Transcript from the Edge Talk on the 7 August 2015

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SPEAKER:
Good morning, everybody, welcome to Edge Talks. We have an exciting session today with
Alison Cameron.
There are several ways you can join our session today, we have got the chat room, so make use
of that. You can also join via Twitter using the hash tag #EdgeTalks.
A reminder on Wednesday at 4 PM, we will be having a Twitter chat following the session. As I
said, the session today, we have got Alison and as normal we will be running chat room monitor,
and this session will be Dom.
And Carol will be our Twitter monitor. Today we have two other colleagues joining us. We have
Rachel and Becky who we will be introducing later. But it is great they can join us today. If we're
all ready, I shall handover to Alison. I shall quickly turn the computer to Alison and we're ready to
go.
ALISON CAMERON:
Thank you. Gosh, the wonders of technology. This is extremely out of my comfort zone, just
letting you know that. What am I going to talk about, let's think.
I want to talk about one of the themes of the Edge, really. I'm sure you're all subscribers. About
change agents. Who, in fact, are the change agents?
When we think about change agents, are we still tending to look within organisations, within our
organisation? What about those who are not part of the official hierarchy, they may not even
have a job title.
Those outsiders who are very interested in the work we do, but are not necessarily being paid to
do it. I am, of course, talking about… Well, I use the word patients for now.
Are we still seeing patients as needs to be met by others, or potentially as part of the solution?
This is what I'm going to be talking about. How I, myself, have managed to move from a passive
patient state, to what I would dare to call patient leader.
And how challenging this has been. It has been bold coming out of boxes, and that applies to me
personally as well. The caveat would be, I am talking generally, within a healthcare context.
The word "patient" is for that reason. My personal experience does come largely from an
extended experience of having a health condition.
So, patients, I mean those of us who have had a life changing, extended interaction with
healthcare and social care systems.
I am not necessarily referring to people who visited their GP to have a boil lanced, for example. I
am sure that needs to be a good experience as well, but when I hear, "We are all patients," I
want you to bear in mind that is yes and no.

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I really hope we don't get side-tracked on the semantics. What I might do is not use the word at
all. I might just use the word "blob" and you can put in whichever word you’re most comfortable
with.
I quite like blob myself. With the time we’ve got today, I want to talk about and introduce the idea
of us blobs less as passive recipients of care, and more as active partners in the leadership task
itself.
When we think of change agents in health care, I would like us to question the idea that it is
solely limited to those of us with formal positions. I know it is difficult.
Very often, those with the most freedom to work in new and radical ways are, in fact, the
outsiders inside. We have more power to look outwards because we don't have to look up or
behind our backs all the time, necessarily.
Right. Thank you. I am not exactly technologically minded, I cannot even say the word, never
mind to do it!
This is an adaptation of the ladder of engagement, of which I'm sure a lot of people are familiar. It
is a version I like which was put together by the economic foundation because it mentions
coproduction.
What I have added here, I have come through my own experience, is a different level of blob
engagement from passive voice up to leadership. A lot of these levels are essential, and they are
each as valid as the others. It is not to say I'm denigrating any of the activities that go on under
patient voice, where you invite people into focus groups and so on.
That stuff needs to go on, and needs to be done well and meaningfully. It is just to get over the
idea that, actually, we can all go together if the conditions are right for all of us.
It gets more challenging as the power shifts, and we go up the ladder. You can go up and down,
it doesn't have to be... Just depending on the nature of the work you are doing.
There is not going to be much by way of theory, apart from this, in this presentation, because it is
not really my style. So, what I really hope to do is get over that it is not really about models.
There are rafts of stuff online about this.
This is about hopefully getting over the mind-set. It is actually about mind-sets rather than
models. If you get that right first, you can go on to develop models that stand a chance of
working.
So, I am going to present my own… I do love talking about myself, and this is one hell of an
audience, I cannot see anyone, I have no idea who is out there. Anyway, I will talk to my
therapist later, I have a session but right after just in case.

