Alison Cameron: Beyond data sets - patients as partners in improvement

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  • Posted:Thursday 21 April 2016

Alison Cameron discusses the importance of viewing patients as partners in improving services.

This presentation was recorded at our event, How to use patient feedback more effectively to improve services, on 21 April 2016.


I've got to start with a confession, it’s 18 years since I was diagnosed with post-traumatic stress disorder and with that came consequences of alcoholism, homelessness, etcetera and I had my last inpatient admission one year ago, so it’s still very current, I'm still a user of all those services – no longer homeless you’ll be glad to know. I have become something of a feedback phobe. It can tend to give me indigestion because you can imagine how much stuff I have generated in that time. I remember when they were still using paper files. I used to see them kind of lugging this thing round on a trolley and it wasn't quite as bad as this but it was sort of getting there, so call it my version of War and Peace but with more emphasis on the War bits I have to say. So I have to out myself, I do apologise if there is anyone here and I've besmirched your hospital or service during this time. I'm one of those that can be referred to as a frequent flyer.  I've also heard another one, heart sink patients, you know the ones that quite rightly, when we turn up yet again, your heart sinks.  So I find all this really therapeutic, sort of apologising in front of you all.

So this became my CV really, you know, this is only approximate because I don’t remember an awful lot of it – which is probably just as well. That's a large chunk of my life, that's 18 years of my life, I only started working again about 18 months ago. That's a long, hard journey to put it in kind of X-factor terms. It represents a change in my identity, all of those things that when I speak to other people with long-term health conditions – and they may be completely different diagnoses than my own – we all talk about that stuff, you know, having to leave who we are at the door and return for these various diagnostic labels. I have several, I'm a real label queen, I quite like collecting, so obviously I'm the ideal tourist to be on this platform.  It’s a huge chunk of my life but it’s also a huge amount of insight.  I had a professional background before I became ill, I ran international projects around the area affected by fallout from the Chernobyl so and so – it will be the thirtieth anniversary of Chernobyl on the twenty-sixth, next week – you know so I had these skills still and I was able to start observing stuff, but the extent to which I was listened to and able to put that to use is up for debate.

This is what Paul Bate said some time ago – he’s one of the architects of experienced-based co-design which is something I really believe in. We have, as been said earlier, we've got more ways than ever of collating feedback, we've got interviews, surveys, we've got handheld devices, we've got all sorts of stuff. There is still a lack of consistency in how that is used clearly. We've got so much potential now that technology makes possible but we've also got the real potential that could come by really reframing the role of the patient so that we are seeing less as data sets – I image myself plopping on a slide and getting examined – so that we are not just measuring for measurement’s sake, but perhaps see us more as partners in defining, designing and delivering what happens as a result of all that feedback.  Co-design, I'm not sure about patient centred because sometimes we talk about putting the patient at the centre and I don’t really particularly like being put anywhere.

If the conditions are right, I’ll tend to be there of my own volition, but this is a really good example of co-production, check out the Lambeth Living World Collaborative. There is a continuum of course and it’s been represented in various times, various forms, it’s an adaptation of Einstein Ladder of Engagement, and this is about power shift really. There is an awful lot of stuff goes on in that middle section. Now I'm not saying that the top of the ladder here is absolutely what we have to be doing every time, it’s really important to get those other levels right as well, so these days I tend to sort of view it more like a mountain and there is a bedrock and the bedrock is being effective in how you inform people and then being effective in house you listen to the patient voice and how you listen to feedback and use it, but just to be aware that potentially there is further you can go. If you are willing to give it a try, there is much further you can go with that.  I’ll illustrate just these three stages and what this is like because I've noticed it applies not just to how the power shifted in my own interaction with various professionals that have had the misfortune of having me in front of them over the years, but it’s also the same stage is applied when I chose as many of the amazing patient representatives and so on who are here today have probably also done, those of us who have chosen to engage on a collecting level as well, so that we don’t just want to get power back in our care but we are really keen to be part of seeing that shift things on a wider level.

