Care Centred Communities

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

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

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

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

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

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

Definition of health:

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

(HT Dr Tim Senior an Australian GP)

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

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

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

Patients as Partners

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

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

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

Here are 10 key learning points:

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

Unleashing the Potential of our Community Assets

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

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

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

The third and final element is digital as an enabler.

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

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

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

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

 

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POSTSCRIPT

1. A CALL TO ACTION:

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

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

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

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

2.A THANK YOU:

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

 

 

 

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