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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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

Move More Sheffield: Small Sparks Investment Fund for community groups

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The Move More Sheffield Small Sparks has been created to help small groups in Sheffield get together to become more physically active in a way that people enjoy and that makes a difference to their community.

You can apply for an investment of up to £300 if you can show us that:

  •  There are at least 4 people involved in your group
  • Everyone is prepared to contribute their time, energy and talents
  • Your activity is new and your group will share how it is making a difference with Move More Sheffield.

As we are using this opportunity to demonstrate the untapped potential in our communities the funding needs to be spent by March 2015 so whilst we are not putting a deadline on applications we would encourage you to apply as soon as possible.

For more information about Move More Small Sparks see our Checklist and Application Form which you should complete and send to: info@movemoresheffield.com

 

If you have any queries please do get in touch with us at: info@movemoresheffield.com

Small Sparks Application Form Final

Small Sparks Criteria

 

Exploring the ‘We’ in Well-being!

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The Kings Fund and National Voices have recently launched an excellent helpful paper ‘People in Control of their own Health’ designed to provide a practical framework to help turn policy rhetoric into a reality.

At the launch event the following question was asked:

What one thing do you think needs to change to support people to take control of their own health?

My simple response to this question is:

To change the lens through which we view and try to improve health from ‘I’ to ‘We’

This response is based on my personal experience of living with type 1 diabetes, supported by experience of working in community development and research around citizenship, peer support and well-being.

A good starting place might be this powerful definition of health I discovered a few months ago through social media in a post written by an Australian GP and writer called Tim Senior

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

It is the Aboriginal definition of Health.

This is about having the opportunity to reach our full health potential no matter what health conditions or disease we may live with. It is also about recognising that our health depends not simply on clinical and medical care but on wider social determinants of health in particular our relationships and our community connections.

To bring this to life in our context, I have had a number of conversations with health care professionals in the last few months often in the context of diabetes around supporting self-management.

We have talked about some of the enabling resources from a more clinical perspective including training and support, equipment and digital technology, but we have also shared a belief that our relationships and networks including the very important human interaction between health care professionals and patients and our wider support network, the social capital in our lives are very important factors in our ability to take control of our health.

We know there is evidence of the impact of isolation and loneliness on our health generally. There is evidence to show that loneliness is worse for our health than smoking 15 cigarettes a day and has an impact on our immune system.

There is increasing evidence that support for self-management needs to be set in the context of social networks. A study published in June 2014 ‘Contribution of social networks to the health and self-management of patients with long term conditions’ showed that greater social involvement was significantly related to better self-management ability, better physical health or ability to cope with health conditions and greater emotional well-being.

Professor Martin Knapp and the PSSRU team at the London School of Economics has also produced a useful report and infographic on the economic case for building community capital.

So the idea of building a sense of community into supporting people to control their own health not only makes common sense but also has a growing evidence based behind it.

Important dimensions of ‘We’ not ‘I’ are the relationships between the health care professional and the individual, and the health system and citizens. As we are all aware this is delicate, tricky and complex because we are human beings. The place to start must be with shared purpose and responsibility, not paternalism and a lopsided power base but the co-production of solutions which are meaningful to us all. If we genuinely wish to support people to feel empowered and in control of their health, we must recognise that the person in the room is a whole person not a condition/set of conditions, e.g. ‘a diabetic’.

So here are some descriptions of people:

  1. A person who lives with Diabetes and Asthma and is a Patient Foundation Trust Governor
  2. A person who is a wife and mother of 2 primary school age children and a volunteer reading buddy at school.
  3. A person who has an MBA and is a CE of a social enterprise

This is not three people but one! When this person walks into the consulting room or surgery they bring all these different facets with them. Each patient or person comes with an individual set of circumstances and resources/assets and so does the health care professional, all of which may be useful but it can take time, trust and listening with intent to understand to effectively utilise all that we bring into the room.

The ‘We’ of community and peer support networks and the ‘We’ of the clinical/patient relationship are important factors of helping us to take control of our health.

Here are a few examples of existing and emerging related approaches and activities which help to build the ‘We’ into Wellbeing:

To complete this post a quote which sums it all up in one sentence…..

Ethos of We Love Life

Postscript:

John Walsh recently wrote a very thought provoking post on his excellent ‘yes to life blog’ which articulates the value of each of us taking responsibility for building collaborative and connected communities.

Move More Sheffield & the first steps in the Asset Based Community Development Journey

Move More Sheffield has emerged from a history of community, public health and academic interest in increasing physical activity across Sheffield. Enhanced by the Olympic legacy work and the Centre for Sports, Exercise and Medicine and building on what has happened in the past, a growing number of people who share a passionate for this cause are getting together in our city under the banner of ‘Move More Sheffield’.

