Courage, Story-telling and Community!

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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 

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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!

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21st Century Patient Centred Care: Digital Citizenship