Sharing Sheffield: Bridge Building

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‘The most common way people give up their power is by thinking they don’t have any’   Alice Walker

I wrote a blog at the turn of the year called Sharing Sheffield motivated by a sense that we are at a sliding doors moment in setting the future direction of the world, our country and the city where I live.

There is no doubt that we are living in a time of great change, and that for better or worse, old systems are breaking down and new patterns are emerging. On the one hand environmental, social, political and economic issues at all levels are looking pretty bleak but on the other hand humanity is offering up hope and new possibilities.

The immediate response, kindness, resourcefulness and courage of local communities and public services in the face of the recent terror attacks in the UK and the Glenfell Tower tragedy, was simply incredible.

What emerged for me was the power of everyday people to come together and make a positive difference, and the value of public services which are able to respond to a crisis and work in partnership with communities for the common good. These horrible events highlighted more than any randomised control trial or formal research project the importance of building communities which are compassionate and connected where people feel empowered to come together and take action for the benefit of others, both people they may already know and complete strangers.

The idea around Sharing Sheffield was that the formal health and care system is really important and necessary and should be cherished, valued and properly resourced, but also that much of what affects our health and wellbeing happens in our communities. The Health Foundation have recently released a report which states ‘as little as 10% of a populations health and wellbeing is linked to access to health care’, the rest includes social networks, money and resources, food, education, housing, environment and transport.

The Sharing Sheffield blog post was about valuing what happens in communities and finding ways for the formal system to help create the conditions where more power and potential can be unleashed.

In response to my blog and challenge, I was approached by Sheffield CCG (local NHS commissioners) to help design and facilitate the next ‘Shaping Sheffield’ event. Together with Janet Harris from the University of Sheffield we set about using some of the principles and practices around community development to create the idea of ‘Sharing Spaces’. We invited people with a specific interest to host a Sharing Space. Each Sharing Space also included a community activist who acted as a facilitator and a senior public service leader. Around 200 people from many different walks of life came together and we ended up with 7 Sharing Spaces focusing on; Older people, Transition, Food Revolution, Skills Sharing, Crowdfunding, Move More and Children and Young People.

We started with everyone together exploring our hopes for the day and our ground rules/shared values. An emphasis on respect, inclusivity and collaboration emerged. One great activism ground rule I really liked came from Richard Fletcher  ‘If you are going to oppose, propose’!

In the context of the specific focus each group explored their shared goals, what resources they had in the group, what outside help was needed and small next steps.

Bringing people together

At the end of the day we came back together and shared our reflections. One of my favourite moments of the day was listening to the CCG Chair, Dr Tim Moorhead sharing what he had learnt about crowdsourcing from Sheffield Soup founder Pennie Raven. He promised to meet up with her in the future to explore how he and the system could help but he also recognised the importance of ensuring the system did not negatively affect the essence of what makes Sheffield Soup so fantastic.

Finally, at the end of the day we stole an idea (with permission) from Victoria Betton of Mhabitat and hung out our reflections, views and ideas for all to see on a washing line!

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We asked each of the groups to record their discussions and I have put this together in a digital report which has been published on the CCG website.

For me, what came out of the event was that we were just scratching the surface of the power and potential of what is happening in our communities. There is a need to build a bridge between the formal health and care system and communities and re-negotiate the relationship between the two.

Perhaps it is time to turn the whole thing on its head and understand that people and groups in communities are the frontline for our health and wellbeing. Collective community leadership needs to be valued and encouraged and the formal health and care system should be seen as an asset to communities not the other way around!

To make this happen bridge builders from within services and communities will need to create safe Sharing Spaces for open and honest dialogue and explore and transform the current power dynamic so we all become more powerful together and make the most of the amazing resources we have in our people, communities, public services and our place.

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Yes, we are experiencing uncertain and very difficult times, but Alice Walker recognised that we each have the power to affect the future in our gift. Another female activist Helen Keller recognised the importance of bridge building and sharing that power for the collective good…..

‘Alone we can do so little, together we can do so much’  Helen Keller

#WeStandTogether

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Self Care Toolkit for Diabetes

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I was recently invited to take the rounding up slot at the end of a local event hosted by the Sheffield Diabetes UK group.  This post is a summary of the event and my presentation.

Minion Centred Care!

GP, Dr Ollie Hart kicked off the day with a glimpse of what a 21st century primary care experience might look and feel like. With the help of Minions, he somehow translated the concept of person centred care, patient activation measures and social prescribing into something we could all understand.  I think he is really on to something, he has found a methodology which helps an overstretched formal health/care system move towards working in partnership with patients. He starts with what matters to the patient, providing different responses to different needs, re-allocating resources where they are going to have the most benefit and recognising that often most of what affects our health is not in the sole gift of clinician although they can influence and help in many ways.

One thing he said which has really stuck with me was for people who were least engaged in their health and struggling ‘the mindset shift was the most important step’. This made me really sit up and think. Mindset shift is personal and emotional, it can’t be fixed in 10 minutes with medication.

Dr Hart then went on to explore the link between primary care and community. He has recognised that for some people building connections with people they can identify with, growing confidence, skills and knowledge, taking little achievable steps can make a difference but isn’t in the gift of the clinician. In Sheffield, social prescribing has become the tool for building that bridge working with community health champions, health trainers and other activists who help others in their own communities. This is beginning to look like a new model of 21st century care to me!

Missing Jigsaw Piece?

Later a specialist consultant, Dr Jackie Elliot shared with us how Sheffield is doing against targets and comparative areas/trusts. There has been some incredible improvements in the outcomes for younger people which is really important given the length of time they will live with diabetes and the impact optimum control is likely to have on their long term health. Further good news is that Sheffield is hitting most of the expectations around the annual assessments it is recommended people with diabetes receive. This is a good thing as if anything goes wrong it is usually better to catch it early. So it looks on the surface at least as though we are getting good clinical care in Sheffield and certainly that has been my experience. All the recommended service boxes are ticked most of the time for me! However the patient outcomes measurements which are blood sugar level (HbA1c), blood pressure and cholesterol are very poor for both people with type 1 diabetes and type 2. I was quite shocked by this, if the recommended clinical care is good, why then are the results for patients not matching? It made me think about a recent Health Foundation report which said this:

‘The greatest influences on our wellbeing and health are factors such as education and employment, housing, and the extent to which community facilitates healthy habits and social connection. Access to health care could account for as little as 10% of a population’s health and wellbeing.’

I wondered if Diabetes care in Sheffield took Dr Hart’s approach to working in partnership with patients using person centred care approaches, patient activation measures and social prescribing, would those targets improve?

The Future is Bright!

I went to a workshop later in the day led by a young woman Lydia Parkhurst who shared her story of being diagnosed with type 1 diabetes and using digital as part of her self-care. You can read all about her experience on her blog; The backpacker and the pod

For me, it was an inspiring and hopeful presentation not just in the context of diabetes but also the future of health/care and society. Perhaps we might one day have another female prime minister with type 1 diabetes?

Self-Care Toolkit

So, my daunting task was to finish off the day. I chose to talk about what I think should be in our self-care toolkits. Keeping it simple I identified 6 items. The first three I think the system has pretty much got covered although we do know there is enormous variance (the postcode lottery of health/care is alive and kicking). They are:

  • Medication and basic blood glucose monitoring kit
  • Access to expert clinical care
  • Education

All three of these have made an enormous difference to my life and I am truly grateful to all who set up and run the NHS, who research and improve the clinical care and medicine which has kept me alive.

For people who don’t know, structured education in diabetes is recommended by NICE and I can say from personal experience, DAFNE (the type 1 diabetes structured education) transformed my life and clinical outcomes. My ability to lead an independent and fulfilling life, contribute to society in many ways and keep fit and healthy has all been enabled, at least in part, by attending a week-long course.

I gave an example of a story where a couple of hours after giving birth to my second child, I realised I had the symptoms of Diabetic Ketoacidosis and was able to treat myself by testing for ketones and using the sick day rules. None of the health care professionals in the labour ward at that time knew as much as I did about how to manage my diabetes.

Whilst I think the formal health/care system has got the first three tools in my kit covered there are three others which I think there is still work to do on both the value that is placed on them and how clinicians and patients work together to build them into our self-care toolkits. They are:

  • Community/Peer Support
  • Digital Resources
  • Mental Health

Community

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Starting with Community, there is now clear evidence of impact and return on investment of the impact of social networks and peer support, e.g.

  • Social networks improves self-management and physical and mental well-being, helps people to cope with their condition and can produce substantial saving health/care costs (2014, Reeves et al)
  • ‘There is evidence that peer support can help people feel more knowledgeable, confident and happy and less isolated and alone’ (2015, Nesta/National Voices)
  • Loneliness is as damaging to our health as smoking 15 cigarettes a day (2015, Holt-Lunstad)

I have benefited a great deal of peer support ranging from practical information to moral support and inspiration. Anne Cooper, Alex Silverstein, Laura CleverlyDavid Craggs Andy Broomhead Hazel and Tony Blackbourne to name a just few people from the Type 1 and Type 2 Diabetes Communities.

Here are a few places to connect to other people with diabetes online and in Sheffield

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Digital Resources

Next up for the diabetes self-care toolkit is Digital Resources.

There is no doubt that whether you like it or not digital resources are a growing part of our diabetes self-care toolkit. From ordering repeat prescriptions to continual blood glucose monitoring, if you are not online and using digital as part of your self-care, you are losing out. Don’t take my word for it;

‘With more than 100,000 health apps, rapid growth in wearables and 70 per cent of the UK population now owning a smartphone, digital technology looks set to revolutionise the future of health and social care’ (2015, Deloitte)

Digital Health includes a wealth of possible self-care aids including apps, wearables, sensors, self-trackers, social networks, artificial intelligence, robots and genomics which could not only make life easier but in the long run may also potentially cure or eradicate diabetes. If you are interested in where the NHS is heading you can read the National Information Board strategy; ‘Personalised Health and Care 2020 (NHSE/NHS Digital Strategy’

I have personally found digital health really helpful as an information, motivational and organisational self-care tool and previously presented my views and experience here.

