Action Plan. At previous events,  we knew that the same few faces would turn up, we wanted this year to be different, so we decided to be just a little bit disruptive and not hide the events away in corporate meeting rooms but to hold them out on the open plan office floors. That way we could benefit not only those taking part but also get the message across to the people who carried on working around us.

We’d arranged the Whose Shoes?  sessions for the Tuesday of Dementia Awareness week and planned to hold one session in the morning and one in the afternoon on different floors of our head office in Birmingham. Gill, Ken and Anna from New Possibilities (who was to create some incredible graphic recordings which we could keep after the event) arrived and we set up the space where the first session would take place.

We waited anxiously hoping that people would get involved (I had already had considerable interest from staff so in my sensible head I knew that people were coming but another part of me was worried in case for some reason they didn’t!).

I needn’t have worried  – staff from across our departments, from our housing management team to our legal department, arrived ready and willing to take part.

The next hour flew by,  filled with anecdotes and reflections from everyone involved. Ken spoke to us about his experience and was happy to answer our questions.

By the time of the second session, word had got around the building of how fantastic the first had been!
We duly dragged in extra chairs to accommodate our swelled numbers and began the second session.


As someone lucky enough to have taken part in both sessions it was really interesting to see the different thoughts and emotions which the sessions brought out for people.

No two discussions were the same but for me there was one overriding message which carried across the two:

If we treat each other as individuals and with the care and understanding that we would a friend or family member, we really can’t go far wrong.

Rachel Choudhury & colleagues - IMG_8444

Posted in Blogs, community engagement, compassion, dementia, education, Guest blog, health, housing, mental health, personalisation, well-being | Tagged , , , , , , , , , , , , , , , , , , | 2 Comments

In the shoes of Mel Pickup… | CEO, Warrington and Halton NHS Foundation Trust

In May 2012, I thought it would be a good idea to collect and publish some ‘in my shoes’ guest blogs for Dementia Awareness Week. I started it with my own story and then collected all sorts of stories from other people. Like a lot of the stuff I do, I had no idea what I was starting: it ran every day for weeks! There have now been about 150 guest blogs on all sorts of topics, over 100 specific to sharing ideas, good practice or challenges around dementia care and support. The thing they have in common is that they are written by passionate people who have something important to share.

And now it is Dementia Awareness week, 2015. Once again dementia is particularly ‘topical’ – last week I was honoured to be asked to take part in a lively discussion session hosted by the Guardian about ‘integration’. In my days as a family carer for my Mum living with dementia, it was all too easy to fall down the cracks!

As someone who likes things to happen pretty fast, rather than debates that go round endlessly in circles, I sometimes ask myself how much is really changing as these various awareness weeks, conferences and discussion panels come and go.

And then I hear stories that make me feel optimistic, and these are the ones I try to share.

Last month I was a speaker at the ‘Dementia: Quality of Care’ conference’ in Manchester and it was a really interesting line up: a mix of people I know well and people who were new to me. My session was in the afternoon but two stories jumped out at me from the morning presentations.

The first was an update from my friend Suzy Webster, who cares for her Mum living with dementia in a three-generation family household. Suzy is a regular speaker at dementia conferences and one of my absolute favourites: always nervous beforehand wondering exactly what she will say and then always ‘spot on’ because she has a compelling story which she tells from the heart.

Suzy has been a regular contributor to my blog series and also that of her great friend, fellow dementia challenger Sarah Reed. Suzy spoke about her Mum’s impending cataract operation and how she wanted to be there to support her but at the time it was looking as though she would be refused.

Thanks to some extra ‘encouragement’ from people on Twitter, her health board agreed and it makes a very uplifting story, with lots of important learning, told here on Sarah Reed’s fab ‘Age Page’.

The second story is the one which I am delighted to publish here to coincide with the launch today of a wonderful new dementia facility in Warrington: the Forget Me Not unit. I heard about this when Mel Pickup, CEO of Warrington and Halton NHS Foundation Trust, who was also a speaker at the event, gave a wonderful content-rich presentation.

 

I was particularly taken with the story of Twiddle Muffs (read on!) – such a simple and engaging idea and it looks as though my Mum and her some of her W.I. friends will soon be knitting a few!

 So here is Mel’s story.
I hope you enjoy it as much as I did.
__________________________________________

The Rise of the humble Twiddle Muff

Mel Pickup

Mel Pickup

I’ve observed that, a lot of people who become interested in dementia care, do so because they have had a distinctly personal experience of may be a friend, a loved one, partner, parent, someone close to them having been diagnosed and suffering from the effects of dementia. Often it seems that the personal anguish of seeing that ‘significant other’ change over time, as they succumb to the disease and ultimately become lost to them motivates people to do something, indeed, anything. If they can’t halt the disease, or reverse its effects then they look to do something in the present and for the future, something just to make the lot of that person and thousands like them, just a little bit better.

I have to be honest and say that in the beginning that’s not how it was for me, although ironically it would become so a short time later, when my partner’s mum was diagnosed with Alzheimer’s disease. So where did it all begin? Well it all began with one of these…

Picture2This is what we call a Twiddle Muff. There are as many varieties of this as you can care to imagine, similar but different, knitted tubes that become a haven for restless hands, adorned with lots of things to, well, twiddle with. Velcro, baubles, bells beads and buttons, ribbons, zips, different textures, colours all designed to amuse, give focus, provide comfort to a mind that probably would rather be anywhere other than where it actually is.

