Alison Cameron: Patients as partners - bridging the gap between "them" and us"
This presentation was given at The King's Fund annual conference on 19 November 2015.
Bridging the gap between them and us. Someone called Don Berwick who said this, “I think it’s very true, it drain spirit, it drains motivation, it drains energy and it drains an awful lot more. It drains resources, it drains vital resources that we can't afford to have drained at the moment, and the thing with waste if left untreated it becomes pollutant. Pollution we can do without, there’s enough of it around. In my very brief time I want to get over the idea of patients as more than needs, patients as part of that resource that can be potentially utilised.
I’ve been around this world for quite some time, it’s 17 years since my diagnosis with post-traumatic stress disorder and various other consequences of having that which included homelessness etc. I’ve perceived how tribal some of this stuff can feel and you know there’s a patient tribe as well I’ve been part of that, The Angry Patient Brigade. Yesterday I spoke at the Managers in Partnership trade union event and I was hearing more about the them being the backroom staff and the us being the frontline staff. So you know when there’s a climate of a lot of fear, a lot of chaos, a lot of people not feeling secure for whatever reason, inevitably there are defensive positions and it was lovely to have an opportunity to put some Monty Python by the way in the King’s Fund. I won't say your mother is a hamster it’s a bit too obscure.
About boxes, we can assign other people to boxes, we can hide in them and take refuge in them. I got quite comfortable in the patient box myself. It’s all about it forming a different kind of relationship. Another person I hear talk of called Simon Stevens does talk in the five year forward view about this new relationship with patients and communities but I wonder how new this is.
I’ve started lecturing now to brand new medical students, it’s brilliant, and I asked them to guess when this was written. They’re so young they can't really conceive of anything quite as ancient as me, so when I tell them it’s actually older than me they look really shocked. This is Gerda Cohen in 1964, already challenging the medical model there in her ‘What’s Wrong With Hospitals?’, that was discussed in a debate at the House of Commons at the time and the Reverend Llewellyn Williams from Abertillery in Wales in 1964 said, “We’ve made so many advances but where we get it wrong is around communication” and he felt that the core of the matter was relationships, this is all about human relationships. This is 1964, most policy has said this stuff since then.
This was also said about power, this is was Gerda Cohen witnessed when she observed a psychiatric unit close to my heart because I’ve been in very many mental health wards in my time. About power, you see power is an important aspect of any relationship and any discussion of this stuff without discussing power is missing a massive elephant in the room. The ladder of engagement is very much about how power shifts as people become more engaged at whatever level just in community in general, the Arnstein ladder of engagement exists in various forms but I quite like this one because it’s got those what have become somewhat buzz words, co-design, co-production right there at the top. There’s an awful lot of engagement goes on in that middle bit and what I would stress is it’s great to do that stuff and get it right, it’s not that I'm saying the lower levels are wrong, it’s just to make people aware that where you may think that just by having patients in, telling our story or being on a committee or being experts by experience, that you’ve got it cracked, you’re probably quite far up the ladder but there’s a bit further you can go if you really want to do that.
I perceived two different journeys up the ladder if you like. One was in relation to my own care, regaining power in the sense of my own individual interactions with my care team and then the other before I really had to do that, before I could then go on to be part of influencing effectively on a collective level but I’ve noticed they go through the same stages. So the very bottom, the passive stage, this is my alternative CV because it’s like I left my career and everything I had before that at the door in return for this new career path I was on, and if I’ve been in any institution or service or hospital where I’ve besmirched those rooms with my presence, when I was in the maelstrom of mayhem that one doctor called me, a lot of this I don’t remember. It is so right to describe crevasses because very often I had fantastic quality care in individual pockets but the fatal crevasses between the services was where the danger lay, because I was homeless, I was being patched up medically and exited back out into oblivion. But I would also say, this is a terrible thing to have to go through for 17 years, but it’s a fantastic source of expertise.
I can you about integration because I’ve been there, I slept in the car park at Kensington Town Hall for some time, I always had my standards and made sure that I slept in the higher quality areas and very rarely asking me, very rarely I could potentially have been part of those solutions and I could have cost the NHS a great deal. I would like to get one of the number crunchers to tot up just how much I’ve cost. But the human cost to me, and what it’s done to me, have been massive. Trapped in the revolving door I found it easier to be passive. I used to really love getting put in a psychiatric hospital, a private one that the NHS had a contract with, not far from here, because I got filled full of Valium and didn’t have to make any decisions and they had nice food and rock stars to talk to and Saudi Sheiks and stuff. They don’t have that contract anymore it’s shame. But yeah it was easier to be compliant there.
I'm sticking with my castle thing, I’m on a roll now. I found a great work, oubliette, it was almost like being disconnected from anything that I was before I became ill. And I was reporting on a budget of £28m running medical projects around the Chernobyl nuclear disaster. As a qualified Sovietologist I'm not saying how useful that is in these days of five year plans and vanguards but, anyway, those assets that we all bring, we’re all not just our illnesses, we’ve got a hell of a lot else we have other lives and also how we manage the life changing diagnosis. We are natural innovators because we have to be, there’s something about having to survive that brings up resources that you didn’t know you had. I didn’t know I was a first class shoplifter because I was self-medicating with alcohol, it very nearly killed me, and I learned to have to do things that I would not normally do. I'm not recommending this as a strategy but I'm just saying there are all sorts of skills and resilience because obviously I'm still here to tell the tale.