This is more or less what it felt like at those lower stages. I was quite institutionalised, I had long-term stays in psychiatric units, and if you translate that kind of thing, I had been a professional, I had run these international kind of medical and scientific projects, but I got disconnected from all of that and not because of my illness I have to say, that post-traumatic stress disorder does not necessarily do this, it was the long-term experience of being on a psychiatric ward for maybe a year at a time because I was famously a bed blocker, I will use that pejorative and unhelpful term so that you know it’s not just these little ladies sitting waiting for their care plan, it’s all sorts of people that find themselves what they politely call delayed discharge. If you can imagine, I spent a year occupying a bed on an acute mental health unit because of housing, that cost more per night than the Dorchester and I used to come here, I used to come here with – I had my suit next to my bed, used to take off my Guantanamo Bay pyjamas, put my jacket on so I looked the part, and I used to come to the King’s fund and take part in events because I was already a patient rep with MIND locally, and I used to point that out, I used to say I am currently on an acute mental health unit. That used to bring the house down, it sure did, and I said not only that, you lot are paying for it, if you are tax payers you are paying for it, and this is what happens you see if you translate just seeing patients as problems to be fixed, like Girder Cohen said in 1965, and what’s wrong with hospitals, patients are sick of being treated like cracked flowerpots in for repair.  You are wasting a whole vast raft of resource that the NHS could well do with, utilising it more effectively than it does.

So I got involved because I started to make observations about what needed to change. I noticed that the substance misuse people – I was too mad for the substance misuse lot and I was too drunk for the mental health lot – and they weren’t talking to each other so I was declining down and down and down and then somewhere on a different planet altogether was housing. So I started to make these observations, so I got kind of sucked in to the world of patient and public involvement which I would wouldn’t I, I'm a white middle class university educated, you know, I was the sort you wanted on your committees – apart from when I was in relapse and you wouldn’t be inviting me anywhere I can assure you – so I got used to being “consulted”. Some of that was meaningful, some of it not so meaningful. I had done some of this stuff in my old job, I knew what it was like to feel like I was just keeping the plate spinning and I would have found the idea of having to interact with the likes of me deeply challenging, I really would have, so I have to out myself as that, that I would have been very reluctant, it scared the shit out of me let’s be honest.  With a result, every trick in the book, I've done them so I can spot them and I can sense a fake consultation a mile off and the decisions have already been made and you are having to tick that box.  I would like to add this to my list of diagnosis, definitely consultation fatigue, I'm so allergic now to feedback forms.  On a good day I will make origami out of them.  I realise this is very bad behaviour but I have to just let you know that this is why.

The reason why for me is that I very rarely was informed of any changes as a result of what was going on. I really wanted to be part of changing things, I really wanted to at least have those experiences mean something, and sitting on committees as a rep, very often it was fine, you know, up to a point I was certainly there being the patient voice if you like, but it wasn't utilising all my other skills and assets. I remember once a committee having to be – actually it was in this building – it was the London Development Centre for Mental Health – they were going to stop a meeting from happening because there was no one thee to write minutes. Now I had run a session at the Rio Earth Summit but they would not have occurred that a patient would actually have some other skills other than their expertise by experience they like to call this, you know, the insight that we have form having lived that stuff is invaluable and it’s absolutely necessary but it’s not the whole story necessarily.

I worry about the obsession with this Trip Advisor style thing, you know, would I recommend my mental health unit? Actually I would recommend that they don’t go there, they don’t end up having to be in there, so you know I'm not sure. Now I've taken a bit of a risk here with this story – I found this in the Guardian though it might not be true so bear in mind – the NHS wants your feedback. I know this because they ask for it. This was a couple – Jane was 12 weeks pregnant and she had real fantastic treatment, she thought she might be having a miscarriage and she ended up in A & E and she was treated beautifully, very compassionately and she passed that feedback on directly to those people who looked after her.  She miscarried in the taxi on the way back home and it says here “The next day Jane received an automated text message; it read “we would like you to think about your recent experience in the A & E Department.  How likely are you to recommend our etcetera, etcetera, etcetera, please reply 1 for extremely likely...”” you know, we know that, we've seen that stuff, then they started again two days later and she had just been for a follow up scan and that activated that system again.  They expressed their feelings to the staff at the time, they say here – this is the partner – he says “that's the place for feedback.  Face to face sincere thoughts and feelings expressed from one human to another.  I would make the following plea.  We come to you in the darkest moments of our lives.  You see us through them whatever the outcome and then you move on to the next patient.  You do this because that's what the NHS is for and it is a beautiful institution.  In the vast majority of cases we go to the nearest, most convenient hospital which renders utterly redundant the motion of recommending a facility as if it were a restaurant or a B&B.  Please get rid of the gimmicks, the faux concerned and impersonal feedback look and the specious choice pyridine.”  Now, you know, this is obviously somebody that is in a lot of pain, but it just worries me that we can become so obsessed with this collation of stuff, that we forget the human beings that are involved in it.