If you don’t feel confident using digital resources it is worth having a look at Good Things Foundation Learn My Way. If you work for or in partnership with a CCG there is a brilliant new digital inclusion programme you may be able to get involved in!

Below are just a handful of digital resources available for people living with diabetes and a very handy tip from the wonderful patient advocate Derek Stewart OBE

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Mental Health

My third recommendation for the diabetes self-care tool kit is looking after your mental health.

Whichever way you look at it, ’cause or consequence’, there is a close association between mental health and diabetes, here’s what the evidence says;

  •  ‘Patients with diabetes are at higher risk of mental health disorders — including depression and psychotic disorders — than the general population. Likewise, patients with mental health disorders are at higher risk of developing diabetes’ (2015, The Lancet)
  • 41% of people with diabetes have depression. It is at least twice as common in people with diabetes as the general population and between 30-50 per cent of cases are undetected (2010, NHS Diabetes)
  • 68% of people with diabetes who say they need psychological support do not receive it (2014, Diabetes UK Care Survey)
  • ‘Depression is known to have a number of effects on the ability  of a person to look after themselves and manage their condition. For example, depression can exacerbate the symptoms of diabetes by affecting a person’s ability to control their diet or manage their medication.’ (2012, Coalition of national charities)

Despite there being clear evidence of the link, I think we are a long way off treating diabetes as a mental and physical health condition and caring for people in an integrated physical, mental and social way. In 20 years of receiving excellent specialist clinical care, I have never been asked about my mental health in a diabetes care context. For the record, I have had anxiety, depression and what is called diabetes burnout and it has affected my ability to self-care.

On a more positive note, I am privileged to say that I am the managing director for Sheffield Flourish which is an award-winning charity and community network which aims to support people living with mental health conditions to (re)build the lives they wish to lead. Together we have built a digital well-being community hub and we are beginning to further develop the Sheffield Mental Health Guide. In Sheffield we also have an IAPT service which provides psychological therapies for people living with mental health conditions.  I am also a non executive director for a brilliant organisation Care Opinion which provides a digital tool to help patients to share their health/care stories and influence future experience of care. All useful resources freely available for all in Sheffield.

Gratitude

I am truly grateful for the life saving insulin, the free at the point of contact amazing clinical care and the structured education I have recieved. I read recently in a local magazine that in 1921, a rich steel baron from Sheffield became the first person with type 1 diabetes in the UK to use insulin. So 100 years ago I would probably have died not too long after my diagnosis.

It is worth taking a moment to appreciate the NHS and how far we have come in 100 years, and also to make the most of all the resources we have available to help us self-care and live as long, healthy and happy lives as possible.

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A big thank you to Andy, Hazel, Tony and all the volunteers who work tirelessly to bring people with diabetes together to help them build the confidence, knowledge and connections they need to manage their own diabetes.

Full presentation here: Sheffield Diabetes (2)

 

 

 

 

 

 

 

 

ShaRing Sheffield

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Sheffield is an amazing place to call home. Big enough to offer opportunities, small enough to feel the warmth of community, green enough to enjoy the outdoors, built up enough to have a diverse range of facilities. Something for everyone!

Sheffield is not without its challenges. Health inequalities, homelessness, poverty, youth unemployment and mental health issues to name a few.

Set in the context of  significant changes for health and care, Sheffield  has developed a plan it is calling ‘Shaping Sheffield’ which is an attempt to bring together a complex web of strategies and services.

Towards the end of last year, Greg Fell (Sheffield City Council Director for Public Health) and Judy Robinson (Sheffield Healthwatch Chair) asked me along with Mike Simpkin and Dr Ollie Hart to share our insights on how we might do things differently in Sheffield to achieve better health and well-being outcomes for all in our city.

We were given five minutes each to get our messages across! This blog is an extended version of the presentation I gave on moving from ‘Shaping Sheffield’ to ‘ShaRing Sheffield’.

In preparing for this presentation, I asked three inspirational leaders from very different backgrounds for advice on how I could deliver a presentation which doesn’t just get a well done and a clap (if I’m lucky) but also leads to real action.

Rob Webster, CE of South Yorkshire Partnership NHS FT  said ‘show the added value’.

John Farenden, Director Health Advisory, Ernst and Young said ‘keep it simple’.

Chief Inspector Umer Khan, Greater Manchester Police said ‘get a small public commitment’

So with that in mind here was my tuppence worth….

Having worked for local government and the NHS, I have a great deal of respect for our city leaders. The challenges they are grappling with are incredibly complex. This is a time for visionary and radical collective leadership and transformation!

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We must also consider the wider context and ‘wicked’ issues around us. Austerity has hit public services and citizens hard. According to Joseph Rowntree Foundation, we now live in a country where 13.5  million people are living in poverty. The latest Mori Poll Trust Survey shows a further dip in the public trust of politicians down to 15% (although they do still trust Nurses at 93%)! Elections and referendums are being won on populist spin and soundbites.  In the 1980s, multi-year ice made up 20% of the sea ice cover. Now it’s only about 3%, Children spend an average of 6.5 hours a day in front of a screen. The fourth industrial revolution has arrived. Economic, political and environmental uncertainty are all directly or indirectly having an impact on health and care services. On one level with transport infrastructure and digital communication systems we are more connected with the rest of the world than we have ever been but on another level, we are increasingly lonely, isolated, fragmented and divided.  We are living in a time where the old systems are breaking down, locally, nationally and globally and quite possibly we are at a sliding doors moment.

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So moving the deckchairs on top of the titanic is not an option. We need to look up, use every resources and tool we all have to identify what’s ahead and navigate a clear path to a destination we all want to get too!

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One thing is for sure, the world around us is changing and Charles Darwin had some very wise words on survival in the context of change:

‘It is not the strongest of species that survives, nor the most intelligent, but the  one most responsive to change’

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Most of my work over the last 20 years has been about building stronger more resilient sharing communities which are more able to be responsive to change. A book I would recommend to read about this is Resilience; Why Things Bounce Back by Zolli and Healy. They talk about resilience as being:

‘The capacity of a system, enterprise or a person to maintain its core purpose and integrity in the face of dramatically changed circumstances’.

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So as the old system breaks down around us and significant change occurs, the big question for those of us who can imagine the best possible future where people of all backgrounds, ages and abilities can thrive is:

‘How do we build more responsive and resilient communities and health and care systems together?

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We need to develop a local sharing economy, build connections and sustainability from the grassroots up and focus our collective efforts on unleashing and sharing everything we have in our communities which will help build more responsive and resilient communities.

The first step is to understand what we already have in our people, place and organisations which will help us to achieve our goals.

It took me less than a minute to come up with the short list above. We have 1,000’s of trained and motivated community health activists in our city, unknown numbers of wonderful informal grassroots groups and a vibrant formal third sector. We have at least three homegrown digital health community resources – Sheffield Flourish, Patient Opinion and Move More Sheffield and one of the largest local health and social care systems with enormous recruitment and procurement power, not to mention their patients, carers and volunteers. We live in the greenest city in the country, have two big Universities and a number of excellent colleges. Sheffield also hosts a number of national cultural events, e.g. DocFest and World Snooker and has thriving cultural community!

Understanding how to create the conditions where we can share what we already have in our local communities and unleashing the potential of all of this abundant resource to improve health and well-being is where the added value comes in! The resources to improve health and well-being are not just tied up in formal health and social care services or even in voluntary sector services.

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Here are some principles for creating a ‘Sharing Sheffield’.

Coproduction: The first place to start is with building trust, understanding purpose and responsibility. Genuinely listening with intent to understand to people who feel disempowered and vulnerable, creating safe spaces for real dialogue where different opinions, insights and ideas can be voiced and valued. Learning together what we all need to live well, what gets in the way and what are the resources and restraints we have to work with. At its best this is called ‘Co-production’. Many ‘professionals’ worry about this term and others complain that it is ‘jargon’, it is a very simple concept, but very complex and difficult to achieve. The biggest barrier is that we don’t all understand the value of sharing power or understand how to share power. My top tips are to start small, early and quietly and be genuine with intent, respectful and open to diverse opinions and ideas. Here are some useful resources:

A Book: No More Throw Away People, Edgar Cahn 

A Video: The Parable of the Blobs and Squares 

A Blog Post:Co-production, Radical Roots, Radical Results, Ally Cameron

Skills, knowledge, connections: As someone who lives with a complex long term condition (type 1 diabetes), I have really valued having the opportunity to develop the skills and knowledge to self manage my own condition through evidence based structured education (DAFNE) and I have had an amazing amount of peer support from being connected to my community and used digital technology in many ways to improve my blood sugar control and lifestyle! In so many of the health related initiatives I have been involved in, from Community Health Champions to Sheffield Flourish, peer support has been a key theme for improving well-being. Salutogenesis theories including Self Efficacy provide evidence based explanations as to why this should be an important part of health.

Unleashing Potential and Self-Sustaining: Whilst there is scarcity in formal health and care services, there is abundance in resources in communities. There is most certainly not an abundance in financial resources, austerity has hit the most vulnerable hard but there is an abundance of talents, ideas and insights in our people which is untapped because of where we place value in our society. Imagine if we valued a whole range of contributions from time spent chatting, cooking a meal, mending a fence, showing someone how to skype their overseas relatives…….This idea is not new, sharing economies are being (re) built in many places. In Sheffield we already have a brilliant Timebank led by St Mary’s Church, we have Sheffield Soup and many different volunteering activities where people are sharing their skills, time and energy across the city. With a little financial resource and a lot of shared efforts, an amazing amount of talent and resource can be unleashed.

Alongside the informal sharing economy, the formal public and commercial system has an incredible amount to share, from formal purchasing and procurement power to opening up facilities to local community groups and corporate social responsibility volunteering.

