About Roz Davies

Exploring the combined potential of digital and citizenship to improve well-being. Managing Director of We Love Life and Recovery Enterprises. HSJ Patient Leader 2015. MBA.

Hope, Peer Support and Diabetes Self Management!


This post is a big THANK YOU to my peers for the hope and support they give me. In this case I mean other people I have connected with online and offline who live with type 1 diabetes. In particular David Craggs, Anne Cooper, Laura Cleverly, Andy Broomhead and the wonderful people I sat on a table with at the Sheffield Diabetes UK Engagement Event including Carol, Emma, Abby, Hazel and Tony.

The event which was organised by Andy and his warrior team of volunteers was a great achievement. A quite diverse range of 80 people living with the different types of diabetes and a panel of clinical leads (including a specialist consultant, gp, ccg lead, diabetes nurse, podiatrist and dietician) connected, shared  and debated on the challenges of supporting people to live as well as possible with diabetes.

Topics discussed included footcare, education, cures, technology, hypos and the media. The conversations highlighted to me two key undervalued aspects of self management; hope and peer support!

This was particularly highlighted by the response promoted by a question from a person who has a Charcot foot about what exercise she can do. The podiatrist clinical response was a blanket, blunt; ‘no exercise at all’. My first thought was this was counter to all other recommendations around exercise  and diabetes. My second was surely there exists a way to exercise which doesn’t require pressure or movement of the foot. A young man in the audience piped up with the suggestion of Chairobics and the GP on the panel Dr Jez McCole followed up with some suggestions.

I asked Twitter and it didn’t take long before the the very well researched and active @betabetic responded with how she found ways around broken legs and arms to continuing exercise. I later asked; ‘Does there need to be a choice made between protecting the foot or the heart and head?’ Dr Jez McCole replied ‘oh the head and heart 1st, they control and power the rest! Care with those feet though – variety in exercise’.

The podiatrist was forgetting the whole person, she was uncompromising in her response and I wonder whether she also accidentally crushed the hope of the woman who asked the question. Hope to me is one of the keys to self management. I know that my hope is that if I self-manage my type 1 diabetes well I will reduce the risks of complications and I will have a healthier and happier life (both of these qualities are important to me). Don’t take my word for it, there is even a positive pyschology theory of hope!

I think this also highlighted the power of peer support as a key element of our self management toolkit complimentary to clinical support. In this case they provided creative solutions which the clinician had not thought of and I think empathy and support which can only be given by people who are in a similar boat. Again don’t take my word for it – there is bags of evidence around the idea of peer support as part of self-management. See below for just some examples!

I also had some personal experience of benefiting from peer support during the event when I met a wonderful woman full of vitality who had lived with type 1 diabetes for 64 years. Most of the literature and publicity around diabetes is very negative and the possible outcomes for people living with type 1 diabetes can be frightening. It really does require resilience, endurance and courage to remain positive and motivated to continue to self-manage the condition. So for me, meeting someone who has succeeded in that goal has given me hope and motivation that no clinician could ever provide. I think this relates to the undervalued (in healthcare) theory of self-efficacy – seeing someone who you can identify with succeed can give you more of a sense of control over events in your life.

I also got some great practical tips in using the freestyle libre from two young women who I believe probably know this particular piece of technology better than every single healthcare professional in Sheffield!

So please clinicians, take care to treat the head and heart whilst also focusing on your speciality, hope is a fragile but very important part of our self-management.

Commissioners, innovators, leaders (patients and system) ask yourself the question, how are we facilitating peer support as a key element of building self management toolkits? This could range from sharing information about online communities, creating the conditions where patients talk to each other in the waiting rooms all the way through to developing more formal peer support programmes.

A HANDFUL OF DIABETES RELATED PEER SUPPORT EVIDENCE AND APPROACHES (there are many more – please feel free to add to the list)
Heisler, M. 2009 Different models to mobilize peer support to improve diabetes self-management and clinical outcomes: evidence, logistics, evaluation considerations and needs for future research. Oxford University Press

Fisher, E.B. 2012 Peer support for self-management of diabetes improved outcomes in international settings. Health Affairs

Mose, J. 2013 The Case for Peer Support in Diabetes Self-Management. National Peer Support Collaborative Learning Network

Diabetes UK Peer Support 

Diabetes Online Communities

Using social networks to help patients self-care



10 Ways to Improve Well-being for People Living with Diabetes:

I have drawn on my own life experience of living with diabetes, being a Foundation Trust Patient Governor and my working life in citizenship and digital health to identify 10 ways we could improve how we create the conditions for people with diabetes to gain the confidence, skills, knowledge and connections to better self manage and live well. 

1. Provide accessible information directly to people with diabeties not copied in, not jargon and in context.

The letter in the picture below made me cry when I received it. I was copied into the letter about me addressed directly to the GP. There was a set of results with no information about what they meant or whether they were in the normal range – I checked and some of them were not. It was also the first I knew that I had non background diabetes retinopathy and maculopathy.    IMG_26782. Understand each person as a whole person not simply a condition, a ‘diabetic’, as @anniecoops says in her excellent blog post #labelsareforjamjars  (there are lots of other insightful posts from Anne on her blog ‘The thoughts of a nurse with type 1 diabetes’)

3. Be purposeful and thoughtful with language and narrative. It does matter. The deficit model and language (and intent) that puts systems before people can impact on self esteem, confidence and engagement and subsequently health outcomes. The phrase often used which makes me flinch is ‘the burden of diabetes on the NHS’. 