Then I saw this one as well. Connor Russell is a great proponent of assets based community development- if you haven’t looked him up, please do – this is a graphic facilitation from something he was involved in and it talks here about mapping our misery and I have to say I really identify with that. The good news, there is good stuff happening, changes definitely afoot. It’s not consistent but it is happening. One example I'm really proud of is that when I was still at a relatively early stage in my own recovery, I was able to become a fellow of collaboration for leadership and applied health research and care, otherwise known as CLAHRC in Northwest London, and there I started to come into recovery around my resistance of data collation and all that stuff because I had to go and learn about it.  There is young GPs, there is a paediatrician there, there is a couple of patient leaders, there is a commissioner from social care, all working and learning about quality improvement together, as equals, and that included being forced into process mapping and all of those things I can actually do, and while I'm still pretty hopeless at it, I now know where to use it and how to use it effectively and that sort of thing doesn’t happen often enough, it’s like a capacity building for people like myself, to be more effective as partners.  It’s not enough just to slot us in.

So these are all the various people that were there. These are the good things. I'm not going to yitter on about all of them because you can look them up. Jönköping, it’s an example that has been around for a while but I really love it because it was just a guy sitting having his dialysis and he asked a nurse – he was from an engineering background I think – he said “why can't you teach me ...” (he was noticing how labour intensive it all was) “... why can't you teach me to do that myself?” and I've met her, I met her in the Jönköping, she took that on and it led to the whole redesign of that service they've got, this amazing self-dialysis unit, that's a really good one to look up. The Oxleas experienced based co-design was fantastic, that's in a mental health setting, so called hard to reach like myself, very, very effective. Praise project involving hospital volunteers to interview people about patient safety because lo and behold, they find that patients who have gone through some sort of unpleasant experience – or whatever euphemism you want to use – they are much more likely to trust someone from a patient background coming to speak to them, so they've trained a whole team of hospital volunteers to go and collate that stuff. I am really looking forward to seeing how different the results are if they are going to be different from involving patients in that way.

I chair Imperial College Health Partner’s Patient Safety Champion Network. They are a really impressive bunch, they are all interested. For whatever reason some of them have experienced harm but they are people that actually want to see that really result in some change and we are not just involving them in data, they are going to be involved in co-design and we are creating a programme to train them up. We've got an ex-journalist, we've got someone from an organisational development background, more than expertise by experience. Look at hack technology.  NHS horizons, there was a fantastic hack event, 24 hour event, done with CLIC Sargent where we had young people with cancer and a whole bunch of other people, carers, clinicians, you name it, all working together to come up with the questions to begin with and then together work on the answers and a lot of the stuff that came up that day as ideas has been introduced by CLIC Sargent is now in practice.  We can be used in so many ways.  One way you might wish to consider is make sure you are actually asking relevant questions, it’s really important to get that right, do they mean anything to patients, are you checking that out to being with and this is basically why we do it and a quote from the 16th century, don’t forget the story, it’s also staff stories, not just patients, and this is the cheesy bit really, in conclusion, Rob Webster last week of the NHS Confederation said this; “We waste the assets of people every day in the NHS”. He was referring both to patients and to staff. Let’s start to challenge that. Thank you.


Lisa Rodrigues

Writer, coach, mental health campaigner,
Comment date
11 May 2016
Alison is a free thinker and something of a genius. She is also more courageous than anyone possibly realises. Every time she shares her thoughts, she turns my thinking on its head in some way. And here she has done it again. I hope The King's Fund will continue to make space for free thinkers. It's what independent think tanks are for.

Janet Dawe

5 years into MH service-user involvement,
The Mix MK Drop-in and many other roles in Milton Keynes
Comment date
16 July 2016
What an inspiring woman! Our mental health services need to invest in
the talents and experiences of individuals, both as those with mental health service-user experience as well as our life experience outside the NHS. It is happening already, but let's keep up the momentum and never be discouraged on this journey by any hindrances and delays. Progress has been made----even more can and will take place. Everyone has value whoever they are and can make a real
difference. Heartfelt encouragement is the key.

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