Imagine if Sheffield took on the Incredible Edible idea across the whole city with the public sector and commercial organisations releasing land and other under utilised resources.  We already have the amazing Regather and Abundance and a whole bundle of new food ‘pay as you feel’ projects flourishing like Real Junk Food  and the Food Hall Project 

Brave Leadership: Geo politics shocked the world in 2016.  One of the more positive resuIts has been an increase in powerful, thoughtful leadership  from many different places. Henry Mintzberg has written an excellent call to action post and there was one particular tweet which stood out for me over the US elections written by J.K. Rowling:

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Now more than ever we need brave and visionary leadership which imagines the best possible future, holds the line on our values and creates the conditions where everyone feels included and valued and able to contribute to building that future. I think this is going to mean feeling empowered to bend or even change the rules which don’t make sense and negotiating a new contract between citizens and government. Like it or not health and care is at the forefront of this complex change. Check out Helen Bevan’s twitter feed for insights on leaders of the future.

There is no doubt that digital technology is part of the future, for better or for worse. It is disrupting every area of our lives; Taxi’s (Uber), Holiday’s (Air BnB), Shopping (Amazon) and health is no exception. In the last year I have begun sharing how digital has had an impact on my life and how it has helped me manage my condition. Digital is changing how we are connecting with each other and given us new channels for sharing, including through ‘Peer Support’. One excellent example is #BPDChat set up by Sue Sibbald who from her base in Sheffield has created a supportive network which reaches out all over the world every Sunday evening.

There are issues with using digital which need to be understood and resolved. The biggest one is ensuring that individuals are empowered to use digital in a way that is helpful not harmful to them. Jamie Bartlett of Demos has carried out some interesting investigations into the dark net including in health. The Good Things Foundation explore more on how to improve digital literacy. We have trained and support Digital Ambassadors to go out into communities and waiting rooms and help others to go online and use Sheffield Flourish.

Wider Determinants of Health; A running theme through this post is that it is really important to understand that most of what affects our health is not in the gift of a clinician to resolve but the health and care system must understanding and  influence where it can. Where we live, our sense of purpose, our social networks, culture, environment, access to food and good education, our sense of self efficacy all play a role in our physical health and mental well-being.

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We have been using the concept of ‘Sharing’ to build Sheffield Flourish. A digital well-being hub which helps people connect with others and the resources they need to (re)build the lives they wish to lead.  Over 180 people helped shape it before we launched it in the summer of 2016. Since then the site has had over 4,000 users. More than 40 volunteers are helping to shape, edit, create content and support others to go online. We have received over £50,000 worth of in-kind support from partner organisations. People have shared their time, talents, food, venues, compassion for others and stories. The feedback has been incredible including the results of our first insight panel interviews which show that 100% feel that Sheffield Flourish has helped improve their confidence and self esteem. This is surely added value!

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So to simplify what is admittedly a complex message, I believe to create a responsive and resilient health and care system (and society) fit for the 21sr century we have to move beyond the money game and build ‘Sharing Economies’, locally this means building #ShaRingSheffield

The good news is that we are not working from a blank page. In Sheffield there is an abundance of people and activities who are already part of this movement. I hope that I have given some insights into the added value of this approach to how we are currently planning future health and care services.

And so for the small public commitment…well I’m pleased to say that the Director of Public Health, Sheffield City Council Chief Commissioner and Chair of the CCG all agreed to meet up with a group of community health activists to discuss taking forward the above three top ideas and I think there was a spark of interest in the idea of moving from Shaping Sheffield to ShaRing Sheffield!

2017 is going to be a year of change. Collectively, we have all the resources we need to imagine and build a better future.

To all those who care and share I wish a Happy New Year!

 

 

 

 

 

Patient-Driven Digital Prescription

The following post is an adaption of a presentation given at the International Technology Enabled Care Conference 2016. The conference was hosted by the TSA and explored connected care, homes and communities. A white paper was launched at the conference by by Paul Burstow which stated;

‘Service users, patients and carers need to be involved in the choices being made about their technology-enabled service’

This post explores what that relationship could look like and the potential we could be releasing if we change the current reality of ‘patients’ or citizens being the most under-valued resource in health and care?

The traditional paternalistic relationship between citizens and healthcare is changing and there is a lot of talk about patients taking control. This post flips the idea of prescriptions which are usually a mechanism for an expert to authorise medical treatment to one which can be uses to share ideas for changing the power balance to one where patients are recognised as partners, experts and leaders in health and care.

This post uses real examples to explore the idea that when health and care  digital technology is at its best patients/citizens are not the problem they are part of co-creating the solution

What are we trying to achieve together?

One of the most important elements of co-creation is to start with shared purpose and understanding.

When considering using digital technology as it is important to remember that it is an enabler, the means not the end and that the end is to improve health and well-being.

What does good health and well-being look like? This aboriginal definition is a good place to start…

‘…. It is not just the physical well-being of an individual but also 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….’

This definition recognises the value of physical, social, emotional and cultural well-being and that the wellbeing of people and communities are intrinsically linked. Being connected matters.

Shelter, warmth, food, income, sense of self-worth and self-efficacy and belonging, knowledge, social networks, close supportive relationships all fundamentally affect our ability to self manage our conditions and health and well-being. Maslows Hierarchy of Need,Salutogenesis, the Flourish theory, Five Ways to Well-being,Social Determinants of Health, Fair Society Healthy Lives, all provide evidence based theoretical lenses through which we can understand why it is so important to consider a person’s whole life when seeking to improve health and well-being outcome.

Patients are more than their condition/s

I am a mother of two children, I live in Sheffield and I enjoy the outdoors and photography. I have an MBA and I am a Managing Director of Recovery Enterprises and We Love Life and a Non-Executive Director of Patient Opinion – all three are Sheffield based enterprises involved in people driven digital.

I purposefully put time and energy offline and online into contributing voluntarily as an active citizen to improving health care and sit on the national type 1 diabetes research programme Dafne Plus.

I am also one of 400,000 people in this country who lives with type 1 diabetes arguably up there as one of the most complex long term conditions to self manage as a patient.

The reason I am explaining the different parts of my life to you is to highlight that every patient has a life beyond their condition/s including a unique set of talents, insights and ideas.

It is important to understand that one size does not fit all and secondly to realise that patients bring with them a whole set of resources which could be unleashed and help to improve health and well-being through technology.

Choice and Sense of Control Helps Self Management

Technology has made an enormous difference to my ability to self manage my type 1 diabetes.

I see the Specialist Diabetes Consultant once a year for 10 mins and when I am struggling I can seek help from the Diabetes Specialist Nurse. I order my repeat prescriptions of insulin and test strips online through my GP and the rest of the time I am currently ‘self managing’ my diabetes with very little contact with the NHS, 24 hours a day, 7 days a week, 52 weeks a year. An endurance test with no holidays.

I inject insulin at least 5 times a day and test between 5-10 times depending on what I am doing, e.g. if I will test more if I am driving a car, exercising, speaking at big events. I try to record as much as possible to spot and respond to any patterns.  This has become much easier since getting a Freestyle Libre (a blood glucose monitoring system with sensor) and signing up to Diasend – two helpful digital health innovations which connect to help me and health care professionals work together to improve my self management.

Each time I eat I calculate the carbohydrate portion of the food I am eating. As you can imagine this is not always easy given not everything I eat comes in a neat package with labelling. However, there are many digital apps which help, I use Carbs and Cals and Cook and Count.

I also use Fitbit to motivate myself to improve my exercise and sleeping habits with varying degrees  of success!

All of these things are useful tools in my kit but what also affects my ability to self-manage and to use all these tools well is my mental, social and emotional well-being. Digital health is also helping me with this aspect of my well-being.

I am able to connect with my peers, my family, friends and colleagues through social media and online forums and I can find out information about almost anything affecting my life at the touch of a button or the swipe of a screen whether this be ‘what to do when I leave my insulin on a train when I am far away from home’ or applying for a job or looking for a place to live

I also use social media to connect with others and share insights and ideas about healthcare particularly blogging and tweeting. I have used social media and tools like Patient Opinion to feedback my experiences of services. This helps me to feel useful, purposeful and valued.

Online peer support through social media has made a big difference to me. Before I engaged with this community I had met less than a handful of people living with type 1 diabetes. I remember when I was trying to make an informed decision about whether or not to have children, I got the science stuff from the diabetes consultant, read the NICE guidance but it wasn’t enough so I searched everywhere for other people’s experience and found one relevant blog. I read that blog so many times. It really helped me to think through the issues before I made the right decision for me. There is nothing that can replace the authentic and empathetic understanding that peers are able to bring.

Having access to data and information, being able to make choices, feeling a sense of control over my own destiny and being an active part of a community are all fundamental to my ability to co-create and self manage my own health and well-being.

Patients as Partners, Leaders, Experts

In the community of people living with type 1 diabetes, there are many inspiring and intelligent patient leaders who are using all their talents, insights and ideas to improve the lives of others through technology; Nightscout, T1Resources, MySugr, MumoActive, InputDiabetes to name some of the resources which have been developed by people living with T1 Diabetes.

Patients have ‘skin in the game’ and this means not only that do they have a unique expertise to offer, a deep level understanding of what they need but also are very motivated to make a difference.

This obviously applies beyond type 1 diabetes, check out Molly Watt Ltd, I-Ostom, The Pain Toolkit, IBD Relief and #BDPChat on twitter. In fact there is a whole platform designed for promoting patient driven ideas called Patient Innovation.

There is also the ‘People Driven Digital’ movement spearheaded by Mhabitat which produced a white paper last year. Look out for more from them under the hashtag #PDDigital16 and check out the PDDigital16 Festival blog post.

Sheffield Flourish

Recognising the value of patients as partners, leaders, experts was one of the drivers for Sheffield Flourish. I have been privileged to be involved in co-desiging this digital well-being hub which aims to help people living with mental health conditions to find the connections and resources they need to build the lives they wish to lead. We take a blended real life and online approach.