4. Provide accessible education for all. This means lifting barriers such as language, place, time, using digital and offline and working with people who live with diabetes to champion and deliver! Being diagnosed with diabetes and just left to get on with it is like being given the keys to a car and told to drive it with no previous experience, handbook or lessons.

5. Do not promote self management and ’empowerment’ then have a standard policy of locking away insulin when a person with diabetes becomes an inpatient for whatever reason.


6. Understand the emotional and mental health aspect of living with diabetes. It has a huge impact on the ability to self manage and live well and is largely ignored. In 18 years I have never been asked about or helped with this part of my condition. This book written by @drjennash on ‘Diabetes and Well-being’ should be handed out as part of the diabetes induction.

7. Unleash the power of offline and online peer support and community in living with this complex 24 hours a day condition. Check out tweetchat #ourd Tuesday’s 8pm!

8.  Work together with people and organisations to understand and tackle the social and wider determinants of wellbeing, look beyond the medical model of health.


9. Kindness, compassion, empathy goes a long way. See this super Brene Brown RSA clip on Empathy

10. Please engage us in all our diverse forms at every level, move from paternalism to coproduction in individual consultations, service and product development, commissioning and strategy. To find out more about what this means watch ‘no more throw away people based on @EdgarCahn classic book of the same title and read this fabulous coproduction article by @allyc375

Courage, Story-telling and Community!


I have read and listened to four health-related stories this week, all very different contexts but with one powerful connection: courage. The stars of the stories each show incredible courage in both their responses to the cards they have been dealt and also in sharing their stories with us.

Stories inspire us, give us hope, give us perspective and insight and are a gift to be respected and appreciated.

The first story was shared in a blog post written by Anne Cooper (@anniecoops), who always produces thoughtful emotionally intelligent pieces, often breaking open subjects that need a good airing and this was certainly one of them. Anne wrote about ‘the Big M’, the Menopause. Although it affects half the population, Anne states: ‘it’s one of those taboo subjects that no-one talks about’. Anne shares with us her experiences of what she thinks might be the initial symptoms of the ‘Big M’, it’s potential impact on diabetes and of how conversations with her peers are helping her to feel better and get back on top of things. Sharing something this personal that is a ‘taboo’ subject in an open social media space takes courage and I believe has a significant positive impact on others as was shown by the animated twitter threads prompted by the post.

The next story was shared by ShipShape Sharrow, a community organisation in Sheffield, through the medium of video filmed by FunMeFit for Move More Sheffield. These four clips tell a story which begins with Karen and Don, two community activists who both live with chronic pain. Karen and Don, supported by ShipShape Sharrow, have set up a swimming group for others who also live with chronic pain. Janice, Alison, Jonathan and Yvonne tell us their stories of how becoming part of the group is transforming their lives and their health. Karen and Don explain the background to the group here. 

Janice shares how she lives with multiple conditions including anxiety and how becoming part of this peer group has helped her make new friends, relax, exercise and come out of her shell. When asked what she would be doing if this group didn’t exist she quickly replies “nothing, stuck in the house doing nothing”. Sometimes taking that first step over the doorstep can take enormous amounts of courage.

Yvonne tells how she has become part of the group to manage her pain, get healthier and socialise. She says “until I met this group of people I felt really isolated with the condition that I’ve got”. She goes on to explain that since starting the group 10 weeks ago she can now walk. Before the group she could not!

Alison, alongside her son Jonathan, describes how she has had two attempted suicides and struggles with chronic pain, anxiety and depression and has a lot of ‘caring problems’. She shares how becoming part of the group and going swimming gives her ‘the feel good factor’. Alison explains the impact of peer support for her: “It’s difficult to talk to people who don’t have pain about it …If you have chronic pain yourself and you talk to someone else with chronic pain you get that understanding and they have helped me tremendously….They’ve done me wonders…Its been brilliant, I can’t thank Don and Karen enough”. It’s early days for Alison but what really touched me was how when Alison bravely talks about future positive steps, her son leans over and affectionately and gently hugs her.

Each of these people is taking enormous steps to try to overcome the challenges that chronic pain, anxiety and other conditions present to them and not only that but they share with us with great honesty and courage their journeys so far.

The next person whom I was privileged to meet just before Christmas is Kate Allatt (@kateallatt). Kate is founder of ‘Fighting Strokes’ and, my goodness me, she knows a bit about that! I’m not going to tell you her full story as I want to encourage people to buy her book entitled “Running Free” which I went home and bought the day I met her. After suffering from a brainstem stroke, Kate went from being a fell running super active mother-of-three to becoming totally paralysed with locked-in syndrome. Against all hope, eight months later she walked out of the hospital and not only walked but ran again. She now dedicates herself to stroke recovery and travels the world sharing her inspirational story to help others.

Finally, I read a story published by the Guardian which prompted me to write this post about courage, story telling and community. A story written by the brave Mother of an equally brave young woman, Kate Gross who died of cancer on Christmas morning leaving a husband and five year old twin boys. Jean describes how her daughter has written her story in a book ‘Late Fragments’ so that ‘her sons would one day discover who she was and what she held dear’. She shares Kate’s wise words ‘everything has changed and yet nothing has changed. In other words, the petty frustrations and stupid ambitions and general rushing around have melted away, but the good stuff remains. And it’s better than ever’. Jean finishes her story by saying ‘I’ve learned that there is more love in the world than I ever knew and that perhaps all we need to do is learn to ask for what we need”. There is so much we can all learn from the stories told by both Jean and Kate.

All of these people are full of courage in so many ways and they are generous and brave in the way they have stepped forward and shared their stories to help others around them, in their communities and beyond.

Thank you Anne, Don, Karen, Janice, Yvonne, Alison, Jonathan, Kate, Jean and Kate.