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They're in the next room! So, yeah, I'm going to present myself really as a case study. As I say, it
is going to be roughly on the subject of boxes.
I'm going to talk about that throughout. Icannot get the slides in the right direction, there we go.
The question, "Who am I?"
Well, gosh, I cannot work this. Back… No, that is fine.
Sorry about this, I'm technically inept, nerve wracking as well, this is. Thank you. They knew who
I was, I was defined by my job title.
I had a pretty high-powered, on the face of it, career. But it was a bullying culture. It was very
hierarchical, very political, small and large P. And I cared very deeply about what I was doing.
It was international development with a lot of emphasis on humanitarian aid and cultural links etc.
It was about partnerships and collaboration, really.
I care deeply about what I was doing, but the culture in my organisation factored against me
being able to do that to the best of my ability. That is not a nice place to be in, really.
One of the reasons I talk about this now, the seeds of thinking that I now utilise in the work I now
do, it started then. It didn't start with illness. We blobs have had a life outside of our diagnosis,
and mine happened to be this work. I am a Russian graduate, I was sent early on to work on
projects around the Chernobyl nuclear disaster which happened in 1986. From 1990, I was sent
into the zone to find out ways in which we, with the power and the money, could help those
victims.
But when I went to those communities, I did not see victims, I saw people starting to get together.
The Soviet Union was coming to an end, and they were starting to form their own solutions to
their own problems.
The resources were there, and we were part of negating those resources. The images of the
time, these are quite distressing, of course, but their aim was to raise money.
It was all very well-meaning, these are not positive images. These don't reflect the people I got to
know in those areas. There we have another example.
Just to show you what I mean, here's a bit of a contrast. This is Maria Sharapova. Her parents
were living in the city I worked in in the Republic of Belarus.
70% of the radiation from Chernobyl fell in Belarus, 70% of that in that region. Sharapova was
born in 1987, one year after the disaster.
Her parents had decided to flee to the East, to escape from the unknown dangers of the
radiation. If anyone is a Chernobyl child, Maria Sharapova is and she does not fit the victim
image.

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I read a report from an international development agency that one of the effects of a lot of the
humanitarian aid at that time was to create passivity, a culture of people not having faith in their
own abilities.
I really, really identify with this. In fact, it was the same in the Ukraine. Ukrainians are not
passive. We know that, here are people protesting.
And this is a lovely image of the piano player in front of a riot shield. These are depicting people
as helpless, defenceless and victims, and it is not necessarily doing them any favours.
I was to realise myself that my thinking was right, I entered my own exclusion zone. If I ever write
a book, I think I will call it this. This was a Chernobyl zone in the Ukraine, I think.
I became ill myself, working on one of my projects in Belarus, not connected with Chernobyl. My
colleagues were killed, it was an environment project, and I was required to sort out the
repatriation of bodies to this country.
I was already very stressed, I understand about burnout that happens in the NHS settings
because I was there myself.
And the thing that pushed me over the edge was being expected to remain silent about what
actually happened to my colleagues. I was told I had an overdeveloped commitment to honesty.
And that didn't do me any favours. So, ultimately, I became very ill. I was so devoted to my work,
that I carried on working well beyond the time when it was healthy for me to do so.
And I did that by medicating with alcohol, which ultimately nearly killed me. I kind of fell off the
edge of the cliff, I think I was teetering on the edge for a while anyway! This was the thing, not
anything horrific, the people in Belarus got together, we had a trusting relationship with the
people there.
What they did to get the bodies back to this country was amazing. And I remain really grateful to
all of them. It was about not being able to talk about it. It was one of the worst consequences for
me.
I was diagnosed with post-traumatic stress, these are some of the new labels that I acquired. I
got rid of my job title, and I got these instead.
I am rather fond of maelstrom of mayhem. This was a young doctor in University College
Hospital. I was, by this time, homeless. I was completely zonked out of my mind by alcohol which
I would either buy or steal if I had to.
It was not a very nice time, I was sleeping in a car park, I was sleeping in the car park of
Kensington Town Hall which proved I always had some standards. I only dossed in the posh
areas of London.

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I was in hospital so often, I was on a two-week loop. I had no stable to live, it was totally unsafe, I
had these terrible symptoms of post-traumatic stress disorder which I was blanking out with
alcohol.
And then blanking out the reality that it had all gone, my job had gone, my home had gone,
everything had gone and I thought my entire identity had gone.
I reckon I had… This is my role of dishonour. It could be different because I do remember much
about it. There were about 100 acute hospital admissions. If I had been into any of your
hospitals, anyone here joining in, I do apologise for my conduct.
I'm making up for it now, hopefully. You know, that is costing a lot, to me as a human being, and
costing a lot to the system. And there we have it. I would like to get some bean counting person
to tot up how much that cost.
I got through it by, either fragmenting myself, or just becoming, maintaining passivity. To save
energy, to stay in the revolving doors. That way save some energy.
I certainly didn't need my brain any more. I like this cartoon from the United States. Thus, I
deliberately made the hospital green.
I had very little interaction with the human race when on my medication. If you asked me what
my opinion was, I just thought you were having a laugh and would have told you to shove it up
your kilt. I was non-compliant, or obnoxious is probably more accurate. It was like, "Which way is
up". I'm amazed, it is bad enough if you have clarity in your mind to cope with things such as
housing, benefits. Services thought I was too mad for them. The mental health services thought
because of the extent of my drinking that I wasn't appropriate for them.
Meanwhile, social services and housing were operating on another planet. For someone in a
frozen state such as myself, there was a lot of luck involved in my survival. I certainly lost my
identity. When I speak to people with a large range of mental health conditions that they have to
come to terms with, one thing that seems to unite all of us is the impact of the identity loss. I'm
not sure that enough is done, or it wasn't in those days, to help us with that.
The people that we thought… Just think if you are in a job and you roughly know where you are
going to go with your career and everything else and you are in a pay grade and you stay around
long enough that this will happen that, just imagine if all that was swept away. That is a very
difficult thing to have to deal with for anybody.
Certainly any abilities I had, anything about capabilities, anything that wasn't about needs to be
met or behaviours to contain or any of those things… Anything that was profound ability and
strengths, they were probably still there but cryogenically suspended. It was in a different room
and I didn't have the key to the group. Somebody else had the key. I was yet to find out who that
person was.