  • Sheffield Flourish is co-created by the community it is designed to serve.
  • We work to tackle digital inclusion so we do not compound inequality.
  • Our content is aspirational and hopeful but does not disguise the real challenges and difficulties of living with mental health conditions.
  • We work together in partnership with others who share our values and purposes and work to make the most of the assets and strengths of our city and community.
  • The process of engagement is core to our whole approach and we actively seek to reach people and communities often excluded from services and digital resources.

We started with the question what do you need to live well?

People did not mention medication, self-trackers, telehealth/care or online patient records.

People talked about:

  • feeling a sense of purpose which included employment or volunteering
  • feeling in control and valued which included involvement in the improvement of services,
  • social networks and peer support
  • ‘dreaming and making’ which was the biggest area and included a whole range of activities from dog walking to reading/watching and listening to inspiring stories.

We also realised early on that as well as not being able to find and access online resources people had the same problem with offline resources in our city. They didn’t know about Tinder Foundation Learn my way or the computer course in Heeley or the Oasis gardening project in Fulwood or Couch to 5k on NHS Choices or the Zero Budget film competition in Burngreave or Ted Talks.

So people shaped the functionality of Sheffield Flourish right from the beginning. The Beta was launched in late July and currently includes stories and peers support, enterprise and activism, social networking and activities and events in our city.

Before we launched over 180 people had been involved in shaping Sheffield Flourish, already we have over 1,700 users – we were aiming for 300 by the end of Sept!

We also have over 40 talented volunteers from a diverse range of backgrounds all with lived experience of mental health in roles including steering group members, creative content producers, editing panel members and digital ambassadors.    

 

Already we are beginning to get feedback on the impact of Sheffield Flourish as health care professionals begin to refer people to our site, local community organisations report new participants in their activities, and people talk about the value of contributing and feeling part of a community.

We even had a complement from as far away as Adelaide who are considering building their own flourish community!

The Prescription

Co-creation has a positive impact on health and well-being at every level. Actually there has been quite a bit of evidence building around related approaches over the last few years 

Here is my prescription principles for patient driven digital!

  1. Start with shared purpose and understanding and the question ‘what matters to you’
  2. Understand the holistic and community context in which people live.
  3. Recognise that every person is unique and so much more than their condition
  4. Build choice, information and sense of self efficacy
  5. Know that patients have skin in the game which often gives them expertise and motivation to improve lives

Patients  are so more than their condition, that there is great value in recognising them as partners, leaders and experts and that the best technology solutions will be those that are co-created with patients.

If we are going to develop 21st century technology, lets also use 21st century approaches. Paternalism is history, co-creation and patient-driven digital technology is the future!

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Roz Davies 

Follow me on twitter at @roz_davies

Care Centred Communities

‘It is her (Jo Cox) commitment to finding what unites people rather than what divides them that should be basis for recovery’ Anne Perkins, The Guardian, 24 June 2016

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The following post is based on a keynote speech called ‘Putting the We into Well-being’ which I gave at the Chief Allied Health Professional Officers Annual Conference on 23 June 2016.

Please do read the call to action at the end of the Post and Contribute to the Allied Health Professional Mandate for Change especially if you are a patient, carer or citizen who believes in the ideas around ‘Care Centred Communities’.

This post is about collective leadership around common purpose and how it could co-create healthier and happier communities.

There are many ideas, experiences and approaches, some tried and tested, some evolving into new forms, which fit within the frame of  ‘Care Centred Communities’: a 21st century model of care viewed through the patient, citizen and community lens not the system lens. The principles of Care Centred Communities could be implemented at any level, whether it be in the waiting room, the ward, the vanguard or the STP! Commissioner, provider, frontline worker or strategic decision maker, all could apply these principles.

Some of this is not new and some is unashamedly borrowed from across the globe. A good place to start is in Australia with the Aboriginal definition of health. This beautifully encapsulates the essence of ‘Care Centred Communities’ and seems to connect with Allied Health Professionals reach and common purpose.

Definition of health:

‘…. It is not just the physical well-being of an individual but also 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….’

(HT Dr Tim Senior an Australian GP)

There are three important points about this definition which may resonate with Allied Health Professionals and others

  • It recognises the value of physical, social, emotional and cultural well-being
  • It recognises that the wellbeing of people and communities are intrinsically linked
  • It recognises that health and well-being is not simply the absence of disease or long-term condition

There is a wealth of existing examples, research and resources. From my own previous work and experience I have identified three key components of ‘Care Centred Communities’ which enable us to move from ‘I’ to ‘We’.

Patients as Partners

The first is working with Patients as Partners. This means moving from the traditional paternistic “fix me” approach towards the idea of co-production (check out ‘No more throw away people’ by Edgar Kahn if you want to learn more)

Dr Michael Barry and Susan Edgman-Levitan moved away from ‘What is the matter with you’ and coined  the phrase ‘What matters to you’ in the context of a useful tool called ‘Shared Decision Making’. This ethos can be applied at an individual level and a broader strategic level.

We recently hosted a gathering which recently took place in Sheffield called ‘Patients as Partners which we co-hosted with NHS Confed and SHSC NHS Foundation Trust. It involved 60 system and patient leaders listening to the insights of 5 extraordinary patient leaders and was followed by  reflective group conversations designed to draw out  a set of key conditions for working in partnership with patients.

Here are 10 key learning points:

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  1. We need to understand that patients are people and to work in partnership we need to remember our shared humanity and build authentic relationships of trust and respect and we need to listen not with intent to reply but with intent to understand. N.B. Remuneration is a contentious issue and is intrinsically linked to power, relationships and value but should not be swept under the carpet.
  2. Patients like David Coyle who has recently recovered from a kidney transplant, Kate Allatt who is up and running again after surviving a stroke and locked-in syndrome and the well-known Ally Cameron who lives with post traumatic stress disorder show us what courageous leadership really means and that needs to be reflected in health professional leadership too.
  3. Valuing diversity in many ways from accepting difference of perspective and opinion to finding ways to lift barriers e.g. language, confidence, childcare, income, physical and mental disabilities for people who may not be able/willing to engage in the usual activities.
  4. Involving people as early as possible and also remember that building relationships can take time.
  5. Providing appropriate training and support is very important. Co-ordination, administration and senior level support are helpful enablers.
  6. It is important to recognise the sources and locus of power and the need to change this for authentic partnership. Ask yourselves, what is the impact of the language, labels and identities we are using? Culture needs exploring, understanding and challenging – one frame to do this with could be Edgar Schiens ‘organisational culture layers’.
  7. Timely and accessible information is key and includes completing the feedback loop
  8. STP, Vanguards, Testbeds, CCG’s, PAM’s to name but a few – the NHS has several languages of its own which can make it very difficult to have a conversation. (Do check out this NHS Acronym Buster)
  9. Helpful to identify who already has the relationships with the people you wish to connect with and work with them. This could be individual active citizens and community leaders or voluntary sector organisations but beware the gatekeepers.
  10. Recognise we are rarely working from a blank page. Utilise and take into consideration previous experience whilst understanding the current context and future proofing where possible.

Unleashing the Potential of our Community Assets

In the work I have been involved in, particularly lately at Recovery Enterprises I am constantly amazed by what people will give to help others. One approach worth exploring is asset based community development. You might want to read international ABCD expert Cormac Russell very challenging blogs!

Drawing on community development and strength based approaches and my experience of applying these approaches here are 10 learning points to share with you.

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  1. Find your community connectors offline and online. The people who are well connected and respected in their community and who are interested in getting involved in positive change. Once you have engaged with connectors support them to connect and gather people together.
  2. Discover what people feel passionate about changing – build shared purpose. It doesn’t work if you impose system led purpose that doesn’t resonate with communities
  3. It can be an enlightening experience to explore what you already have in your place and people that might be able to contribute to making that change, could be a talented person, a venue, equipment.
  4. Bring people together and create the conditions where they can build relationships of shared understanding and enable people to contribute what they have.
  5. The recognition that everyone has talents, skills, insights and ideas and taking time to understand and lift barriers to inclusion is an important element of unleashing potential in communities.
  6. This type of approach cannot be led by the system, or those in public service but it can be facilitated and supported, e.g. SHSC help Recovery Enterprises by providing a small piece of land and an office but don’t have any direct decision making power on the board.
  7. Small sparks grants can sometimes help to lift barriers & enable community led activities to happen.
  8. Never be afraid to ask for help – I wonder what would happen if the NHS asked the public for help?
  9. People are far more likely to engage if the activity is fun and social and why not?
  10. Small is beautiful is a controversial concept in the NHS. I always get asked the question so how can we scale this up? Whilst I believe we can inspire and share insights and experience across communities I think much of this type of activity needs to be homegrown, the process of development is often as important as the end product and that is because we connect as human beings with unique feelings, ambitions, experiences, talents and ideas.

The third and final element is digital as an enabler.

On a personal level digital technology has enabled me to access better information, connect with and receive support from my peers, constantly measure my sugar level and ultimately better self manage my type 1 diabetes. Social media has also given me the route to connect with healthcare professionals, policy makers and people all over the world with an interest in type 1 diabetes.

Sheffield Flourish is a co-created local digital well-being hub designed to help people living with mental health conditions to find the resource and connections they need to build the lives they wish to lead. It includes story telling, learning, exploring, social connections, health lifestyles and enterprise development. We hope it will faciliate the collective leadership and activism needed to build a mental health friendly care centred city in Sheffield. We have used all three of these elements – working in partnership with patients, unleashing the potential of our people and place and using digital as an enabler.