In case you missed the links in this post…

Anne Cooper’s blog ‘The Thoughts of a Nurse with Type 1 Diabetes’ and post ‘The Big M – more taboo subjects’

ShipShape Sharrow website

Don and Karen’s youtube clip about their Chronic Pain Community Group

Janice’s youtube clip 

Yvonne’s youtube clip 

Alison and Jonathan’s youtube clip

 Kate Allatt’s website, book ‘Running Free‘ and Charity Fighting Strokes 

Jean Gross’s story published in the Gaurdian on 10 January 2015 ‘Farewell to my daughter Kate who died on Christmas day’.

Kate Gross’s book ‘Late Fragments’ 

Health related story telling information resources:

Patient Memoirs: A site where patients can upload videos

Power of Story Telling by the Innovation Unit

Digital Story Telling by Marie Ennis-O’Connor on Healthcare Social Media

Other related posts I have written:

Blogging: digital led therapy 

65 Patient and Citizenship blogs

Gardeners of connected communities 

Unlocking Foundation Trust Governor Bridges!



Together with two other colleagues from my Trust, I recently came to the end of my term as a Foundation Trust Patient Governor. At our leaving do, there was a wonderful thought provoking conversation which left me reflecting on the bridging role and unlocked potential of Governors.

Governors are a group of people from many different walks of life who bring a range of experience, skills and knowledge and the only people who are on the inside of the organisation without being on the payroll.


Being a Governor is rewarding and frustrating, a privilege and a great responsibility. I started with many assumptions and I left with great respect for the role and my fellow Governors.


There are 147 Foundation Trusts each with around 18 to 30 Governors according to the Foundation Trust Network. Governors ‘represent’ patients, public, staff and partners and form a Council of Governors, part of the formal Governance of a Foundation Trust. Patient and Public Governors are voluntary and elected by the members of the Foundation Trust.


The role and statutory duties of Governors are enshrined in legislation so despite being a voluntary role with only expenses covered it is a role which is formal and has significant responsibility including representing the interests of members and the public, holding the non-executive directors to account, ensuring non NHS activities don’t detrimentally affect the primary purpose of the Trust, appointing the chair and non executive directors and approving significant transactions.


In the formal guidance on the roles and responsibilities there are also a range of less formal activities carried out by Governors, some examples are provided in the section of the guidance titled ‘other activities’. It is these ‘other activities where I think the real value of Governors lies.


At the Trust where I was a Governor, we were involved in a whole range of activities, e.g. food satisfaction surveys, informal service improvement inquiries, working groups and engaging members. In undertaking these roles Governors become extremely knowledgeable about both the organisation and individual services. They are in a unique position as they are committed to the organisation but not paid, they are there to represent members and the public but are ‘insiders’.


As with every aspect of the NHS, the level of impact of Governors depends to a certain extent on relationships and the culture of the organisation. I saw a positive change over time in my role of the strength of voice of Governors within the organisation as trust was built and value given to the insights of Governors.


There are also some basic barriers which I think need to be addressed to help create empowering conditions for elected voluntary Governors and increase their impact and unlock their full value.


People who are considering becoming a Governor or new Governors need to understand the role they are taking on, e.g. there should be a job description and should always be an induction programme and resources committed to training and development support at a local level. Buddying/mentoring with more experienced Governors and with staff could be made widely available. Governors should also have equal access to the Trust electronic resources and as a matter of course an NHS email address and as good practice an online closed forum with the other Governors.


As I got to know other Governors in my time in the role, I realised that each individual brought an incredible and different set of skills and knowledge to the table beyond their valuable experience as patients. We had people experienced in catering, clinical services, business, cultural change, patient engagement and communications, most of this was relatively untapped resource.


Many Governors work incredibly hard, putting considerable hours and effort into supporting the development of their Trust. They are a bridge between patients and communities and the formal system and staff. They have access to an wealth of informal and formal information which gives them a unique perspective and set of insights which is rarely fully heard and utilised.


As a Governor you can speak to patients and staff in a much less formal way than other ‘governance’ roles and at the same time you have access to the Board. Whilst it is not the role of Governors to get involved in the operational side of services, Governors do spend time on the wards talking to patients, observing what is happening, they can work with services to highlight and tackle specific issues, sometimes acting as a sounding board and champion. This also helps them to become more fully informed and more effectively deliver their governance role on the Council.


So whilst I feel privileged to have been a Governor and I was lucky to have been involved in a Trust with excellent management, a very supportive co-ordinator and a really strong team of Governors, I do leave feeling that Governors are generally undervalued and that their true potential is still not fully understood.


Drawing on my own experience, here are five practical ideas for developing the role of Governor:


  1. Governors should be better supported to understand and deliver their role through a clear job description and well resources co-ordination and training and development support.
  2. To aid the development of relationships of trust, budding and mentoring type arrangements could be built across experienced and new Governors and with senior members of staff
  3. Each Governor brings with them a unique set of experiences, skills and knowledge. This should be highlighted and utilised.
  4. Governors should have access to the electronic and other supporting development/communication resources of the Trust. This should include training and support to use offline tools and social media to engage and understand the members of the Trust whose interest they are representing.
  5. Consideration should be given to removing barriers to diversity, e.g. actively promoting the role within under representative communities, shadowing opportunities, times and style of meetings/papers.


On a more strategic note, the Government is undertaking a significant review of NHS Provider Services led by Sir David Dalton. The insights of Governors are incredibly valuable. Their unique role of bridge between patients & communities & the staff and system could be further enhanced. I hope that in that review specific attention is paid to Governors and that in future models this role is evolved and the true potential of this fantastic and unique set of people are unleashed.


