If the technology works, this blog should go live at a very important moment. I am delighted, but not at all surprised, that Alison Cameron has been included in the first ever list of HSJ Patient Leaders. And I will be there with her, as her guest in Birmingham, chatting to her lovely dad and enjoying every minute.
I was delighted to nominate Alison and also one or two others who have been successful, including my good friend Ken Howard and inspirational #MatExp leader Leigh Kendall. What a triumph for #HugosLegacy. It will be nice that Alison already knows Ken and Leigh has used the logo that Ken designed for our #MatExp campaign. All the different strands coming together and interweaving; people rather than labels, just what I love.
But this is about Alison and I was delighted that Alison uses a cricket analogy. This is a lovely combined tribute to her dad and to me, as you will see in her blog. We often have a bit of banter on Twitter about cricket.
So I would like to take the opportunity to give Alison a little team talk…
You have played a tremendous innings, Alison. And as so often happens in cricket, some of the early overs have been really hard and you have had to stand your ground and dig in. You have watched the ball fly past your stumps, perilously at times, but never quite taking you out. Now, you are looking far more at ease and showing your true class. You are coming up (not immediately!) for your 50 and everyone knows that the going gets easier after that, if you just keep going, don’t get complacent … and look to smash the odd bad ball out of the ground. 😉
Alison has already written her story in three parts on my blog. Parts one and two described the trauma that led to her illness, and her long-term experience of disjointed care, causing her to fall through the cracks (chasms?) in the system. Part three was triumphant last year when we were both delighted to be listed as HSJ Inspirational Women. This is part four.
Mark my words, there WILL be a part five, and I am so looking forward to publishing it in due course. Alison’s story is very special and I am absolutely chuffed to have played a very small part in it …
When this fourth blog for Whose Shoes? goes live, Gill and I will be up to mischief again as Gill teams up with my Dad as my guests at the first HSJ Patient Leader awards in Birmingham. The down side of course is that I will have to listen to a lot of cricket talk. I was brought up around cricket with abiding memories of Mum trying to get grass stains out of whites, me cutting crusts off endless rounds of salmon paste sandwiches and Dad regularly damaging an appendage or two all in the name of the game. Dad is still involved with his old club in Buckie and coaching primary schools kids at 70 something. Gill too is from a cricketing family with her son being an up and coming cricketing star.
Am stumped to come up with enough cricketing metaphors but suffice to say I am truly bowled over. It is a very special thing to be recognised for my work putting my experiences of using health, social care and housing services to good use. I am hopefully planting seeds in the minds of professionals who will go on to make changes in the way they work, and in patients who might through hearing me realise that a long term health condition can be a start not an end point.
Occasions like these give me a chance to reflect on how far I have come which I can forget to take time to do. Nine months ago I finally felt confident enough to start working for myself. After seventeen years since illness forced me to give up my international relations career which caused a downward spiral into homelessness and hopelessness I finally took the plunge into working for myself. This took a real leap of faith. I was dependent on Benefits and subject to the constant round of form filling and assessments not to mention the relentless barrage of judgement from the likes of the Daily Mail. It is hard to have self-belief after such an extended period of dependency.
Being on Benefits is not easy nor pleasant but it became safe through familiarity. By making the decision to come off Benefits I was making a declaration that I felt I had worth, that I had something that people might consider worth paying for. I had struggled for a long time to see myself as anything other than a bundle of symptoms and problems to be solved so this involved redefining my entire identity. It was a very scary thing yet it was exhilarating and exciting at the same time.
I could not have done it without support from people like my Dad who has always stood by me, Gill and Gill’s Mum whose encouragement of my writing was a real turning point, from Mark Doughty who coached me through a lot of the dark woods in which I often failed to see the trees until I bashed right into them, and from Helen Bevan who saw something in me early on that I just was not ready to see myself. Thanks to all of them and many many more and I am now being paid to do work that I love. I work with Helen’s fantastic team at NHS IQ Horizons Group writing and curating for The Edge online change leadership hub. I am now at the Kings Fund as an Associate contributing to Leadership programmes and other work across the Fund. I get particular pleasure though from working with people at the start of their careers. This September for example will be the second year running I have talked to the new cohort of the NHS Graduate Scheme and I have also had the privilege of working with nursing students at Southampton University.
I thought my diagnosis represented the end of my useful life but in fact in turned out to be the beginning of something more important and more real than what I did before.
We patient leaders or however we choose to define ourselves, are in fact a very useful, very active lot. We turn up over and over again to give all we can with often little return to help make things better for our NHS and other services that we use often across seemingly insurmountable barriers. We can get drained, negated, used, at times abused, misunderstood but also at other times appreciated respected, valued and at times like this even celebrated. We come in all guises, a motley crew if ever there was one, beavering away in whatever roles we have ended up in – as activists, community champions, peer supporters, researchers, quality improvers, critical friends, teachers, trainers, coaches, designers, innovators, representatives – unusual suspects if ever there was such a thing. We even have our first Patient Director in the shape of David Gilbert.
What unites is not the specifics of role but the way we work. The NHS Leadership Model describes a leader thus “the most important element comes from a combination of emotional expressiveness, self-confidence, self-determination and freedom from internal conflict” and is more about how we manage ourselves than manage others.
These are the qualities of a “patient leader” too rather than someone merely called upon to recount their patient story. It is about a mindset, how we collaborate, know how to ask the right questions, and understand when to use our personal experiences and when to leave them at the door. Yes, we might demand that professionals walk in our shoes but we are prepared to walk in theirs too. We have learned to manage our own health conditions, and made the choice to move from self-management to self-leadership then on however we choose to do so, to leading change in the wider system. Combining our leadership qualities and personal insight with professional expertise is not forcing professionals to lose power, it is creating a stronger power base so there is more of it to go round. This is a source of new power that the NHS and social services cannot afford to waste.
I love what I do even though it can frustrate and drain me. For a long time my motivation to push for change was based on a combination of anger and survivor guilt. Over time this has changed and I realised that my work gives as much to me as it does to the people with whom I am working. There is something really special about seeing the spark of ideas light up in people who are hopefully going to go on and use this way of thinking and working in their future careers. I am regularly moved to tears when I see my experiences and how I relate them lead to a lightbulb moment for a student or healthcare professional.
A real milestone this year was being asked to be a keynote speaker on the final day of the NHS Confederation conference.
The response was overwhelming and amazingly I ended up being ranked Top Influencer of the conference with someone called Jeremy Hunt coming in at number two. More important though was the fact that Dad watched it up in Scotland live on the internet and told me it made him emotional. It is not easy for my family to hear the darker side of my story so the fact he felt proud of what I did meant a huge deal to me. Also after my speech a patient approached me who had had a stroke and through his carer told me that what I had said had given him hope for something he could achieve in his own life. These are the things that really matter.
My speech that day was about my journey from disembodied, disempowered patient “voice” to patient “leadership”. How can “patients” – a term I used deliberately for its connotations of passivity – possibly be “leaders”? It depends on how we define Leadership. We can judge it by place in the hierarchy, by salary levels, by the material indicators of “success” but in my view it is not about those things. To return to cricket it brings to mind a quote from former Scotland and Indian cricket player Rahul Dravid (whom my Dad has met in Fochabers he tells me).
“I think we judge talent wrong. What do we see as talent? I think I have made the same mistake myself. We judge talent by people’s ability to strike a cricket ball. The sweetness, the timing. That’s the only thing we see as talent. Things like determination, courage, discipline, temperament, these are also talent.”
These are the very qualities that we celebrate at the HSJ Patient Leader awards.