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  1. We have learnt that it is important to start with what matters to people. With Sheffield Flourish we started with ‘What do you need to live well’.
  2. There is an issue around the approaches and drivers used to develop technology and how when patients are not involved in design and development the result can be a product patients don’t like, don’t want or don’t trust, e.g. there are at least 1,100 diabetes related apps and 14 app publishers have 65% of the market!
  3. There are many barriers and challenges for patients in accessing digital resources. In the UK over 12 million people lack basic online skills and 5.9 million adults have never used the internet. These are likely to be the same people who are most likely to live with long term conditions and use health services. If we are using digital we have a shared responsibility to work towards ensuring that we don’t compound inequalities. We are training digital ambassadors to go out into communities to help people go online and use Sheffield Flourish and there is the national NHS Widening Digital Participation delivered by Tinder Foundation.
  4. It seems obvious but user experience is key in digital and testing early and iteratively with the people who will be using it saves time, money and builds a better product. Check out Mhabitat design approach for a good example.
  5. It is really important for patients and health professionals to understand what they are signing up to when using digital. Read the terms and conditions and understand the business model of the digital resource – nothing in life is free!
  6. As you are all probably aware, there is a downside to digital resources, e.g. mis-information, overwhelming sheer mass of information, stress of being available 24 hours a day, trolls, scams to get your money and so on. It is important to create the conditions where people feel empowered to make good judgements and to be safe online.
  7. The power of social media can be incredible, changing lives at scale in positive and negative ways. It has certainly had an impact on my own self management enabling me to access my peers and others interested in type 1 diabetes.
  8. I believe that digital should only ever be used to enhance real life. We are taking a blended offline online approach with Sheffield Flourish using digital to connect people to the real life people and activities in their city.
  9. Digital is here to stay & scope is vast from robots helping people to live independently in their home to smart digital pills, the future is here but just not evenly distributed!
  10. …But it’s not a silver bullet. It is always just a means to an end, an enabler, part of the solution.

Allied Health Professionals and patients, carers and citizens working together in partnership to build care centred communities could be a very powerful force indeed!

 

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POSTSCRIPT

1. A CALL TO ACTION:

Spending time with Allied Health Professionals gave me an insight into a group of 12 professionals who are beginning to form a shared voice. Their roles stretch across community and organisational boundaries and they help us (re) build the lives we wish to live at many points in our lives, from paramedics at crisis points to physios helping us to get ‘up and running’ again. As I listened to their emerging mandate and listened to different conversations at the Chief Allied Health Professional Officers Annual event it occurred to me that there was possibly common purpose with the ‘Patients as Partners’ and Community Development movement/s. Have a look at this summary of the emerging mandate, it is simplified but you can see that they are not only interested in self-care and independence for individuals but also to the health and well-being of communities. I wonder if the two forces joined up, how powerful would they be in driving positive change at a local and national level? I hope we can at least build more bridges across the two networks.

With this in mind Suzanne Rastrick (NHS England Chief Allied Health Professional Officer) has invited patients and citizens to share their insights and contribute to the developing mandate:

‘We are committed to working in partnership with patients and citizens in communities to make the most of their valuable insights and ideas and are, therefore, particularly keen to hear from service users/patients, carers and the wider public’. Their direct experience of services delivered by AHP’s means they have unique insight in to what works and this can be used to improve services. We believe this is an essential part of making health and care services better for everyone.’

Please do read the invitation and have your say. It is a genuine opportunity for patients, carers, and citizens to influence the future of a significant amount of the formal health care system workforce at the beginning of a new era for Allied Health Professionals. Alternatively you can go straight to the Mandate for Change and share your insights here.

2.A THANK YOU:

The day after the event we all woke up to the shock results of the referendum. I have spent my whole working life focused on social justice and social inclusion and strongly believe in tolerance, the value of diversity and caring for each other. It makes me sad to witness such a divided society on so many levels. Serendipity had it that I had arranged to visit the Bromley by Bow Centre on the 24 June kindly invited by their CE Rob Trimble. It felt like I had entered an oasis as I walked through the archway into a courtyard of a water fountain, carved stone work and a friendly atmosphere. In this wonderful space was a GP Practice, an online centre, creative workshops for people with learning disabilities, Macmillan project, a playground, gardens, cafe, welfare rights, apprenticeships and so much more, all thoughtfully developed over time. A place which felt friendly and welcoming to all, where receptionists are replaced by ‘Patient Assistants’ and ‘Hosts and Animators’ and where the link between individual and community well-being is truly understood. Bromley by Bow Centre is an amazing example of Care Centred Communities where people come together to support each other.It was a refreshing and inspiring tonic for the post Referendum blues! Thank you Rob, what an amazing place and community you have all built together.

 

 

 

Valuing Patients in Digital Health!

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The following post is a slightly adapted version of a presentation given at the Royal Society for Medicine ‘Recent Developments in Digital Health’ event on 25 February 2016.

The purpose of the presentation was to explore digital health is at its best; when patients are not the problem but part of co-creating the solution.

The full set of slides are available here Digital Health You can also find out more about the whole event by searching the hashtag #rsmrdh16 on twitter.

Hello my name is Roz. I believe ‘patients’ are the most under-valued resource in healthcare. Using my own personal story and findings of my work with people living with long term physical and mental health conditions including co-creating a digital well-being hub called Sheffield Flourish. I hope to convince you that when digital health is at its best patients/people are not the problem they are part of co-creating the solution.

I am a mother of two children, I live in Sheffield and I enjoy the outdoors and photography. I have an MBA and I am a Managing Director of Recovery Enterprises, a social enterprise which supports people living with mental health conditions to discover and make the most of their own talents and ideas as part of their recovery journey. I run my own business We Love Life which delivers a range of projects exploring the combined potential of community and digital to improve lives. I have also recently become a Non-Executive Director for Patient Opinion – yet another Sheffield based digital health social enterprise.

I also am one of 400,000 people in this country who lives with type 1 diabetes and I purposefully put time and energy offline and online into contributing voluntarily as an active citizen to improving health care.

The reason I am explaining the different parts of my life to you is to highlight that every patient has a life beyond their condition/s including a unique set of talents, insights and ideas. This is relevant to today for two reasons – it is important to understand that one size does not fit all and secondly to realise that patients bring with them a whole set of resources which could contribute to improving healthcare.

I inject insulin at least 5 times a day and test between 5-10 times depending on what I am doing, e.g. if I will test more if I am driving a car, exercising, speaking at big events. I try to record as much as possible to spot and respond to any patterns.  This has become much easier since getting a Freestyle Libre and signing up to Diasend – two helpful digital health innovations.

Each time I eat I calculate the carbohydrate portion of the food I am eating. As you can imagine this is not always easy given not everything I eat comes in a neat package with labelling. However, there are many digital apps which help, I use Carbs and Cals and Cook and Count. I also find it helpful when restaurants publish the carb values of their menus online.

I see the Specialist Diabetes Consultant once a year for 10 mins and when I am struggling I can seek help from the Diabetes Specialist Nurse. They now use Diasend to help with the consultation. I order my repeat prescriptions of insulin and test strips online through my GP and the rest of the time I am currently ‘self managing’ my diabetes with very little contact with the NHS, 24 hours a day, 7 days a week, 52 weeks a  An endurance test with no holidays.

I also use Fitbit to motivate myself to improve my exercise and sleeping habits with varying degrees of success!

All of these things are useful tools in my kit but what really affects my ability to self-manage and to use all these tools well is my physiological, mental, social and emotional well-being.

Shelter, warmth, food, income, sense of self-worth and self-efficacy and belonging, knowledge, social networks, close supportive relationships all fundamentally affect my ability to self manage my condition. Maslows Hierarchy of Need, Salutogenesis, the Flourish theory, Five Ways to Well-being, Social Determinants of Health, Fair Society Healthy Lives, all provide evidence based theoretical lenses through which we can understand why it is so important to consider a person’s whole life when seeking to improve self management, health and well-being outcomes

So how does digital help with the social determinants of health?

Being online in the first place means I am £1,000 a year better off!

I am able to connect with my peers, my family, friends and colleagues through social media and online forums and I can find out information about almost anything affecting my life at the touch of a button or the swipe of a screen whether this be ‘what to do when I leave my insulin on a train when I am far away from home’ or applying for a job or looking for a place to live

I also use social media to connect with others and share insights and ideas about healthcare particularly blogging and tweeting. I have used social media and tools like Patient Opinion to feedback my experiences of services. This helps me to feel useful, purposeful and valued.

Online peer support through social media has made a big difference to me. Before I engaged with this community I had met less than a handful of people living with type 1 diabetes. I remember when I was trying to make an informed decision about whether or not to have children, I got the science stuff from the consultant, read the NICE guidance but it wasn’t enough so I searched everywhere for other people’s experience and found one relevant blog. I read that blog so many times. It really helped me to think through the issues before I made the right decision for me. There is nothing that can replace the authentic and empathetic understanding that peers are able to bring.

I am personally a huge advocate for using digital resources as an enabler to achieve better self-management and well-being but through both my own experience and through my work at Recovery Enterprises and We Love Life I have also learnt about the challenges and barriers to getting the best out of digital resources to help people to self-manage and live well.

Many digital health resources are trying to solve the wrong problem and have been developed primarily with power and profit intentions. Patients often don’t want, don’t like or don’t trust them. There are 1,100 apps for people with diabetes – most are single focused and hard work, boring and non-intuitive to use. 14 app publishers have 65% of the market share.

One of the key findings in the work we did for Sheffield Flourish to explore what gets in the way of people using digital resources as part of recovery was that there is so much out there it is difficult to make sense of the choices and has become overwhelming for many. Even when people find the tools they don’t know how to judge what is good quality and safe and which one could be most useful for them.  Many people worry about privacy, security and big brother.

One clinician interviewee for my MBA dissertation (which was on how digital health start ups engage with the NHS) talked about the digital health market being like the ‘wild west’. How do people – patients and clinicians make decisions about which digital resources to use? Is it down to great marketing or the greatest impact?

The business models for digital health is challenging in a country where we are not used to paying for healthcare at the point of contact and in a market which is dominated by the NHS with its complicated web of organisations, culture, values and interests. A year’s supply of Freestyle Libre cost £1,434.85 – I had to buy my own – not everyone has this choice. This creates an inequality gap and asks difficult philosophical and political questions.

During our research for Sheffield Flourish and in other work I have been involved in digital inclusion and digital literacy in both patients and health care professionals has been raised as an issue. 12.6 million people lack basic digital skills These people are more likely to be on low incomes, elderly and uneducated and there is a cross over with the people most likely to be living with long term conditions. If we are going to get the best out of digital health resources we will need to address these issues.