I would like to finish this post by saying thank you to the management, staff and in particular the other Governors of Sheffield Teaching Hospital Foundation Trust. It was a privilege to be part of a group of active citizens and an organisation so dedicated to delivering the best possible services and ultimately health and well-being outcomes for the patients and communities it serves.


For further information about Governors:


Formal Guidance: https://www.gov.uk/government/collections/nhs-foundation-trust-governors-and-members-documents-and-guidance

21st Century Patient-Centred Care: A digital citizenship contribution

Before we embark on this new era of healthcare, are we clear about our shared purpose, the end goal of co-creating 21st Century Patient Centred Care? Often we get stuck on building process and infrastructure and forget the real prize is to improve health and well-being outcomes for patients/citizens and communities/populations who live within the context of our healthcare system.

Traditionally we have used the WHO definition of individual health:

A state of complete physical, psychological and social wellbeing, not merely the absence of disease’

Yet we have learnt that our connections and our context are hugely relevant as an individual and as a member of our community. We could look to expand and update our definition, perhaps lending from the Aboriginal definition of health:

‘Health is… not just the physical well-being of an individual but refers to the social, emotional and cultural well-being of the whole Community in which each individual is able to achieve their full potential as a human being thereby bringing about the total well-being of their Community. It is a whole of life view and includes the cyclical concept of life-death-life.’                                                                                                                               

In developing a future healthcare system we need to understand the stakeholders. We need to be clear and honest about what are the different stakeholders current and desired levels of power and interests, legitimacy and sense of urgency. North Staffs was an example where patients had high levels of interests and a sense of urgency but low levels of power and perceived legitimacy. Fundamentally, we need to focus on increasing both power and legitimacy of patients and citizens in the context of healthcare if we are to create authentic empowering conditions at an individual, community and society wide level.

A focus on prevention should be incorporated into a 21st century patient-centred care, it is clearly better for health and for healthcare services if people are able to avoid or minimise the risks of getting long term conditions in the first place.

It is widely acknowledged that the NHS at all levels including in general practice and in foundation trusts should not be operating in a silo and therefore 21st century patient centred care will need to be integrated, involving all stakeholders in healthcare, especially if considering the impact on health of the social determinants of health, e.g. housing, education and employment as evidenced by Marmot. 

No two individuals, communities, or localities are the same, each has a unique set circumstances, stakeholders, assets, networks and relationships. One size will never fit all, we need a system which is flexible and customisable and it is important to remember that because we are dealing with humans building relationships with other humans, the process of development of a solution will always be part of the solution.

In my personal experience as someone living with type 1 diabetes for over 16 years and in my professional life as someone who has worked with communities developing well-being solutions for the same period I have learnt that the foundation for maximising our potential to live well whatever health conditions we live with relates to our feeling of empowerment. Using Self-efficacy and Salutogenisis theory, this is our sense of feeling of coherence and control over the events in our life.

During my time as Director of Altogether Better, we developed the Community Health Champion model deliberately working at scale and within an evaluation and monitoring framework. The evidence we commissioned was not RCT gold standard due to the nature of the research and resources but it we were able to build new evidence around the SROI and impact of ‘empowerment’ approaches. The Community Health Champions approach is a strength based and peer support approach which uses a set of principles which are also used to varying degrees by other approaches such as Asset Based Community Development, Patient Leaders, Expert Patients etc. We have no shortage of good practice examples in this country for each locality/general practice to draw upon – see diagram below.

We learnt that there are a number of factors to achieving this change which I think could be taken up as principles of 21st century patient/person-centred care:

  • The process of development of a new approach and culture is as important as the end product or service because this is about changing how humans interact and relate to each other. This means an approach no matter how successful cannot be simply dropped onto another community, no shortcuts!
  • Improving the level of knowledge of a patient is a key factor in creating empowering conditions but attention must be specifically paid to health literacy and accessibility of information. System broadcasting does not work. Working with champions or early adopters in communities to spread information or supporting patient led initiatives such as digital platforms may be more effective. There is some interesting relevant insights in this Health Literacy research paper
  • Improving connections and social capital in communities and building networks of networks is essential to reduce isolation, unleash sometimes latent assets and synergise efforts and resources. There is stacks of evidence to show the value of feeling connected and the impact on health of feeling isolated and alone including this paper on the link between long term conditions and social networks.
  • Focus on increasing sense of purpose and value and feeling confident. When people feel valued, amazing things happen. Feeling valued and confident in managing a condition, choosing healthier lifestyles and seeking out new information is key to improving resilience and well-being.

During a secondment at NHS England I carried out a piece of research which included a thematic analysis of over 50 publications This resulted in the ‘principles of participation’ which was incorporated into the guidance for CCG’s in delivering their legal duty of involvement. It has since been developed into a bitesize booklet. The understanding and application principles are essential in developing authentic patient-centred care.

Finally, we have an incredible tool which is currently undervalued and underused: digital health. There is a lack of understanding of the definition and scope of digital health in the NHS so I used my MBA dissertation research study to develop one based on the concept of the NHS adopted ‘house of care’.

‘Digital health comprises of new technologies, informatics, geonomics brought together with healthcare for the purpose of co-creating the conditions for empowered patients, integrated person-centred healthcare services, informed commissioning and efficient and effective organisational processes.’

The diagram below shows the current picture of digital health as a ring around the house of care. The potential of digital health is immense and largely untapped from a citizenship perspective, e.g. access to electronic health records, prescribed or referrals to self-tracking devices or peer support via social media and community platforms. See Maneesh Juneja for a digital health futurist view or Dr Amir Hannan’s site for a GP leading the way in using digital to support patients to feel in control or Michael Seres blog for an example of an experienced patient using digital to access care and live well.

