Unlocking Foundation Trust Governor Bridges!

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

For further information about Governors:

 

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

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

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

Traditionally we have used the WHO definition of individual health:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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21st Century Patient Centred Care: Digital Citizenship

#cityonthemove A Story of Resilience

 


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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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

The New National Health Service, 1948 Government Information Leaflet

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

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

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

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

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

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

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

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

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

In no particular order and deliberately uncategorised…..

1. Words of wisdom about life, health and diabetes

http://anniecoops.com/

2. An inspirational story of courage and mental health recovery

http://whoseshoes.wordpress.com/2013/07/01/in-the-shoes-of-alison-cameron-patient-leader-active-citizen-an-inspiration/

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

http://michaelseres.com/

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

http://spoonful-of-sugar.co.uk/

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

http://theglucosekid.blogspot.co.uk/

6. Wonderful young man and poet!

http://intheblinkofaneyepoemsbyadambojelian.blogspot.co.uk/

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

http://tommy-on-tour-2011.blogspot.com.es/

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

http://www.conordevine.com/

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

http://bpdffs.wordpress.com/

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

http://pinterest.com/epilepsyaction/i-am-more-than-epilepsy-photo-exhibition/

11. Great lively blog about living with MS

http://www.livingwithms.co.uk/index.html

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

http://youngleaders.idf.org/leaders/profile/9/

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

http://lisacox75.wordpress.com/2013/

http://www.nhs.uk/Livewell/nhs-anniversary/Pages/altogether-better-lisa-cox.aspx

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

http://iaintnotomato.blogspot.com.es/

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

http://thebigscarycword.wordpress.com/

16. Beautiful poems to raise awareness of mental health

http://www.heartilymindful.com/

17. Poems and information about BPD

http://battlingbpd.org/

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

http://www.downssideup.com/

19. Activist for dementia care

http://kateswaffer.com/

20. Thoughts, experiences and feelings about living with MND

http://northernstar1.wordpress.com/

21. Eclectic blog about breast cancer

http://journeyingbeyondbreastcancer.com/2013/08/11/weekly-round-up-65/

22. Writing about writing and experiences relating to breast cancer

http://bumpyboobs.wordpress.com/

23. A blog sharing the tales of an adventurous diabetic

www.diathlete.org

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

http://www.everydayupsanddowns.co.uk/

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

http://thepatientpatient2011.blogspot.co.uk/

26. A GP and person in recovery sharing insights

http://bulletproofcardie.wordpress.com/

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

http://mybagladylife.blogspot.co.uk/

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

http://www.design4dementia.blogspot.co.uk/

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

http://purplepersuasion.wordpress.com/

30. Important blog about suicide prevention

http://connectingwithpeople.org/blogroll

31. Honest and revealing blog about living with MND

http://northernstar1.wordpress.com

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

http://cancerfree2b.com/

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

http://shestilldreamsincolour.blogspot.ie/

34. Life with type 1 diabetes

https://type1teacher.wordpress.com/

35. Wise words on digital health and citizenship

http://claireot.co.uk/

36. Rebellious blog from a breast cancer survivor

http://kickingtheshiteoutofcancer.com/

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

http://localdemocracyandhealth.com/

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

http://journeyingbeyondbreastcancer.com/

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

http://d4dementia.blogspot.co.uk/2013/08/day-to-day-with-dementia.html?spref=tw

40. Blog about both motherhood and living with MS

http://tantrumsandtingles.blogspot.co.uk/

41. Poems for children with autism

http://raisingrebelsouls.blogspot.co.uk/2013/07/poems-for-autistic-child.html

42. A great blog about living with MS

http://www.stumblinginflats.com/

43. Insightful musings on living with a mental health condition 

http://sectioneduk.wordpress.com/about/

44. A blog aimed at supporting people with psoriasis

http://www.psoriasishelp4all.blogspot.co.uk/

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

http://orangejuiceflavoursky.blogspot.co.uk/

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

http://www.hugodesavary.com/

47. Living with COPD

http://bitz-and-bobz.co.uk/copd/about/

48. Living with type 2 diabetes: an education

http://diabetescgmblog.com/

49. Living with type 1 diabetes from a parent perspective

http://theunderstudypancreas.com/

50. Really informative blog about living with diabetes

http://sixuntilme.com/wp/

51. Tales of everyday life living with diabetes

http://ninjabetic1.blogspot.co.uk/

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

http://ybrumro.wordpress.com/

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

http://nhsrobwebster.com/

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

http://www.northernmum.com/

55. Insights and stories around mental health 

http://thehrjuggler.wordpress.com/

56. Beautifully written blog about the NHS 

http://kirstiestott.wordpress.com/

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

http://copingwiththebigc.blogspot.co.uk

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

http://livingwithdementiablog.wordpress.com/

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

http://diaryofabenefitscrounger.blogspot.fi/2014/01/who-benefits-from-benefits.html?m=1