I presumed that my active life was over better but I got sucked into the world of patient public engagement, being identified really early on in the King’s Fund funnily enough, as being over-opinionated, they got me in to do debates and things which was brilliant, over ten years ago. This as you know can lead to consultation fatigue because a lot of it doesn’t tend to go anywhere as far as we’re concerned, it’s great to do that, it’s great to be a patient story and all of that stuff but it very rarely utilised all the skills that I had. There was a divide then between them and us even though it was an invisible divide, I’d often be the only person not paid round the table but offering by this time consultancy level input and the questionnaires oh my god, I’ve had my experience captured more than I’ve had very bad NHS curry. And when I was a bed-blocker, as they say, for a whole year, we had curry every day, that’s a lot of questionnaires.
So it’s great to do that but my goodness wouldn’t it be great if we actually did co-produce. Now we talk about co-production and very often we are talking about stuff in that middle part of the ladder. I read a great book called ‘No More Throwaway People’ by Professor Edgar Khan and it had an absolutely profound effect on me. I first heard there about co-production. The key words I’ve highlighted are ‘equal’ and ‘reciprocal’. If you are involving patients in your work right now can you truly describe it using those terms?
Okay the Marmite term of patient leader, I quite like it because it is very challenging, because the word ‘patient’ has a lot of passivity implied in it and the word ‘leader’ has the very opposite. If patients are to be involved as we increasingly are actually throughout the system, which includes strategic level, it’s helpful if we have the capacity and leadership qualities that staff will get to develop in numerous training courses and whatever, there’s actually very little for patients. But I like the idea because basically it challenges and it is all about the ultimate in collective leadership because very often we don’t have a place in the hierarchy and yet we can have leadership abilities in space. I would really challenge to consider myself a leader but I was lucky enough to find training in patient leadership run by the Centre for Patient Leadership that really really helped me and to prove a point to myself I managed to almost gate-crash the NHS Leadership Academy as the only patient leader to do so so far.
This is my graduation photograph from this year, I graduated with a post-graduate course qualification in healthcare leadership. This group is an example of the sort of thing that doesn’t happen enough. This group has myself, a patient, there’s frontline staff there, there’s a couple of managers there, the lady on the right is from the private sector and it’s right across the silos, it’s a rare example of that kind of thing in practice. We are all in our individual little boxes, all training usually and we were all affected by that mix. I actually modified my approach. I learned that I had been until that point really all about forcing staff to walk in my shoes as a long term patient. The bit I was missing was that I needed to know how to walk in their shoes.
The first thing when I started the course, on day one, these were mainly frontline staff, the Mary Seacole Programme. The first sensation I had was of fear, the level of fear in the room. They wanted to know how safe they were to talk openly in the training and all of that. I needed to know that these are the realities that staff face. I also was amazed at how little support many of them had. They were really overworked anyway, they were doing these courses in their spare time and it made me realise that actually I had more power as a patient than I thought I had. I had the luxury of being able to say openly what I thought. I didn’t have to look behind my back the whole time, I had the luxury of being able to look out and the time in which to do that. And I thought how powerful we are as a potential ally for staff who want to work in new ways but their organisations factor against them doing that. That is one of the them and us barriers that can be really challenged if there are more opportunities for us to learn and develop together as equals.
I did a quality improvement fellowship which took me to Jean Scherping, I learned all of the various methods of how to run quality improvement projects myself, I did so as an absolute equal with medics, people from public health and social care, all doing the same fellowship together for one the collaborative for leadership and applied health research and care here in North West London. That’s the kind of thing I would advocate really happens much more often. And we will discover that a lot of the fear is a shared experience. I found it really a challenge to come out of that patient box myself. It was pretty crappy in there but I got used to it, it was good, in a way, not to have to make decisions for myself. This is what happens when there’s a lot of fear around, the boxes petrify into stone and they become silos, and we’re all familiar with them.
If we’ve been saying this stuff since 1954 and probably well before it as well it’s time to get a bit radical and a bit probably strong. So I would recommend this approach that Banksy advocates, and again I could well be the only one ever to use such language in the King’s Fund (laughter).
And ultimately it is all about bridges. No have you thought about the role that patients like myself potentially can form in helping you build those bridges? Because we genuinely are the outsiders on the inside or the insiders on the outside. I’m helping a group of experts design a new independent patient safety investigation service at the moment and we’re with James Titcombe who was with you earlier and we’re working in a completely different way, even the civil servants have said, “I never get to work like this normally where it’s okay to access my emotions” and it’s working and already the level of trust in what we’re doing has increased because of the diversity of people they’ve got inputting into this. So more of this please. We need to co-produce properly, co-define, co-design and co-deliver, we can only do that with enough people with the capacity and confidence like myself as patients to participate meaningfully at those strategic levels and that needs investment in the training so that we can all be part of that bridge building exercise that Don introduced us to in the first presentation.
That’s me, thank you.