The diagram below presents a vision of patient-centred care with the house of care in the centre surrounded and supported by a ring of digital health tools and connected to citizens/patients and communities by a ring of citizenship approaches.

There is incredible potential to co-create 21st century patient-centred care unleashing these two plentiful sets of tools, assets and resources. I feel really optimistic about the future because we already know how to do this, we have the tools, the models, some of the evidence and many amazing people (patients, clinicians, digital folk and others) with the skills, experience, commitment, and most importantly, shared values, to make this happen!


21st Century Patient Centred Care: Digital Citizenship

#cityonthemove A Story of Resilience


 After months of training over 5,000 people put on their running kit and headed off down to Don Valley for the annual Sheffield Half Marathon this morning.  Many more supporters strolled on down to the streets of Sheffield  with our anoraks and umbrellas to cheer them on.

Except it didn’t quite go as planned……er the company supplying the water for the race didn’t come up with the goods and the organisers cancelled the race…about 30 minutes after it was due to start.

Can you imagine the reaction of 5,000 runners pumped up with adrenaline and carbed up on pasta, porridge and jelly babies? People who are dedicated enough to run a half marathon are focused and determined and just to prove it, they set off on their race despite the official cancellation and an attempted police block and earned themselves the twitter trending hashtag #rebelrunners!

Back on the streets, questions were being asked, rumours were rife and twitter was in action #ilovesheffieldhalf and #sheffieldhalfmarathon went from good luck messages to ‘what’s happening’ queries and finally the news leaked out and messages of dismay and sympathy started coming through.

I was one of many supporters standing half way round the course on Ecclesall Road and what happened next made me so proud of the city where I live. Firstly the #rebelrunners appeared and got one of the most rousing applause I have heard in any running race. Then the Sheffield community spirit (The People’s Republic of South Yorkshire) really kicked in, off went the people into shops and cafes and brought out water for the runners. By the time the last runners came through, almost every one of them had a bottle or cup in their hand. So the combined determination of the runners and the empathy and kindness of their community overcame the unexpected crisis experienced by the organisers. This is called resilience!

This heartening story explains the collective power of people and communities over organised systems in crisis. How informal networks (offline and online) can move quickly and act with common sense to cluster around and support those for whom they feel empathy.

There are lessons to be learnt around creating the conditions for thriving and resilient communities here. When people feel connected, a sense of shared purpose and are able to feel empathy for each other, they feel empowered by that connection to take action and unexpected problems can be overcome.

Does this mean then that organic, informal, people power beats mechanistic and formal systems in overcoming a crisis? I wondered today, if the race organisers had reached out to the community for help, what would have happened? Maybe the answer is that we need to strike a balance, make the most of all our resources, institutions, networks, technology community organisations and connectors.

There is an opportunity to do this in pursuit of a better healthier future for the people of Sheffield. Under the banner of Move More Sheffield, people that care are coming together to help make Sheffield a city where everyone has the opportunity to enjoy participating in physical activity. Check out, sign up and make your pledge at http://www.movemoresheffield.com/ and/or follow on twitter @movemoresheff

PS: The full story can be followed on the twitter hashtags mentioned. They really spell out what  I love about Sheffield culture: community, rebellious, down to earth, resourceful, ironic and a great sense of humour.

PPS: You can also show your support for the #rebelrunners and make a difference by donating to WaterAid http://www.justgiving.com/waterless




The NHS: A National Treasure which Belongs to the People!

Earlier this year I came across a picture of a leaflet that really touched me, it was the original information brochure explaining to the public about the new NHS. These words have not left me since….

‘It will provide you with all medical, dental and nursing care. Everyone – rich or poor, man, woman or child – can use it or any part of it. There are no charges, except for a few special items. There are no insurance qualifications. But it is not a “charity”. You are all paying for it, mainly as taxpayers and it will relieve your money worries in times of illness’

The New National Health Service, 1948 Government Information Leaflet


It left me contemplating what has changed about the world around us since 1948 and in that context, what should we hold on to and treasure, what can we improve on and how!

What has changed in healthcare is an increase and change in demand and the model of supply including our expectations, costs of services and medication, complexity of conditions and treatments. The wider context of society has also changed with lifestyle patterns, cultural attitudes, the structure of communities, potential of technology and how we are connected on a global scale. All of which has an impact on the NHS today.

What do we still treasure about the NHS today? It is no longer a single organisation simply funded and delivered in its entirety by the public sector on behalf of the electorate. We are facing unprecedented challenges and change. Cutting across all of the complexity, the golden threads which are the real treasures are not fixed traditional structures but the values, rights, responsibilities and standards, e.g. free at the point of contact, compassionate, caring, safe and not harmful. Much of which is articulated in the NHS Constitution and reiterated across many of the publications emerging from NHS England and the many recent reviews.

This year there has been many debates about what needs to be improved, becoming values led, engaging leadership, better use of innovations, but I am particularly fascinated by the potential of the combination of two aspects; citizenship and technology.

Celebrating the 65th Anniversary of the NHS, the Nuffield Trust put together a fantastic set of stories and views from ‘leaders’ with an interest in the NHS. Well worth a read for some great wisdom and insight. http://www.nuffieldtrust.org.uk/publications/nhs-65

Thinking about the possibilities of bringing together the power and resources of citizens and technology inspired me to begin a search of 65 wonderful stories, resources and opinion pieces written by inspirational people who are living with a whole range of conditions, who have experienced the NHS as a patient or carer of a patient and are using technology and social media to share their stories and knowledge. I have included a few outlier blogs about citizenship and participation too!