60. An education about living with the impact of PTSD

 http://grandadevans.com/living-with-ptsd/

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

http://photofitty.blogspot.co.uk/2014/01/yes-i-wet-bed-so-im-going-to-continue.html

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

http://cancercankissmybutt.wordpress.com/

63. A blog about life on the transplant waiting list 

 http://adamjohnhughes.wordpress.com/2014/01/30/life-on-the-transplant-list/

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

http://sportylifewithadodgyticker.wordpress.com/

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

http://brainlesionandme.com/about-me 

 

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

Good source of blogs for parents 

http://www.tots100.co.uk/

Time to change

http://www.time-to-change.org.uk/join-the-conversation

 

 

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

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http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx

 

Gardeners of Connected Communities

 

Cultivating the Conditions for Citizens and Communities to Flourish

#psicare Connected Care Camp 


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

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

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

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

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

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

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

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

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

West Norwood http://westnorwoodfeast.com/about

Stockport http://bit.ly/1bEU8Tb

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

Co-production http://nomorethrowawaypeople.org/
Asset based community development

http://www.abcdinstitute.org/

http://abcdeurope.ning.com/

http://www.nurturedevelopment.org/

Timebanking http://www.timebanking.org/
Salutogenesis http://www.salutogenesis.hv.se/eng/Salutogenesis.5.html
Measuring the impact -LSE http://www.pssru.ac.uk/pdf/dp2772.pdf

 

 

My personal reflections from the Connect Care Camp:

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

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

Social Determinants of A&E

foundation crack

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 And here are some existing examples..

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

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

 Forever Manchester http://forevermanchester.com/

Tyze http://tyze.com/

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

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

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

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

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

151902402

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

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

Diabetes Glass Half Full…

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Glass half full….

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

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

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

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

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

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

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

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

A List of Engagement Resources

I have been collecting community engagement in health and well-being resources which are accessible online for a number of different purposes over the last few months and thought rather than keeping a static list to myself I would share the list which I will update I and hope others could fill in the probably large gap, so in no particular order…..

Please note that by community engagement in HW resources resources I mean publications, articles, resources, tools produced to help improve how patients, carers and citizens are engaged and involved in health and well-being.

NESTA co-production catalogue http://bit.ly/12h80NN

NESTA the business case for people power health http://bit.ly/15ON0CA

SCIE Co-production and participation:older people with high support needs http://bit.ly/13FFsOw

Cormac Russell Asset Based Community Development in a Health Context http://t.co/rTr9fKfd

Edgar Cahn No More Throw Away People http: nomorethrowawaypeople.org.uk

NHS III Putting Patients First: what do we really mean http://bit.ly/1471lpr

DH Better Health, Better Experience, Better Engagement http://bit.ly/11nvCDX

HELP Empowering Communities for Health http://bit.ly/11nvVhY
HELP literature review http://bit.ly/1a2qzH6

International Journal for Quality in Healthcare: Impact of patient and public involvement on UK NHS health care: A systematic review http://bit.ly/119FkIw

DH Smart Guides for engagment http://bit.ly/15t6AEN

NICE Public Health Guidance: Community Engagement Note 9 http://bit.ly/12cqTFw

Tricia Nicoll Consulting Co-Production – how are you doing http://bit.ly/10l9Ysl

Wansworth CCG Toolkit http://bit.ly/12jrxvU

NHS Lambeth Audit tool for engagement http://bit.ly/10ukRt3

NHS Lambeth Health and Well-being Board Charter http://bit.ly/13kmq0N

SCIE Towards co-production: taking participation to the next level http://bit.ly/11VV91Y

CAF Lessons Learnt Coproduction http://bit.ly/ZKVcvY

The impact of patient and public involvement http://bit.ly/13GDQ7h

Bring it on http://bit.ly/ZSdVJK

Kings Fund Leadership for Patient Engagement http://bit.ly/ZKVcvY

Fling open your doors http://bit.ly/18wXuFA

Altogether Better http://bit.ly/1473TnD

LMU Developing an assessment tool for evaluating community involvement http://1.usa.gov/13koC8E

LMU People in Public Health http://bit.ly/12hcSCB

Embedding patient and public engagement in local commissioning http://bit.ly/130NAGx

Macmillan Cancer Support Making user involvement effective http://bit.ly/1477bXS

BMJ Dr Jonathon Tomlinson We must join forces with our patients http://bit.ly/16kdZ8Q

AJPA Co-production and Health System Report – From Re-imaging to Re-making http://bit.ly/1478FS6

Pathways through participation: what creates and sustains active citizenship? http://bit.ly/YIgcZd