Martha Lane Fox wrote in her recent recommendations to the NHS: ‘It is critical that NHS front line staff have the confidence and skills to introduce people to new digital services and tools, motivate them to use them and support them to do so’.

The only time I have ever been directed to use digital resources by a health care professional was by a GP who referred me without any support or direction to the Sheffield Aches and Pains website so I could self assess and manage my chronic back pain.

Other access and engagement barriers such as language and culture are also prevalent across generic non-specific digital resources.

How do we overcome these challenges? Here are some emerging ideas from our work co- creating Sheffield Flourish

SF1.jpgSheffield Flourish seeks to address many of these issues by ensuring one magic catalytic ingredient is added into the recipe for developing digital resources; people and community building.

Sheffield Flourish arose from discussions across the recovery enterprises community about the need to have a ‘well-being’ hub for people to connect, share and grow in many different ways as part of their recovery. Human Studio, a globally successful digital design agency and the University of Sheffield joined in and the conversation steered towards the idea of a virtual hub designed to support and enhance real life activities across Sheffield.

Our key principles are that Sheffield Flourish is co-created by the community it is designed to serve. That digital is an enabler to real life not the end itself. That we will tackle digital inclusion so we do not compound inequality. That what we produce together will be beautiful, aspirational but will not disguise the real challenges and difficulties of living with mental health conditions. That we will work together in partnership with others who share our values and purposes and work to make the most of the assets and strengths of our city and community. The process of engagement is core to our whole approach and we will seek to reach people and communities often excluded from services and digital resources.

We started with people talking about what they need to live well. People did not mention medication, self-trackers, telehealth/care or online patient records. People talked about feeling a sense of purpose which included employment or volunteering, feeling in control and valued which included involvement in the improvement of services, social networks and peer support, therapy and ‘dreaming and making’ which was the biggest area and included a whole range of activities from dog walking to reading/watching and listening to inspiring stories. We also realised that as well as not being able to find and access online resources people had the same problem with offline resources in our city. They didn’t know about Tinder Foundation Learn my way or the computer course in Heeley or the Oasis gardening project in Fulwood or Couch to 5k or the Zero Budget film competition in Burngreave or Ted Talks.

So people shaped the functionality plans for Sheffield Flourish right from the beginning.

We set up a steering group to guide and closely steer the developments which is made up of a majority of people living with mental health conditions with a diverse range of backgrounds and digital literacy. Each member brings a unique set of resources and insights with them in addition to their experience of living with mental health conditions from marketing to story-telling to education and training to social media. They are an amazing group of people to work alongside. Already they have tested the brief against user personas and worked with Human to agree the holding page and designs and begun to champion and spread the word about Sheffield Flourish. We already have over 100 of people signed up to our holding page with very little promotion. 25% of these people have completed a detailed user feedback questionnaire.

We have also recently recruited a team of talented volunteer Creative Content Producers who will go out into their communities and find inspiring stories of people’s experience of living with mental health and of formal and informal activities which are happening in our city which might help people with their recovery. This process is already beginning to build the connections and community fabric which will make Sheffield Flourish a success.

Next we are going to be recruiting and training a team of Sheffield Flourish Ambassadors who will go out into wards, waiting rooms and community venues to help people (including health care professionals) to go online and use Sheffield Flourish and other supporting digital resources.

We are also working on a number of related projects which will result in content for the site including pilot led by people with mental health conditions developing online training around self-compassion primarily for NHS staff!

We are due to launch Sheffield Flourish publically in early Summer with a number of taster stories emerging between now and then!

I hope that what has emerged from my presentation are the following three key messages:

  1. Start with what people need to live well/self-manage
  2. Digital is a means not the end
  3. Co-creating digital health is key to success

Finally the most important thing I have learnt which I would like to leave you with is that when people are valued amazing things happen!

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Would love to hear more about other digital health resources which have been genuinely co-created with patients/people! Please do share!

Here are a few great relevant innovations, organisations and people….

 

 

 

 

#TalkT1: The Glass is Half Full!

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…… but we have work to do!

I’m on the way home from an incredible 36 hours with some of the country’s finest ‘experts’ on type 1 diabetes, the condition I have lived with for 18 years.

Dr Partha Kar who (if you don’t already know) is a diabetes consultant based in Portsmouth took it upon himself with some help from his local team and other like-minded enterprising folk to gather the troops to see if they could connect and build a new model of care for type 1 diabetes.

The group was around 50 strong, bringing with them a vast array of expertise including commissioning, clinical, lived experience of type 1 diabetes, policy making and technology. They also brought with them shared purpose, to an extent shared values and a sense of responsibility to tackle the complex challenge of improving the lives and prospects for people, who like me, live with type 1 diabetes.

The process was; learn about the context, socialise and build relationships, breakout into smaller groups, build new models of care together, present to the room including ‘the judges’  and decide together a winning model.

Partha designed it in such a way that it was engaging and fun but at the same time there were no holes barred on how serious an issue we were dealing with. As a mother of two young children there was one particular fact that stood out for me shared with us by Dr Pratik Choudhary:

‘Current practice kills at least 30% more people by the age of 50 than best practice should achieve’

There are currently around 400,000 people who live with type 1 diabetes in the UK. The complications caused by type 1 diabetes are serious and costly to lives and the NHS for example stroke, neuropathy, retinopathy and kidney failure.

One of the most important facts for any professional or family member caring for or people living with type 1 diabetes is that the risk of these complications is significantly reduced by good self-management from the start. This is the case for the general population too but the risks are hugely magnified in the context of type 1 diabetes and speeded up.

The overall headline message from the event for me was that the current situation and outcomes are dire. Variation and lack of understanding of both patients and clinicians across the country is the biggest challenge but that we have everything we need to transform that position. The glass is indeed half full!

We listened to stories of vanguards, NICE Guidance, current outcomes, the acute and primary care perspective services for children and young people, adults and the thorny issues of transition. We heard from Diabetes UK and four very different stories from Laura, Mike, Jens and ‘Diabetes Dad’ Kevin  with some strikingly similar issues highlighted. Finally we had some challenging calls to action from the ‘legends’, Simon Heller and Fiona Campbell.

The take home messages for me were:

  • The financial system is causing blockages to the development and delivery of the best, most impactful and efficient care.
  • There is a widespread lack of understanding of type 1 diabetes across health care professionals and others including commissioners, policy makers, generalists, specialists and patients let alone in the general population.
  • Emotional and mental health support is almost non existent yet it is widely acknowledged as key to self management
  • Type 1 diabetes is (arguably) one of the most complex and enduring conditions for people to self manage
  • People living with type 1 diabetes spend relatively little time in close contact with the NHS until complications arise and then are mostly in contact with non diabetes specialist health care professionals.
  • The social determinants of health have a huge impact on a persons motivation and ability to self manage, e.g. if someone is feeling isolated, has very little income, no job etc how can they prioritise and focus on their type 1 diabetes? Maslow’s hierarchy of need provides a framework for understanding this important context.
  • Engaging some people in understanding and self managing their type 1 diabetes seemed to be one of the most difficult challenges to tackle but I am pleased to report I never once heard the phrases; ‘hard to reach’, ‘adherence’, ‘non-compliance’ or ‘did not attend’. There was talk of how rigid and inflexible the current offer can be in places and of the impact of the social determinants of health on a patient’s capacity to engage.
  • We need to understand and unlock the full breadth of assets available to improve the lives of people living with type 1 diabetes including the community and voluntary sector, digital, primary care and the 400,000 community of people who live with type 1 diabetes themselves
  • Transition across services provided for children and young people and those provided for adults is currently an issue. The services are currently completely different and causing negative disruption for young people.
  • Structured education is widely thought to be one of the key basic elements of creating the conditions where people feel empowered to self manage type 1 diabetes and in recent years the availability has grown. However, there are still two key issues, firstly the uptake of the education and secondly the ‘melting effect’ of the education. Issues discussed related to the format and timing, lack of understanding of the importance of the course by patients and clinicians and when education is offered. (It took seven years for me to get the right education to self manage diabetes by which time much long term damage can already be done ).
  • There are plenty of examples both in this country and further afield of approaches which work and have been shown to make a difference but the well known issue of diffusion of innovation across the NHS is proving a stumbling block and as mentioned earlier is creating a huge and unacceptable variation in outcomes.
  • To create the conditions where people feel empowered to self manage type 1 diabetes or any other condition, they/we need to be motivated, feel confident, have the right knowledge, skills and tools and be connected to a network of supporting people, resources and services.  This is not all in the domain or gift of health care professionals or the NHS but cannot be ignored when the goal is to improve outcomes.

 

So despite all these complex system and human challenges, optimism remained high and the whole group stayed focused and determined to find practical realistic solutions.

Four different new models of care were produced and presented at the end of the session. Two things struck me at this stage. Firstly, that all the models were (to varying degrees) trying to make the best of both specialists and generalists and primary, community and secondary care and of ‘specialist generalists’. Secondly, that no model was particularly expensive although would require some shifting across the system and genuine integration and partnership working. Every option began to recognise people as assets, for example there were a few mentions of ‘peer support’ and even the voluntary and community sector!  All brought blended real world and digital approaches recognising that access to electronic health records for clinicians and patients is key, that virtual and telephone consultations have to be key and that stratifying risk using ideas like patient activation measures and care planning traffic light tools would help to flex and stretch the services. There was a real shift towards building genuine people driven support and above all finding ways to increase access and uptake of education for people living with type 1 diabetes at the earliest but right time for them.

The models developed will be produced and shared more widely in the long term (keep an eye on Partha’s blog for updates). I heard that Samantha Jones  Director from the New Models of Care Programme and Jonathan Valabhji National Clinical Director for Diabetes asked for the write up of the models so I hope they will help this amazing group of people move this work into the next stage.

The event was recorded on twitter through the hashtag #TalkT1 and captured brilliantly in this super Storify by Laura.