Reading these stories is an education, an emotional experience, a journey. There are some very practical insights, some philosophical points and some clear messages for developing a great and relevant future healthcare system! In fact I believe that peer support, lived experience and story sharing should be an integral part of healthcare, perhaps the next version of the NHS constitution will incorporate it?

My list is incomplete and I am hoping that readers will gift me with new blog links that I have not yet discovered to complete the list of 65 amazing stories!

Thank you to every person who chooses to spend time, energy and emotion on sharing their experiences, insights and knowledge. I think you are an integral and vital part of the future of the NHS!

In no particular order and deliberately uncategorised…..

1. Words of wisdom about life, health and diabetes


2. An inspirational story of courage and mental health recovery


3. Brilliant blog from a great guy inspiring and supporting people living with bowel transplants and Crohn’s disease.


4. Blogging about the good, the bad and the ugly of living with diabetes as a teenager


5. An interesting blog promoting the benefits of the diabetic online community


6. Wonderful young man and poet!


7. A man, son, carer on a mission to raise awareness of dementia


8. This man lives life to the full and happens to have MS, great blog and great book to go with it!


9. Really touching and honest blog about living with borderline personality disorder


10. Telling a story with photos and showing us all why people are more than their condition, in this case, epilepsy


11. Great lively blog about living with MS


12. A young world leader in diabetes who is already making a huge difference


13. A powerful woman who inspires me whenever we meet and who has an openness and honesty about her experiences of mental health and self harming which is incredible.



14.  An inspirational and witty blog from someone who is a brain injury survivor and an incredibly generous volunteer


15. A courageous and inspiring blog from a defiant woman about beating breast cancer


16. Beautiful poems to raise awareness of mental health


17. Poems and information about BPD


18. Lovely blog sharing the journey of a Mummy of a beautiful child who has Down syndrome


19. Activist for dementia care


20. Thoughts, experiences and feelings about living with MND


21. Eclectic blog about breast cancer


22. Writing about writing and experiences relating to breast cancer


23. A blog sharing the tales of an adventurous diabetic


24. A whole family blog about living with diabetes type 1


25. A beautiful and insightful journey of living with long term conditions


26. A GP and person in recovery sharing insights


27. A frank and honest blog of a woman with living with Crohns disease and a colostomy bag


28. Insights from a graphic designer who cares for his Mum who lives with dementia


29. Beautifully written blog about living with bi-polar disorder


30. Important blog about suicide prevention


31. Honest and revealing blog about living with MND


32. Written by a woman who has had breast cancer ‘Life is what happens to you while you’re busy making other plans” (John Lennon, 1970)’


33. A blog from a woman who after diagnosis with breast cancer decided to start a blog to write, scream, curse, laugh and cry about it!


34. Life with type 1 diabetes


35. Wise words on digital health and citizenship


36. Rebellious blog from a breast cancer survivor


37. Insightful and challenging blog from a longstanding community health activist


38. A resourceful and community based blog about surviving breast cancer


39. Informative and supportive blog written by a carer of a father with dementia


40. Blog about both motherhood and living with MS


41. Poems for children with autism


42. A great blog about living with MS


43. Insightful musings on living with a mental health condition 


44. A blog aimed at supporting people with psoriasis


45. Beautiful narrative from the Dad of a daughter with Down syndrome


46. An informative blog written by a man whose sister has learning disabilities


47. Living with COPD


48. Living with type 2 diabetes: an education


49. Living with type 1 diabetes from a parent perspective


50. Really informative blog about living with diabetes


51. Tales of everyday life living with diabetes


52. Worldly insights from the perspective of Rethink Mental Health Illness CE


53. This blog cuts through the usual divide between patient, carer, NHS leader and citizen giving valuable unique insights


54. Tales of family life and living with type 1 diabetes


55. Insights and stories around mental health 


56. Beautifully written blog about the NHS 


57. Creative, visual and informative Blog about the Coping with the Big C 


58. Honest and open blog about caring for Nan who has dementia (with guest blog from Nan!)


59. Something very special about this lady and a very honest account of living with Crohn’s disease


60. An education about living with the impact of PTSD


61. An honest and informative blog sharing the experience of living with epilepsy 


62. A personal journey and some helpful hints on living with breast cancer 


63. A blog about life on the transplant waiting list 


64. Energetic blog from an inspirational young woman about living with a heart condition


65. An informative and open blog about living with a neurological condition 



Some links where there are lot of great blogs in one place: 

Good source of blogs for parents 


Time to change




If you know of other amazing blogs please do share links either in the comments below or  tweet me @roz_davies 




Gardeners of Connected Communities


Cultivating the Conditions for Citizens and Communities to Flourish

#psicare Connected Care Camp 

I believe that the place where the most sustainable, deep rooted change takes place is in communities. The process of a group of people who have common purpose coming together to make positive change is as important as the end product. When we work through our differences and work on problems together in the right conditions we can build trust, respect and strong foundations which will help us individually and as a community become more resilient and healthier.

On Saturday7 December 2013 a community of thoughtful people with great integrity and commitment came together with shared purpose, we all believe in the potential of connected care to improve the well-being of people. It was called the Connected Care Camp! Summary and reflections from the camp organiser Shirley Ayres http://bit.ly/1hO8gxF

The resources in the room were incredible, every person had experiences, knowledge, ideas, connections and much more to share. The journey of the day and conversations were facilitated not controlled and the community began to flourish, new relationships were started, teams formed and ideas and knowledge merged to create new innovations.