Shared decision making http://bit.ly/10J11ZM

HSJ Different strokes for different folks http://bit.ly/175qghr

PC3 Becoming a person centred commissioning organisation http://bit.ly/10dUgn5

High Impact Changes for CCGs http://bit.ly/YIhPWT

Kings Fund The Patient-Centred Care Project http://bit.ly/ZL3PXr

NIHR Exploring the relationship between patients experiences of care and the influence of staff motivation and well-being http://bit.ly/10wdwxJ

How to reconcile participation and representation http://bit.ly/10dVfn6

Health Foundation What is Coproduction? http://bit.ly/17OSZVQ

Picker Institute http://bit.ly/ZL8oRz

NEF In this together http://bit.ly/11nMvy8

Co-production A manifesto for growing the core economy http://bit.ly/12hjdOs

The New Zealand Medical Journal Improving Healthcare through the use of co-design http://bit.ly/15tkmaq

Health Affairs: Patient Engagement http://bit.ly/17OU93z

Scottish Council Participation Toolkit http://bit.ly/13kybEp

Ten Attributes of Health Literate Health Care Organisations http://bit.ly/1311Lv5

Decision aids for people facing health treatment or screening decisions http://1.usa.gov/194pqyc

Responsible Recovery http://bit.ly/ZL6Bw1

From Fairytale to reality http://bit.ly/10dXsiB

Making Shared Decision Making a Reality http://bit.ly/15tmqiy

The Magic Programme http://bit.ly/13kvJhh

VAW Involving people: a practical guide

http://bit.ly/13IpmDO

InHealthAssoc Engagement Cycle http://engagementcycle.org/

Why active citizenship should be at the heart of the NHS http://bit.ly/13876Up

Coproduction of Care Young Foundation http://bit.ly/19jUjmg

#EMpowering Information in Health

Have just arrived home after three days of very different events in very different contexts but all with the same big message!

The first day, I was at the #developingNHSCBcitizenvoice event held by the NHSCommissioning Board for around 200 third sector organisations with an interest in citizen/patient/public voice. We heard an inspirational vision of an NHS that is led by principles of transparency, participation and collaboration from Tim Kelsey @tkelsey1 and Ciaran Devan (Nat Director and Non Exec Director/Macmillan on the NHSCB). Not to forget some excellent challenges and debate from Paul Farmer (MIND) and many more.

The second day, I was working with a small group of great people linked to South West Yorkshire Partnership Foundation Trust http://www.southwestyorkshire.nhs.uk/ on the co-production of an innovative approach to working with citizens to help patients navigate the health system linked to telehealth and other technologies.

And on the third day…. I was with 1000,s of ‘Executives’ mainly in and around the NHS at #confed2012

At all three events, voiced by many, were the following key messages:

  • The NHS is running out of time, we have one last chance to preserve what we all find precious about it, i.e. that it is relatively high quality, full of innovations, has a strong ethic behind it and is free at the point of contact. We have to face up to the pressures of growing demand, a different not patient, competent consumer and a very challenging financial and global climate. Paul Hodgkin http://www.patientopinion.org.uk/ talked of the immient Eurozone crisis and how this could hit our healthsystem, citizens and society hard compounding the difficult decisions and conflicts which already exist. Mike Farrar @farrarmike of the NHSConfed spoke of the NHS being a supertanker heading for an iceberg.
  • Citizens are part of the solution not simply passive consumers of health. The settlement between citizens and the health system, competent consumers and health professionals needs to change and become fit for the 21st century. Sophia Christie has written an excellent publication with the NHS Confederation which articulates why there needs to be a new relationshiphttp://www.nhsconfed.org/Publications/Documents/Personal_experiences_280212.pdf. Altogether Better www.altogetherbetter.org.uk have also written a joint publication with the NHS Confederation which shows just how that has been done at a community level through the Community Health Champions Model. http://bit.ly/NBPBXL

Bringing all three of these messages together Information and technology is a huge gift to the NHS that we need to embrace, not as the end output, but as the rich tool for achieving great things within health. However, there is one huge caveat, citizens must be mobilised and engaged in the developments or it will, at least, be a missed opportunity and, at worst, be a failure and waste of resource.

The best case scenario from my perspective would be that we brought active citizenship as an equal partner into information and technology developments. This could mean:

  • people to be involved in co-producing new assisted technology
  • volunteers in community be involved in marketing and supporting members of their community to use telehealth/care services
  • the conditions be created for new social networking opportunities which connects citizens with each other and the health system
  • that collaborative clinical technologies involved the patients they are being developed to help support
  • and most importantly to me that health’ communities are supported to build social capital, relationships with each other to ensure that technology does not exacerbate inequalities and increase isolation and the well known health challenges that these outcomes would bring.