My Director of Nursing, Karen Dawber brought a Twiddle Muff into my office about two years ago, explaining its role in helping to calm those elderly patients on some of our acute medical and surgical wards who were suffering from delirium. So the age of the Twiddle Muff began. Karen had come across a picture of one when she was searching the internet for jigsaws for our elderly patients. The trouble was to buy them commercially was prohibitively expensive so Karen engaged the services of her mother, an avid and adept knitter who not only was able from just looking at the picture knit one in no time at all, she also wrote a pattern for others to follow.

Knitters everywhere rose to the challenge, a veritable army of knitting nanas, volunteers, our public governors, league of friends all joined the cause. Some knitters weren’t keen on putting on the twiddly bits, so they just knitted, conversely those who weren’t that good at knitting but wanted to help  did so further down the production process attaching the bells, ribbons, etc. The knitters were busy doing what they did best and the twiddlers, well, you get the idea.

So all this  got us thinking. We are an acute hospital, a standard District General Hospital that does, what you might expect a standard District General Hospital to do. We provide secondary care to our population of about 320,000 and like most similar organisations, the majority of our patients are elderly. Increasingly a number of these patients are suffering from some form of cognitive impairment. We were dutifully conducting our Dementia assessments to identify those patients with cognitive problems, and those that were in need were referred to specialist Dementia services provided by our local Mental Health provider, but that didn’t hep in addressing the immediate needs of those patients. They still needed to be in our care for inpatient treatment; maybe they had fallen and had a fractured hip that needed surgery and then rehabilitation to help them walk again, maybe they were suffering from an exacerbation of a long term medical condition, often more than one. So how were we doing as an organisation in catering for not just the physical needs of these patients, not just in providing them with the right treatment to address their acute problems but when we found that they also had cognitive problems, disorientation, loss of memory, confusion, anxiety, what did we do to address these specific needs?

Our staff are caring and compassionate; they always do the best they can but a general medical or surgical ward is a busy and frenetic environment. It is fast paced with a quick turnover of patients and is about as far from conducive to meeting the needs of vulnerable, elderly patients suffering amongst other things, dementia than its possible to be. An unfamiliar, somewhat chaotic and rather unwelcoming environment for those whose cognitive functioning is impaired and one which leaves them wondering why they are there, and not in the familiar surroundings of their own home. We were doing ok, but OK just wasn’t good enough.

Enter Stage left ‘Opportunity’  in the shape of the  Department of Health  Dementia Environment Fund. An amount of capital monies, ring fenced nationally to be bid for by organisations who wished to improve their care environments for patients with dementia. Perfect.

The Twiddle Muff had created a groundswell of interest across the organisation and staff in wards and departments were undertaking their dementia awareness training, conducting screening assessments and trying to go the extra mile within the limitations  of an imperfect environment to better meet the needs of dementia patients.

One nurse’s husband who was a carpenter made an activity board and box and a calendar for the orthopaedic ward where many of their patients were elderly.

Wouldn’t it be great we thought if we were able to have a special, purposely configured ward for our most vulnerable patients, designed and decorated entirely with the purpose of making them more relaxed, less scared, anxious; one where relatives could visit, social activities could be undertaken, where those who were disorientated would have less chance  of getting lost as there would be helpful, bold and easy to understand signage, a bright, colourful unit de-cluttered and de-hospitalised. An oasis of calm in an otherwise busy, busy hospital.

Led by one of our Assistant General Managers in Care of the Elderly, Lisa Hulme and with estates Lead Lee Bushell, we constructed a compelling bid that secured almost £1m to create our Forget Me Not Unit and make our aspirations about delivering Excellent Dementia care a reality.

Checkout some of our before and after photos… 

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Giving our dementia patients and their carers the best possible experience whilst they are in our hospitals has been enhanced immeasurably by our creation of the Forget Me Not Unit but its not just about  the new environment, great though it is. Its a wholesale change in the way care is delivered there and socialising and activities play a large part.

Whether its a string quartet, a ukulele band, a rock choir, or our activities co-ordinator prompting discussions using the memory ball or getting patients to draw and  paint. Even better when the weather allows perhaps sitting in the beautiful garden or maybe even watering the plants.

Picture13 Picture12Hospitals can be daunting, impersonal and unwelcoming places, scary even. Thanks to the humble twiddle muff, where the story began, the desire of our staff, the passion and imagination of our bid team, the support of our Board (all trained Dementia Friends by the way)  the vision of our Clinical Lead Dr Graham Barton  and the continued  commitment of our dedicated clinical team on the FGN Unit, Warrington and Halton Hospitals starts this weeks Dementia Awareness week with the official opening of the Forget Me Not Unit.

We are delighted to welcome Actress Sally Lindsey to mark this fantastic milestone in our Dementia Journey and one year on celebrate with partners, friends and patients and their families who helped make it happen.

What are you doing for Dementia Awareness week?

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