Set in this context, I was privileged to be able to spend some time with Ally Cameron, (a co-production expert) and an amazing, diverse group of others including Laura Robinson, Paul Webster, Joost Beunderman, Graham Shaw and Mark Tyson to consider the question:

‘How do we create the conditions for activities and ideas emerging from citizens and communities to flourish’

Here is a summary of the ideas and principles which emerged from our conversation:

  • Open up physical spaces in which we all feel comfortable connecting with each other.
  • Identifying the first spark, the common purpose which brings us together, from there many other ideas and activities may grow. This first spark may not be the obvious hook but will be a starting point from which to form new relationships.
  • Work together to help reshape the public sector to feel comfortable with community messiness
  • Work with connectors/community champions to reach into communities and build relationships of trust and integrity
  • Maximise the potential of digital technology to enhance citizenship, connect communities and grow grassroots ideas. Value how it flattens hierarchies, removes barriers, adds choice but also remember there is digital exclusion, support for digital inclusion, other options and choices must remain.
  • Fundamentally, we must spend time together exploring our shared purpose and this must be authentic
  • Truly value our whole selves, all our resources, talents, knowledge and ideas. Respect our diversity, understand our different expertise and unleash all from traditional labels and roles.
  • Work towards equality of power where we all feel equally able to participate requires great personal awareness and challenge but reaps great rewards.
  • Build a constellation map of everything we already have to achieve what we would like to change together

We recognised that the creative process of co-design is important as the end as it facilitates the building of shared understanding and purpose and helps to build trust and relationships. This explains the problem with scale up, taking a successful model from one community and simply dropping it on another. However, we can be inspired by and learn from examples which have co-produced great results, so here are just a few examples suggested by Ally and Joost..

Wandsworth Community Empowerment Network http://spaa.info/

West Norwood http://westnorwoodfeast.com/about

Stockport http://bit.ly/1bEU8Tb

For those interested in leaning more about some of the approaches and theories:

Co-production http://nomorethrowawaypeople.org/
Asset based community development
Timebanking http://www.timebanking.org/
Salutogenesis http://www.salutogenesis.hv.se/eng/Salutogenesis.5.html
Measuring the impact -LSE http://www.pssru.ac.uk/pdf/dp2772.pdf



My personal reflections from the Connect Care Camp:

My own personal reflections from the connected camp day were about the interactions between people and how in the real world we can all feel trapped in our labels and roles, e.g. ‘Patient’, ‘Nurse’, ‘Chief Executive’. Although these roles are an important part of us, we are all so much more than a job or a health condition. We all have life experience, ideas, passion and commitment, connections, resources that reach way beyond the boundaries of administration.

I would also like to add a little personal note to Ally Cameron. She came to the Connected Care Camp and shared more than anyone, her life story and her knowledge and expertise around co-production. Amongst the many things I learnt from Ally on this day, I began to understand that when someone gives something so personal like their story, to others, just like the transference of energy, it takes something too, there is a consequence. This gift and the impact of giving must not be undervalued or underestimated. So thank you Ally, I really appreciate all that you shared, your personal story, your valuable insights, your expertise and your great big kit of knowledge and examples of coproduction!

Social Determinants of A&E

foundation crack

As we enter the winter months, there has been much debate about the capacity of A&E services to respond to the demand safely and with the expected quality standard.

 I was reading through twitter news a short while ago and read an excellent blog written by @Roylilley on A&E, there followed a really thought provoking tweet exchange with @RobWebster_LCH which led me to write this blog…

 My interest comes from being a Foundation Trust Governor, a citizen living with a long term condition and having worked for over 18 years with communities around improving well-being.

To start with an analogy, when a house has a cavernous diagonal crack across its brickwork, how do we respond? We can cover up the crack, add a little filling which might work for a bit, but it doesn’t tackle the root cause so will just get worse. The best solution which might take a little longer is to look to the foundations, check for subsidence and investigate why this might have happened and resolve that problem.

Whichever way you look at it A&E problems are a symptom of a deeper complex issue in our society and our communities.

 It might be helpful to look to the well researched ‘social determinants of health’ as spelled out in the seminal Marmot Review of Health Inequalities. http://bit.ly/16od0DG

Where we live, the state of our housing, our level of income, how friendly we are with our neighbours, how connected and active our community is, the level of our literacy and education, how safe we feel, our level of self-esteem and mental well-being are all important factors in our health and subsequently linked to A&E admissions. For example if loneliness is as harmful for our health as smoking 15 cigarettes a day and is scientifically proven to impact on our immune system (check the ‘Campaign to end loneliness’ research resource http://bit.ly/16odtFO) how does this play out for the most vulnerable older people in the winter months. And if loneliness is the root cause, what could be the resolution and whose responsibility is it?

On my street, there are many different types of households, some new young families, some students, some older people living alone who have lived in the street for most of their lives. We don’t have street parties at Jubilee and the houses are terraces with only a foot wide front gardens and no driveways but we are adjoined and can see into each others kitchens and over the back fence. There are about 100 households in total, I know about 25% well and about 50% a little.

When we first moved in, three doors up there was an older lady, living alone since her husband had died. We didn’t see much of her but had quick chats when we met. One Christmas I said to my husband shall we invite Mrs x over for lunch on Christmas Eve, we didn’t get around to it, something I will always regret. A few days after that Christmas, she died. After not seeing any movement for a couple of days, on Boxing Day her next door neighbour alerted the police and she was found unconscious, rushed to hospital and died not long after.