I want to take this opportunity to say a heartfelt thank you to Partha and his colleagues for your leadership, energy and commitment. As you wrote in your TalkT1 post summarising the event, it really was very special.

I have more than a hunch that the inaugural #TalkT1 event marks the beginning of a renewed and collaborative energy to make a significant change in our models of care and subsequently improving the lives of people so that, for as long and so much as possible, they do not suffer but instead they live well with type 1 diabetes. That’s got to be a good thing, right!

Roz 

 

 

POSTSCRIPT

Here are a few little ideas I have been thinking about for a while which might integrate with all the models of care proposed:

  1. TRAINING FOR HCP’s: A mandatory short training programme for all health care professionals on the basics of type 1 diabetes to be delivered in partnership by specialists and people with type 1 diabetes
  2. DIGITAL: An online self care toolkit co-created and owned by people with type 1 diabetes which included; risk self assessment, self tracking of blood sugar level and other important factors e.g. physical activity, community forum, care planning and goal setting, access to wide range of digital resources, information about type 1 diabetes and related services and local activities and flexible online training and education.
  3. KIT BAG: A social enterprise owned/run by people with type 1 diabetes purely to develop an introductory Type 1 kit bag which would be given as a gift to every newly diagnosed person including beautiful and cultural/age appropriate guides, vouchers for equipment (as prescribed by clinicians but with an appropriate level of choice), vouchers for hypo treatment, cook books, gym vouchers, online code to access buddying and peer support and so on…. Like Finnish Baby Boxes this could become a public health tool but owned by the community not government.
  4. PEER SUPPORT: Every diabetes centre to have access to real world and online peer support with a range of opportunities for people with type 1 diabetes to connect, learn and share experiences, ideas and knowledge. This could include offering digital inclusion and other support in the waiting rooms, co-delivering short taster education courses in a range of community settings including schools, community centres, libraries etc. Every person living with type 1 diabetes would receive an invitation to connect with peers through a range of relevant opportunities.

 

A FEW USEFUL RESOURCES

The best explanation I have ever heard of type 1 diabetes from Shropshire Health Champions in a video for schools

David Craggs writes an insightful and well researched blog on some of the challenges around type 1 diabetes

What Professor Jane South doesn’t know about community-centred approaches to health and well-being isn’t worth knowing and she has put it all down in this report for Public Health England.

Peer Support means many different things, Nesta and National Voices explore the diversity of models in this comprehensive report

DAFNE or dose adjustment for normal eating is the most well known recognised structured education for Type 1 diabetes (it changed my life). There is a useful web resource to find out more.

Want to learn more about the in’s and out’s of living with type 1 diabetes. These Type 1 Uncut clips for young adults from Diabetes UK are on the money!

The latest NICE guidance (guidance for NHS services) for Type 1 Diabetes is generally thought to be very good although whether this is played out in reality is another matter.

If you want to learn more about how to use online resources you could do worse than having a look round Tinder Foundations ‘Learn My Way’ site including how to book online GP Appointments, ask for repeat prescriptions and see your summary health record. Also you may like to know that NHS England funds them to deliver a national NHS digital inclusion programme. 

ExCarbs is  digital resource I learnt about at TalkT1 so haven’t had a chance to use it yet but have it on good authority that it is good if you are interested in exercise and diabetes

Diasend makes sense of the data from blood glucose meters. Patients can just sign in and upload data.

MySugr is a fun suite of apps designed to help children, young people and adults self manage

Cook and Count is a great app if you like to cook from scratch and you want to know the nutrional and carb value of your meal

Elefriends is a community platform run by MIND which offers a safe place to ‘listen, share and be heard’

Few more bits and bobs here on different aspects of healthy living courtesy of NHS Choices

There are 1,100 apps for people with diabetes produced by all sorts of people and organisations for all sorts of reasons. Always read the small print especially if they are free. Be safe and healthy online!

IF YOU KNOW OF ANY MORE BRILLIANT QUALITY DIGITAL RESOURCES PLEASE DO ADD IN COMMENTS BELOW OR TWEET ME @roz_davies using hashtag #TalkT1

 

Sheffield: A city of community-led social innovation!


 

Description Photo

I landed in Sheffield after a trip round the world 12 years ago and haven’t looked back. I have never lived in one house or even one place longer than I have now lived in the ‘People’s Republic of South Yorkshire’. The last place I lived was London, before that Bristol and before that Manchester. I really enjoyed living, studying and working in the field of social, economic and environmental regeneration in these cities but for me there is something special about Sheffield.

Bound by 7 hills and rich in woodlands and green spaces, Sheffield claims the title of ‘the greenest city in Britain. In 2014 Sheffield won the BBC Countryfile Magazine Award;  ‘Outdoor city of the year’ with 71% of the votes. It has also been cited as the happiest city in the UK. 

At the same time, according to the 2015 State of the City report this city has its challenges with high youth unemployment, low numbers of start-ups, ‘below average profile’ in learning and skills, high health inequalities and air pollution.  There is hope though, with £43m being ploughed into advanced manufacturing, £40m into an Olympic legacy park and the Universities new developments including the University of Sheffield £81m Diamond building and the Sheffield Hallam University £30m Institute of Education.

But the reason I love Sheffield and where my personal and professional interests lie is in community-led social innovation. The geography and the history of Sheffield seems to have resulted in a culture of citizenship and community. The University of Sheffield was set up over a century ago by factory workers who came together donating a penny each to build a University ‘for the people’.

So what has happened around social innovation in the city in recent years?

One fantastic strategic social innovation is the Fairness Commission published in January 2013. Looking at many aspects of our lives from housing to health, it seeks to make Sheffield the fairest city in the country!

Launched in 2015, the Move More Plan explains how the Move More Sheffield network is bringing together networks, activities, champions who care about changing the culture of physical activity across our communities. As a pilot over the last year 37 community activities in 16 communities were developed by people and groups involving more than 600 people, showcasing the power and creativity of community. Linked to the offline activity is the development of an online city-wide activity finder which is designed to help people connect, find or even set up activities for themselves.

Recently also the Sheffield Social Enterprise Network has been set up recognising the breadth of social business innovation across the city from new organisations such as Strip the Willow to organisations with fantastic track records like Manor and Castle Development Trust.

We also have some very successful national social led businesses such as Patient Opinion, Tinder Foundation, and YooMee who all operate fantastic and very well used community platforms.

What really fascinates and excites me is organic messy community networks and the small community led social innovations happening across the city. I’m not sure we measure this activity well in terms of numbers or impact but it doesn’t take much digging to find it! Here are some examples:

One of the organisations I am involved with is Recovery Enterprises. It was set up in 2012 to support people in recovery to value and unleash their enterprising talents. In addition to supporting community enterprises, Recovery Enterprises has recently launched the design and build stage of a Big Lottery Funded Digital Well-being Hub ‘Sheffield Flourish’.

Sheffield Soup set up this year to ‘sociably crowd fund local people’s ideas’ which in its first session raised £540 for a local social enterprise   https://sheffieldsoup.wordpress.com/

The brand new ShipShape Sharrow Workers Co-operative which has evolved from previous organisations and works with Community Health Champions and Health Trainers transforming people’s well-being.

Storying Sheffield a virtual platform which purposefully shares the narrative of our city in the context of arts, well-being, mental health and community.

There are also many amazing individuals in this city who  put their life and soul into social innovation, developing new community groups including the wondeful Hazel and Tony Blackbourne who (amongst many other activities) have set up neighbourhood diabetes and mental health groups, Sue Sibbald a  national social media expert who founded the online #BDPChat for her community and Kate Allett who founded Fighting Strokes after an astounding recovery from stroke and locked-in syndrome

I haven’t scratched the surface with the amount of community-led social innovation going in this city.  Whether it be strategically or at a street level, digitally or in real life (or at its best both), organisation or individuals, this city is full of it!

When people and communities are connected, when they care and are cared for, when they can ask someone for help, there is increasing evidence to show that they are healthier and happier.

Community-led social innovation is developed by passionate, active citizens who join forces over shared locally relevant purpose and values, making the most of their combined ideas and resources of people and place. Without the burden of bureaucracy and the need for heavy capital investment this can be faster and more sustainable than economically led innovation. The process results in more cohesive, skilled and sustainable communities and ultimately cities.

I think that this is fundamentally why community-led social innovation is so important as a key construct of a smart city ecosystem.

What more can be done in this city to create the conditions where this incredible community-led social innovation we have bundles of in Sheffield is truly understood, valued and enhanced? Perhaps a good starting point would be to collectively and overtly recognise that it is at the very heart of this city and that it is what sets Sheffield apart from other cities.

Perhaps now is the time to start a new phase in this journey, taking full advantage of digital and technology to build the platforms and infrastructure to connect up and harness the potential of this fantastic energy and innovation we have across our city and ensure it plays a central role in the city’s future.

Is now the time for a 21st century ‘Social Sheffield’ to step forward?

‘Practice-ing’ Community-Centred Approaches!

  

There is much talk of the value of staff in the NHS working in partnership with patients, citizens and communities. It’s in NHS England’s Five Year Forward Vision and is even enshrined (to some extent) in legislation for CCGs – ‘the duty to involve’ (guidance is worth a read).

There is a wealth of evidence, theories and approaches on why and how to do this. If you wanted to read one publication, I would recommend Public Health England’s Guide to Community Centred Approaches.

However, we are a long way from Community Centred Approaches being ‘how we do things around here’ across the system and country.

Recently, I have been involved in a small informal network of general practices and their communities and partners, who have been exploring different ways to build relationships and work in partnership with patients, citizens and communities.  The people within the group are from a range of backgrounds, localities and interests and have come together organically, not driven by funding or policy but by shared values and because each individual, organisation and community has something to give and something to gain.

On 15 April, despite the usual challenges which we all face around time, costs and health, the group gathered at Dr Amir Hannan’s practice in Hyde. Health Trainers, GPs, PPG Members, NHS Managers and Commissioners, voluntary and community groups and even an actress and a policeman came together to share their experiences, problems, insights and ideas.

