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Involving people in decisions about their care

Mark Doughty, The King’s Fund

Mark Doughty is co-founder and director of The Centre for Patient Leadership. He has designed a number of award-winning patient leader programmes and advised organisations, including NHS England, on patient leadership. Mark, who is also a Senior Consultant with The King’s Fund shared his experience of living with a long-term condition, with an audience of health and care professionals, at a conference last year. Here’s a summary of what he said.

"In my early twenties I developed rheumatoid arthritis as well as a number of other conditions. As a young man the impact on my life of developing a life changing condition was huge. I just assumed I would get married, have kids, and develop a career.  With the onset of arthritis I went through a process of trying to make sense of who I was, and I engaged with the health and care system to support me to manage that condition.

This experience was good and bad, good in the sense that it was often the individual and small pieces of care that profoundly impacted on me. For instance I remember the nurse in outpatients who recognising I was upset came over to me and gently put a hand on my arm and asked if I needed anything. Whilst an example of a bad experience included being in a system where because of the complex nature of my health conditions I needed to be able to gain access to the different parts of the system. I needed to speak with different departments who were treating my condition. These different parts of the system were very focused on what they needed to do with me. They engaged very effectively in a diagnostic process to identify what they needed to do in order to 'fix' the problem from their perspective. Unfortunately they very rarely talked to each other and there have been times where this lack of joined up care and shared decision making had a detrimental impact on me as a person, as well as my health.

I was left with the distinct impression that I was a collection of symptoms, problems and health issues that needed resolving, managing and fixing, rather than Mark, a scared young man who initially needed to be seen and heard.

So what I’ve done over the years since then is taken my personal experiences and the training I have done, to support my personal development and I have worked to support patients, service users, carers and other members of the community with an interest in health and care. My support has included enabling and facilitating others to get their needs met as they engage across the health and care system. I am particularly keen in supporting others to have conversations that enable them to turn up at the various decision-making tables in the system and be perceived as someone with a valid voice to be listened to and heard. I’ve also tried to work with health and care professionals to support them to reflect on what they might need to do differently, how they can 'show up' in a way that supports healthy working and healing relationships not only with their peers and colleagues but also with patients, service users and carers. 

When I was receiving care in the early days of living with arthritis, I felt the focus was on fixing me in the most efficient way possible, identifying the problems that needed to be resolved, in particular the inflamed joints. Then diagnosing and identifying the causes of those inflamed joints and finally offering me a drug based solution. And yes at one level I was grateful for this, but on another level I struggled, because when that was being delivered, it felt like it was being delivered through the lens of the medics worldview and that included labelling me as the 'arthritic in bay four'. Power resided in the hands of the medical professionals and they were the experts making the decisions. Things have moved on now, and I feel I have a very different relationship now with my health care professionals particularly my rheumatologist. This is summed up and reflected by what happened when we first met. That first encounter went something like this "Mark I gather you’ve told the nurse that your aim is to live a well and fulfilling life with your arthritis?  Okay, so what do we need to do together to help you to do this?"  Up until that point (25 years of being within the system) I had never had a conversation like this before. For the first time I finally felt truly seen and heard and not only that, but felt I had entered into a relationship based on mutual respect. This relationship has subsequently developed into what I believe is a true partnership where we both respect the role of the other as well as clearly understanding our own responsibilities. 

I think my experience with the rheumatologist points towards the importance of quality relationships throughout the health and care system. I think collaborative and partnership working, although not easy to achieve, is so important if we are truly to deliver quality and safe care now and in the future."



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Kristyene Boreland 10-Feb-2018 at 12:50 hrs

That was truly empowering an article. Patient centred outcomes ensure the best outlook for social engagement in the long run.


Brendan Clarke 09-Feb-2018 at 22:49 hrs

So much of this article totally reflects my experience of being treated (or more and more frequently not receiving any treatment) as a series of different problem parts which have no single totality or inter-relationship. Whilst I do not doubt my clinicians in their selected area of expertise I detest being told that a letter will be sent to my GP to suggest that I be kicked into the long grass with a referral elsewhere.

I am dubious about simply blaming clinicians because they are very obviously have management restrictions on what they can and cannot do. Currently I am on an urgent list (from 12/12/2017) for a procedure which requires a free operating theatre. This stems from management postponing April 2017 appointments until January 2018. I managed to get my April 2017 appointment in December because I needed to be seen. It was plain that that postponement of appointments had been taken by management with no individual clinical assessments.

I have been in the system for 50 years as an adult and would not be alive today without the care I have received over those years. Even as a toddler I was not expected to survive a stay in the Burns Unit but clinicians enabled me to get home again. That must have been 70 years ago because my parents were relieved that the founding of the NHS meant they did not have to pay any of my care.

I fully take on board Mark Doughty`s words about the importance of a good relationship. I have many inspiring people whose attitude lifts you to do more and strive to attain your maximum but unfortunately a majority seem to concentrate on the things you can`t do and their negativity is draining. The best drug for health is the sheer happiness of finding you can do without any problem that which you were told was beyond your capacity.

I have to concede that it does seem to be beyond my capacity to convince Health Service managers to think further than A-C
because even the best of ideas can fail if they are not considered from A-Z and then fully communicated effectively to the people affected.

I receive so many letters from people with fancy titles who clearly have little knowledge of what actually happens in the NHS that I do believe that a cull of management personnel would lead to better management of the NHS.

Since fancy titles usually bring a fancy salary perhaps the Patient Client Council could mount a Freedom of Information Request as to the number of Health Service managers earning more than £50,000 per year related to the population of Northern Ireland. Then the axe can swing.


Joy Scott 09-Feb-2018 at 15:09 hrs

Sounds utopian, but as I health care should be. Patient compliance would be exceptionally high in this scenario