The Rules of Engagement

I am increasingly concerned by the use of the word “customer” to describe people who use the NHS and social services. I hear it often in meetings and it is, in my opinion really dangerous. It is dangerous for 2 reasons: firstly, it assumes that people “buy” services, which they do not (because our services are not and must not become based upon ability to pay); and secondly it creates a very unhelpful understanding of how we expect people to behave in relation to their own health and the health service i.e. as consumers, rather than participants.

 

I heard recently about a practice in Columbus, Ohio, in which before beginning an operation, each member of the team: the patient, the surgeon, the anaesthetist the nurse, the ODA and the recovery nurse all stand in a circle and agree who is responsible for which bits of the healing process. It takes into account the ‘checklist’ idea of Atul Gawande and expands it further. Each person, including the patient (except in emergency settings when they are unconscious) have some responsibility to take for the healing that is about to ensue. It is vital that the patient themself understands that they have a key role to play in their own recovery.

 

If people think of themselves as the ‘customer’ or we think of them that way, we can all too easliy exclude them from taking an active part in their own health journey. The NHS is not a sweet shop or a passive experience in which you have things done to you – at least it shouldn’t be. Creating a ‘customer base’ is the antithesis of a social movement for health and wellbeing and we need to stop this really unhelpful language now!

 

There is a step-ladder approach to thinking about engagement and participation which is really helpful. I’m not exactly sure who first drew this, so can’t give credit where it is due:

 

 

We are actively producing and encouraging a society of passivity and consumerism and we need a sizmic shift in our thinking to create a totally different approach to how we think about our health and wellbeing.

 

If we think of, or encourage people to think of themselves as customers of our health and social care services (and this applies across the public sector, so this could equally be written about education, the cleanliness of our streets etc) then we assign people to the bottom two rungs of the ladder as victims and consumers. It is no wonder that we are facing some of the issues we are. It has created an incredibly unhelpful and unhealthy power dynamic and has caused an enormous strain on our services.

 

I’m not talking uncompassionately here. I know that many people have to live with long term conditions that can be utterly debilitating and difficult to cope with on a day to day basis. What I’m talking about here is how we respond to people who live with those complexities every day. We don’t have to treat them as victims, nor as consumers. Surely, we want people at least to be able to translate what their choices are – what’s possible for me or even what is in this for me? It would be one step better for people to be able to actively participate in their own care – this can be both active and reflective. But what about people being able to shape or co-produce the kind of care they would like to see and what might their role be in this?

 

Co-production calls for a double accountability. What is the responsibility of the person who has a certain condition and what is the response ability of the service to work with that person or group of people around that condition/situation? It is not for us to be taking power away from people. We have to learn to work differently and to work with people.

 

People using the NHS and Social Services are not customers and we must stop talking about them in this way. They are active participants in their own health and social needs, who should be able to shape and co-produce the kind of services we all need to improve our health and wellbeing. This kind of approach is vital if we want to see an end of the consumer mentality and an embracing of a greater sense of corporate responsibility.

 

That is why I am so passionate that we take our financial difficulties and conundrums out to community conversation. It is not for those of us in positions of power to make decisions on behalf of our communities, (even though this is our statutory responsibility) because if we do, we will only deepen the victim/consumer mentality. No, we must be honest, change our language, share our problems and engage together to recognise that the future of the NHS and Social Care belongs to us all and is our shared responsibility.

 

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Learning from The Well

The Well is an extraordinary community of people. I respect them deeply and learn so much from every time I have the privilege of being with them, listening to their stories. They are all people on the journey of recovery from drug and/or alcohol addiction. They are welcoming, non-judgmental, caring, embracing and kind. Most importantly of all, they offer hope that no matter how far into hell you have been, there is a way out and no matter how badly you have messed up, you are lovable and worthy of a new chance. There are countless stories of those who have gone before, through the “12 steps”, and found transformational grace and and the chance of a new life. The support they give to each other, especially at times of trouble is based on openness, honesty, trust and a genuine love for each other that holds through difficult battles for a better future.  Every story I have heard has humbled me, and each time I am with them, I go away changed and filled with fresh hope. I am so grateful that I can now count several members of the community as my friends. I feel we, as the medical community have much to learn from them.

 

 

After my last meeting with The Well community, which was in Barrow In Furness, I then spent some time with an excellent Diabetologist, Cathy hay, who is employed by Cumbria Partnership Foundation Trust, but works at Furness General Hospital (another example of how we are breaking down boundaries and working more effectively as part of Better Care Together). I was learning from Cathy about how she and her amazing team are transforming how they care for and work with people who have diabetes. Like me, she believes that hierarchical behaviour gets in the way of building good relationships across teams, playing to each other’s strengths and working effectively with patients. She has worked hard to break down the ‘need’ for consultant follow-up clinics, putting the power back into patients hands. They have had a much more proactive approach at working with patients to really educate them and empower them about their own conditions through the fabulous work of the Diabetes specialist Nurses and Dietitians and a team of Psychologists, lead by Elspeth Desert, who help patients learn how to face up to and cope with physical health issues.

 

Group programmes (such as DESMOND, DAFNE or the X-PERT courses) enable patients to build supportive relationships with one another and networks form in which patients are rightly able to become the experts in their own conditions, supported by a team of people who they can draw on, as and when needed – determined by the person with the condition. This cuts the need for outpatient appointments drastically and releases the team to work far more effectively. The ‘Walk Away from Diabetes’ programme encourages those with the earliest warning signs to try and avoid lifelong medication altogether through exercise, dietary changes and accountability with one another.

 

In some ways, the approach is similar to what I have experienced of The Well and it got me thinking about just how transferable this approach could be across health services, in an extremely timely and cost effective way…..(which although sounds potentially a little mercenary is actually really important – we do actually have a responsibility to use the resources we have as well as we can, and our previous models are no longer deliverable, given our financial and staffing pressures, let alone the increased numbers of people accessing services). What if, once people are diagnosed with a long-term condition, we give them the option of a self-directed, learning approach to their condition, in the context of community with others and a supportive network around them? We could save an inordinate number of unnecessary outpatient appointments. It puts people back in charge of their own bodies and conditions, far more empowered to make informed choices and enables care to be available in a more efficient, cost effective and timely manner. Communities of people, facing up to their conditions together, learning together, helping each other, supporting and resourcing each other and finding improved health and wellbeing at every level as a result.

 

Many people across the UK have at least one long term condition. Many of these people also struggle with a mental health problem at the same time, often linked to the condition they live with. A more cooperative approach can break down some of the barriers and enable people to connect, which will improve both their physical and mental health at the same time.

 

We are beginning to see an exciting redesign of our respiratory services along these lines, lead by Pat Haslam, Farhan Amin, Tim Gatherall, Shahedal Bari and the team……I wonder how brave we can be across the board and how much better our care might be together if we did?

 

 

 

 

 

 

 

 

 

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