From then on my husband and I made a resolution to keep an eye out for our other older neighbours and I have really begun to notice the connections and social capital across our street e.g. the children all go to the same school, there are at least 5 NHS workers on our street and we have this great Bike Shop at the top which is a bit like Desmond’s Hairdressers they serve good chat and free croissants on a Saturday morning! So to give some examples of how we are helping reduce A&E admissions and inpatient bed days. The gasman who lives on our street left his wife wrapping presents to fix our boiler on a very cold, snowy Christmas Eve when I was 8 months pregnant, he also made safe the antique gas fire which an older neighbour was using as a sole source of heat. A Dad of 3 young children cleared a path along the whole street of really slippery ice. The GP across the road on more than one occasion has been our ‘out of hours’ service. We took another older neighbour who lives alone, a toothbrush and PJ’s to hospital when he got knocked over and brought him home, whilst others providing him with meals and filled his cupboards, we were his ‘care plan’. That’s just a few stories of many.

So how can we enhance this feeling of community and create more resilience, ‘the capacity of a system, enterprise or a person to maintain its core purpose and integrity in the face of dramatically changed circumstances’ (taken from amazing book @resilience)

Well, there are some excellent tried and tested ‘evidence based’ approaches, for example

Theses approaches take time, a little money, collaboration and a big change of culture!

There are some key principles involved which have to be not simply paid lip service too but taken to heart, e.g.

  • Public services and institutions must change their role from paternalistic to facilitation
  • We need to move from a one dimensional deficit model to also recognising the wealth of resource in our people, our connections and our place
  • Actions must be driven by what citizens and communities think are important not what ‘outsiders’ think should happen. This has to happen in each  community/neighbourhood.
  • Each community has to experience the process of building connections for themselves, it is this process as much as the final outcomes which creates value.
  • Community facilitators and connectors are an invaluable part of change
  • Building relationships and trust across communities is key
  • People need to feel valued, and when they do, amazing things happen.
  • Digital can enhance although not replace offline connections
  • And finally Margaret Mead puts this one better than anyone… ‘Never doubt that a small group of committed citizens can change the world, indeed it is the only thing that ever has’.

So here are some ideas which might help resolve the A&E crisis…

  1. Foundations Trusts and others could identify the geographical communities which are attending A&E the most and work with Community Organisations and fund a Community Builder in those areas to work on how the community can help itself.
  2. CCGs could look at the idea of engaging with people ‘Care Connectors’ who would be interested keeping an eye out for older or vulnerable people, bring groups/neighbours together when needed, e.g. Shopping rota’s when it is snowing and who can signpost people to services and community activities. People who could have a direct link and relationship with the Foundation Trusts.
  3. ‘We Care’ app which can be used by a street to build a contacts list of neighbours and what they offer and who to ‘look out for’ e.g. keep an eye on Eric’s curtains to make sure he is ok, or ‘I have a spade and brush and happy to clear up snow for others’.
  4. Engage people who are attending A&E the most and work with them on potential solutions. Check out Dr Hotspot http://to.pbs.org/Hrm9m0 for hard evidence of reduction of admissions and costs!

 And here are some existing examples..

 Living Well Champions in Sheffield http://bit.ly/18FmmI4.

 Casserole Club http://www.casseroleclub.com/

 Forever Manchester http://forevermanchester.com/

Tyze http://tyze.com/

Experience led commissioning http://bit.ly/18Fqhoa

Connecting Communities C2 http://www.healthcomplexity.net/

Street Associations http://www.streetassociations.org/

Rallyroundme https://www.rallyroundme.com/welcome

Jersey Post Community Service – http://www.jerseypost.com/personal/call-check/


The answer and the responsibility for the ‘A&E’ crisis doesn’t just lie in the place where the cracks show, actually the answers are at the root foundations, in communities. It lies in connected communities where people know and care about each other and feel confident and able to ask for help and give help, sharing what they have.

Please do post any excellent examples of building connected communities and tackling the social determinants of A&E.

Diabetes Glass Half Full…


Glass half full….

Living with type 1 diabetes since I was 27 has given me a sense of ‘Carpe Diem’, seize the day, make the most of every moment. People also ask me how I fit so much in, where do I find the energy and sometimes I tip the balance, but I am driven by that zest for life that comes with a realisation of mortality!

Coping with diabetes has given me empathy and awareness, meeting the physical and emotional challenges of adapting has given me strength and resilience. I have met wonderful new friends and have changed my direction of travel at work to one where I hope my personal experience and passion is helping me to make a difference.

There are some important factors which help me to live well with diabetes including being well informed, feeling confident and in control of my health and life and feeling connected and being supported by my family and friends. Completing the DAFNE course (dose adjustment for normal eating) http://www.dafne.uk.com/ made a big difference too, an opportunity I believe should be offered to every type 1 diabetic and could be delivered by (paid) expert patients! 

I generally take far better care of myself than I did pre-diabetes, drink less, exercise more (although could do better on both of these accounts), and I am generally more self and health aware.

Best of all, as any woman who has had diabetes before and during pregnancy will tell you, the emotional turmoil and physical discipline which goes into having a baby has made me absolutely treasure my two wonderful and thankfully healthy children and made me consciously feel great appreciation of them every day!

So whilst it is sometimes hard living with diabetes, (I would like a day off of calculating carbohydrate portions, injecting and monitoring every now and again) and yes, the future is uncertain, (it is a joke in our house that diabetics are at a higher risk of everything on the planet), the negative stuff is not the whole picture. Actually with the disadvantages also comes some precious gifts, especially valuing living and those around you.

I think we (in healthcare) tend to view long term conditions as a deficit, always talking about the costs, the complications, etc but I just wanted to share that actually there is another more positive dimension to diabetes.

Would love to hear from others with long term conditions on the silver lining for them….