There is the usual Board but this one is operating in an unusual way. I have spent 20 years managing, supporting and sitting on various Boards and I can honestly say this one is different in culture, approach and actions. The Board, chaired by Dr Ollie Hart, a local GP and guided by Dr Rob Copeland a physical activity psychologist and researcher at Sheffield Hallum University, is an eclectic mix of people who share a commitment personally and professionally to the Move More mission of changing the culture of physical activity in Sheffield.

The Board does things differently, we move more in meetings, there is a genuine sense of shared purpose and equality of respect across the different roles and  it acts as a facilitation board rather than being directive. It is also acting as a central point for building bridges across many different networks. NHS Improving Quality Chief Transformation Officer  Helen Bevan champions this approach as a means for transformational change lending from Batillana and Casciaro’s The Network Secrets of Great Change Agents.

Last year, as the Board was forming it reached out to the wider community by hosting a large 300 people strong event and through media and social media means. It asked what assets do we already have, what ideas do we have and what gets in the way. The results of this ‘consultation’ were combined with research and evidence to develop the Move More Plan, a framework for action. At the heart of this plan was the recognition that cultural change will only happen if genuinely owned by the citizens and communities of Sheffield and that this cannot be imposed. The Board learnt about the potential of ‘asset based community development’ as a means to transform the power base and culture of creating thriving healthy communities. It recognised the incredible experience of community led activities in this city, in particular community health champions, and the potential tool of digital technology and set off on a journey of discovery about how we could bring these three aspects together to make a transformational and sustainable difference to the quality of life of citizens and communities in Sheffield.

The first step was to bring some outside expertise to the city to help those who feel a connection to the ambitions of the Move More Sheffield Network to come together, learn more about asset based community development and consider how we might take action collectively and in our communities. So we invited Cormac Russell of Nurture Development, Europe’s leading light in asset based community development to come to Sheffield and host three development days. In early May, 90 people from many different backgrounds united by a passion for changing the culture of physical activity in Sheffield came together to learn about the approach, the principles, to experience some of the tools and techniques of community building, to listen to the experience of Croyden from the fantastic community builder Jennine Bailey and to reflect on how we can apply this approach in the context of what we have in Sheffield. A follow up survey showed that most people felt we should continue our asset based community development journey.

 

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Around one-third of the participants of the development sessions came together one rainy evening two weeks later to reflect on what they had learnt and what our next steps should be both collectively and in our communities.

At this point I noticed a change in the conversations. From the usual desire for a strategy with targets and actions linked to a hierarchy of responsibilities, a business case and allocated budget, the talk was of informal networks, celebration of our amazing existing assets, recognising the value of the connections we could make, talk of citizenship not volunteering. In true ABCD style it felt like the Sheffield glass was brimming with ‘assets’ and ideas and that the biggest problem that we need to tackle was not lack of resources but the need to build bridges, communication channels, information sharing and connections and relationships between people, organisations and networks.

Two examples stood out for me:

Rachel has a field with three horses in a beautiful part of the city, she is skilled in horse whispering, knowledgable and committed to environmental sustainability and willing to share her knowledge and skills and space, a fantastic offer! Through this experience she is now talking to people in community organisations about bringing young people from another part of the city to camp in her field and learn about horses and the environment.

Stuart has a role with Sport England to help secondary schools in Sheffield to maximise the potential of their facilities and open them up for community use. He has built relationships and understanding with all the schools in Sheffield and now wishes to build bridges between schools and people, networks and organisations in communities who could benefit from the facilities the schools offer. The roomful of well networked people the Move More Network offered their support to help make those connections.

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As the dust settles on this exciting turning point in our collective approach to changing the culture of physical activity, we may not yet be able to see the whole staircase but iterative steps are being taken, bridges are being built, personal and organisational connections are being made and action is being taken in small groups and at a city-wide level.

The cultural change is running deeper (excuse the pun) than physical activity, it is building on a people power approach which already existed in the ‘People’s Republic of South Yorkshire’, unleashing our potential and helping us all to feel more empowered to act on what we feel passionate about changing without permission or direction from a hierarchy of power but supported by connections in communities. As an integral part of the city, More More Sheffield is becoming  a catalyst for a cultural change which is fundamentally about citizenship and building thriving communities.

If you are interested in getting involved contact Move More Sheffield  or connect via twitter @movemoresheff

If you have a long-term condition and are interested in specialized support to move more check out Miracle Cure

And I would also love to read your  reflections, views and ideas below …

 

(N.B. Roz Davies, We Love Life is a member of the Move More Board/Network)

 

PostScript:

I recently read two enlightening pieces about the power of communities, the first about the Aboriginal definition of health and the second about the power of asset based community development, here they are for those who are interested..

What can we learn from Indigenous understandings of health from Tim Senior with a HT to John Cosgrove

The power of asset based community development from Cormac Russell, Nurture Development

 

Health and Well-being Citizenship Resources:

A mixture of research and information articles, publications and websites which showcase principles, approaches and stories of community development and citizenship in health and well-being NESTA co-production catalogue  NESTA the business case for people power health  SCIE Co-production and participation:older … Continue reading