All in all, an inspiring few days, although I really, really hope that this time next year all three of these gatherings have created the conditions where active citizens in health are able to join the discussions and tell their own stories.

On that note Lisa, an amazing Community Health Champion did go along to the first event (although was one of few and has actually recently got a job supporting new Champs- congratulations Lisa). I know Lisa so had already heard her story up to the point where she became a volunteer CHC after her GP connected her a the local community organisation. Three years ago she used to self harm regularly (see http://understandingdifference.blogspot.co.uk/2011/05/altogether-better.html for that part of the story) but what she told me this week was that she has a job, her self help group have been commissioned to replicate 8 times, actually the ‘systems’ counselling service (she was refered to and never received) now refers people to her group and she is supporting people who self harm through a social networking group reaching as far away as Singapore, oh and she worked out that she has saved the NHS £200,000!

Think that says it all! It gives me inspiration to do what I can to help create the conditions for people to have more power and control of their own health and the health system through information and technology.

Co-production in health: A new settlement between citizens and the health system

Last night I re-read three inspiring articles about co-production.

They stopped me in my tracks as I realised, that with the enourmous financial and societal challenges and the fundamental shake up of the health system we are experiencing at the moment, comes a unique window of co-producing a brand new settlement between health systems and citizens which could mean a genuine and deep-rooted transformational change in our whole approach to health and beyond….

First developed by Elinor Ostrom in the 1970s and taken further through the timebanking movement, co-production is emerging from the ether across the country, particularly though not exclusively (e.g. see Cornwall County Council), in health.

From a health perspective the potential that co-production offers if taken up at scale is incredible. Co-production really is the ‘emerging paradigm’, as the quote from Bovaird says in Dunston, R., et al (2009) ‘Co-production and Health System Reform- From Re-Imaging To Re-Making’.

To move from a traditional paternalistic approach where patients have ‘choice’ and  ‘voice’ to one where the conditions are created where citizens and consumers, services delivers and other stakeholders share equal and reciprocal rights and responsibilities in the design, delivery, commissioning and management of public services could be transformational both in processes and outcomes for the health system.

Key to the approach is the focus on relationships, dialogue and a shared understanding and ownership of the guiding principles, creating the right conditions for the right conversation.

NESTA articulate the cost benefit outcomes of potential really well in their publication Boyle, D. and Harris, M. (2009) The Challenge of Co-Production, NESTA:

•Delivering better outcomes:
•Preventing problems
•Bringing in more human resources
•Encouraging self-help and behaviour change
•Supporting better use of scarce resources:
•Growing social networks to support resilience
•Improving well-being

At Altogether Better (www.altogetherbetter.org.uk) we have experienced the potential of co-production through the (20,000 strong) community health champion model where individuals, communities, groups and local health systems have begun to achieve incredible transformational change in health outcomes and productivity within the system with evidence of all of the NESTA outcomes.

The Health Foundations’s publication, Realpe, A. and Wallace, L., (2010) What is Co-production?, Health Foundation, is an interesting exploration of the potential for co-production through consultations for people with long term conditions where good self-management is a key contributor for living well. It makes interesting reading for me  as a type 1 diabetic. I have personally experienced a move in the direction of co-production through the ‘DAFNE’ approach to diabetes (www.dafne.uk.com), the connection with co-production is that it creates the conditions for the patient to gain control and power over the management of their condition through building confidence, The outcomes for me were: much better HBA1C (blood sugar level control – which evidence shows reduces risks of complications and huge costs to the system), two healthy babies and generally a very healthy and happy lifestyle and it spurred me on to become a volunteer governor at the Foundation Trust who provided the training and support.

Another fabulous example of co-production happening right now is the Leeds Hubs (administered by CIHM)  where citizens, patients, services, academics and others have come up with a set of simple guiding principles:

•Start with listening
•Treat all people as assets
•Find out what we are ambitious for together
•Invest in the development of communities so they can be partners
•Value and make the most of expertise gained through experiences
•Do with not too – challenge them and us
•Professionals – ask how you can help people to help themselves
•Take time to get to know each other – build social networks

So if we understand that our health system cannot continue to operate as it stands and we cannot afford to deliver expectations and meet the demands of an ageing population with complex needs and competent consumers and we have a transformational solution which unlocks a (low cost) a previously untapped resource (citizens/consumers) and shares the rights and responsibilities as well as the power and control across many rather than few, surely it is time to scale up and systematise that solution?

Imagine the possibilities if this approach became integral to all planning, commissioning, delivery and management of health services from national to local. Surely, co-production in health really is a no brainer, isn’t it?

Four really useful articles for gaining a broad understanding of co-production in health

aupa_608_HR_co_productionAJPA_March1

Co-production-report

Nesta Catalogue

What is co-production