Amir recorded all the presentations of the day and the presenters generously consented to share this online with anyone who wishes to learn from their experiences and insights. They are all available here on the Haughton Thornley Medical Centre website. You might like their strapline in the top left corner;

‘There for all of your life, your good health with our support, empowering you to live well’

I have summarised what I learnt from each part of the day below.


Culture eats ‘Tick Box’ for Breakfast

As we walked into the Practice fresh from the other side of the Pennines, the first thing that struck me was the big call to action banner stand at the entrance inviting all who walk through the door to join others in taking a personal health pledge. This set the scene for a relationship with the NHS which encourages people to take control of their health and well-being in the context of community. Not for everyone but a symbol of ‘the way things are done around here’.

  
It is interesting to apply to this context Edgar Schein’s three levels of organisational cultures: artifacts and behaviours, espoused values and deeper shared assumptions. The banner stand offered hints of the Practice’s cultural artifacts and behaviours at the gateway to the Practice and the strapline offered an online insight into the espoused values. This entrance set the scene for the rest of the day. This Practice and the people in all their roles which connect around it have created a culture of partnerships of trust which takes activities that can easily become tick box exercises and turns them into powerful tools for positive change.


Partnerships of Trust with Patients (Patient Participation Group)

The event kicked off in the Practice’s large community meeting room with a rousing presentation from the inspirational Ingrid Bringle, who is the Chair of the Practice Patient Participation Group. Her presentation showed  how much a genuine and powerful partnership between patients and people working in Practices can achieve. Just some of their achievements include record access workshops, collections for the food banks, getting a pharmacy next door, health promotion market stalls, bringing experts into the Practice and working strategically with other partners including neighbouring PPGs. Ingrid also shared the ingredients of their success, part of which I believe is the partnership of trust and shared values between her and Amir.

Next up was another volunteer Patient Participation Group member Dominic Sexton, who shared with us their local ‘Health Pledge’ campaign inspired by the NHS Change Day campaign. The essence of this campaign is about personal goal setting in the context of community building using both their local community face-to-face activities and online resources and tools. The ‘team’ had put a great deal of energy, time and effort into building and promoting the campaign.

As well as the content of the presentations, I also really enjoyed the banter between  Amir, Ingrid and Dominic. I got the impression they knew each other well, had a great deal of respect for each other, shared similar values and purpose and had fun as well as working tirelessly to make a difference to the health and well-being of their community. Going back to Schein I think we saw the cultural layer of deep shared assumptions displayed across the team, for example valuing each other’s strengths and talents.


Story Telling                                                                                       

Amir also invited others from the community around the Practice to join in too. We heard from Christina Howard from the CVH First Class Group and Editor of their magazine. She highlighted the power of story-telling in building communities and in improving health and well-being. Barbara Hampson then told us her own fascinating story of her role (since 1967) in the National Association of Women’s Club, helping women to make friends and have a better life. Amir rightly pointed out that Barbara was an excellent role model within the community.  And later Rehana from Hyde Community Action, who described how they draw on the asset based community development approach to unleash the potential of individuals and communities to come together to improve health and well-being.

  

Patient Access to Electronic Health Records

Amir went on to deliver an inspiring presentation appropriately starting with the Nelson Mandela quote: ‘A winner is a dreamer who never gives up’ exploring the idea of a ‘partnership of trust’ with patients. 

  
He gave an excellent summary of how he is using a combination of offline and online support and resources to work in partnership with his patients and community. He explains the purpose, principles and practicalities of supporting patients to access their electronic health records. 35% of his patients are currently accessing their electronic health records. These are people from different backgrounds, different age groups and living with a range of long-term conditions. What I learnt from this presentation and the whole day was that it is the underlying purpose, values and culture that make this work in Hyde, seeking to genuinely support people to have the confidence, skills, information and connections to be able to take more control over their health and well-being. Amir rightly emphasised that digital is simply one tool, one means to the end.


Peer Support, Relationship Building and Digital Technology

Next up was Dr Farhan Amin, who, with his colleague Gareth Presch, travelled down from Cumbria. Farhan who works as a GP at Burnett Edgar Medical Centre, recognised the power of story-telling too and is using the video and digital technology to facilitate patients to share their experiences and insights of living with specific health conditions. He has developed Patient Memoirs for two main reasons: to enable patients to share experiences and insights with each other and to build more informed relationships between patients and health care professionals.

I have personal experience of benefiting from peer support and really value the empathy and understanding, real life tips on how to deal with some of the challenges of living with type 1 diabetes and as a spin off the friendships that have grown from the initial connection.  Janet Harris from Scharr at Sheffield University, who was unfortunately unable to join the group on the day, has carried out some excellent research which highlights the power of peer support in health and well-being which gives some academic backing to my anecdotal experience.


Patient Activation Measures

Dr Ollie Hart from the Sloan Medical Practice in Sheffield then shared with us his experience of using ‘Patient Activation Measures’ (PAM). He started with a very good point: as patients, we do not label ourselves as activated or not. Ollie recognised that although PAM is not a perfect model, it is one tool which, when used in the right context, culture and approach, can be part of the kit creating the conditions where people can build the confidence, knowledge and skills to better manage their own health and healthcare. Ollie is using PAM to help him and his colleagues to ‘tune into’ more customised and personalised approaches to supporting patients and ‘meet people where they are’.  It helps clinicians to work out with patients how engaged/activated people currently are in their own healthcare. Subsequently clinicians can work in partnership with patients to develop more appropriate packages of care. This prompted some interesting discussions, e.g. how motivation levels impact on the results, how this work impacts on the prioritisation of limited resources and how this approach connects with tackling the wider determinants of health and community building.


Communities Got Talent

Lyn Brandon from Sheffield City Council Public Health Team and Chris Hanson and Karen (See clip on some of Karen’s work as a Health Trainer here) from Shipshape Sharrow shared the Sheffield community well-being model, which has evolved over 20 years, and described a wealth of community activities including the introduction to community development in health course, community health champions, health trainers and social prescribing. Community organisations like Shipshape Sharrow are working in partnership with Practices to help build the confidence, knowledge, skills and connections for individuals and communities to be able to improve their health and well-being. Chris highlighted the importance of a holistic connected approach in communities and the systematic support and infrastructure across the city.  All three of the speakers talked about how this approach enabled people to travel along a pathway both towards improved self-management and getting involved in their community.


Engaging The Public and Businesses: Ambassadors

Gareth Presch, District Nursing Service Lead from Cumbria Partnership NHS Foundation Trust, brought in a strategic perspective and shared his innovative ideas for improving engagement, learning from and working in partnership with other business, universities and role models. From using social media to working with the Carlisle Business Ambassadors network, Gareth was challenging us to take a collaborative approach and to think outside the box.

  

A couple of postscript extra thoughts from me:

Digital Inclusion

Much of the discussions today blended together both face-to-face activities with digital resources. The group recognised that digital technology is an important tool in the 21st century Practice kit and that it helps in many ways, e.g. promoting activities, building understanding and connections, supporting people to take control of their health through access to electronic health records and becoming more informed about their health conditions or medication. The group is connected to Tinder Foundation’s NHS England funded widening digital participation programme. See Ollie’s experience of bringing digital inclusion into his local Practice here.  Tinder Foundation has produced an excellent infographic on the current picture of digital inclusion which explains that there are 11 million people who lack basic digital skills. 

  

Tinder Foundation also say ‘there is a huge synergy between groups that are digital excluded and those who experience health inequalities’. This means that it is important that Practices that use digital resources need also to consider supporting digital inclusion. Tinder Foundation currently offer Practices access to free online training on using GP online services such as repeat prescriptions, booking appointments and access to records. Practices can add a ‘widget’ or link to their websites directly to ‘Learn My Way’. In addition Tinder Foundation also provides access to its 5,000 strong community organisation network where people can access face-to-face support. Practice staff can find out who their local UK Online Centre is by entering their postcode on the site.

Flourish

I have been reading Martin Seligman’s ‘Flourish’, which I found via the fantastic New Zealand organisation LifeHackHQ. Martin Seligman is one of the founders of positive psychology and talks about the PERMA (Positive Emotion, Engaged, Relationships, Meaningful Achievement) approach to creating the conditions where people can flourish. You can find out more in this clip.

I wondered whether understanding this holistic approach to helping people to flourish could help to reframe the potential and purpose of the Partnerships of Trust which these Practices and their communities are building.

My takeaways:

Every person who contributed brought their own unique set of talents and resources into the room and freely shared their experiences and insights. Despite knowing that the session was being filmed and shared, it felt like a safe space where everyone was equally valued, diversity was respected and people could be open and honest. Yet at the same time, it was purposeful and useful. Each of us was also able to take away new knowledge and ideas and I think a sense of community began to emerge as new relationships were forged. I learnt that:

  • GP Practices can become focal points for community building and community centred approaches.
  • Culture matters; you can’t fake it and it manifests itself in many ways from the physical facilities to the relationship between the PPG and the Clinicians.
  • Partnerships of trust with patients, carers, citizens and communities take time and require courageous and authentic leadership, honesty, a healthy respect for diversity, and the development of shared values and purpose.
  • Flexible multiple activities not fixed singular approaches are more likely to work.
  • There is an element of risk to change but often the risk of remaining the same seems to be higher. Ollie observed the people in the room were all ‘risk takers’.
  • There is a need to accept and understand the importance of the messiness and organic nature of community centred approaches.
  • There is great value in building connections and purposeful knowledge sharing across different communities and Practices. It worked well for this group because of shared values and because each person shared their gifts, felt valued and gained new knowledge to take back to their Practice and communities.

I have a hunch that this will not be the last gathering of this group of people and I hope next time there will be others with different gifts to share!

Thank you to all the people who took a day out to share their amazing stories, insights and ideas. We are at a crossroads in healthcare and it certainly felt to me that the development of Community Centred Practices could be a very positive step forward in supporting individuals and communities to Flourish!

Roz Davies, 

We Love Life & Recovery Enterprise