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A lot of the care was fantastic, it kept me safe and that was all you could do with me in the state I
was in. I got dispatched to a care building, it is hard to be in a building in Tottenham. Some
horrific things happened to me, because I was very vulnerable. I was being wrapped in bubble
wrap and I did not have to contemplate a future. I assumed my future would be kept safe, being
kept safe from myself, really. Fundamentally.
It was, in a way, a comfort zone. There was a past, psychiatric hospital with rock stars, and the
NHS had a contract in there. I used against other on occasion, it was great because I got filled
full of Valium. There were nice chairs. I didn't have to think about anything, it was fantastic. The
problem with the comfort zones is they can look fantastic but rarely does anything grow there.
This time, of course, I would have assumed I was being buried but I was being planted.
Characteristic of what I experienced is that I met some amazing people along the way, some of
them professional, some of them blobs and they said or did the right thing at the right time, they
were in the right place when I was ready to hear it.
One was Doctor Rachel Perkins, who was a consultant psychologist, local psychologist who was
diagnosed bipolar and rather than it being the end of her life, her active life, it's really advanced
her work and added and became an asset. I heard her speak, I bumped into her by chance at a
mental health charity meeting in my borough. There in the toilets I was chatting to a very nice
lady, as you do, and she was asking about myself and I told her my observations about the
disconnect between mental health services and whatever else. I didn't realise the chairman of a
central North London foundation trust at that time. She got to me and opened the door into the
fantastic world of services/patient involvement.
It was useful for me because it gave me routine and made me feel I was doing something of use.
It is not something I would be criticising in any way, but if after the first two years nothing
changes, it can get quite frustrating.
I filled in questionnaires, I did focus groups and it was incredibly repetitive. The other thing, very
rarely used was the range of… My skills were starting to come back, as I was recovering and
managing to deal with the alcohol side of things, I was developing more clarity. A sense of my
own worth started to return and a lot of that activity about ticking boxes just wasn't utilising… It
felt really frustrating and I wanted to ask people around the table who were all being paid and I
was like, "What is it about your time that makes it valued in that way, whereas mine is not
valued?"
Could they answer the question of why it was valued in a different way? I knew the answer, but
there is no real reason why people like what myself shouldn't be valued equally if that is what we
say we are doing. It is what we ought to be doing.
I get parachuted in very often, being a patient story. There is fantastic work done around patient
stories. Don't get me wrong, it is essential. Not only patient stories but staff stories. All of our
stories are important. But there was an idea that it is part of the entertainment after the meeting,
after being trained and traumatised telling my story which I suppose I'm doing now, that I was
then going to be patted on the head and given a biscuit and a cup of tea and the professionals
would get on and do the job of the professional. That's becoming increasingly frustrating for me.

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I would add to my list of diagnostic labels, think I have got about four, I would add consultations.
It was very repetitive. You would get different bits of the organisation doing a focus group on
exactly the same thing. I would see the same people there and they would repeat the same
thing. We were preening up on Tesco vouchers, a lot of us, which was very helpful. But it was a
bit wasteful.
The thing is if it's really insane, because the definition of insanity is doing the same thing over
again and expecting different results. The overall effect on me was I was getting angry, because I
had no way of constructively challenging my feeling of my experiences I had, but had actively
harmed me. I wanted to see some changes, but I had no real ability to be constructive with that. I
didn't know how to. It would just take some interaction around the table at a meeting, start
reflecting some of the more toxic interaction for care professionals for it to trigger off, the territory
thing. It caused the professionals to become defensive, rightly so - I would too. This is what I
think I was like.
The axe here. This is what happens when engagement is not thought through and is added on to
what is happening already and doesn't actually lead to any change. The people who are drafted
and parachuted in to get involved either become part of all that, which happens in more of the
more entrenched patient reps, and we get angry and sit about in car parks eating food. There is
no constructive thing to come out of it. No relationships are formed or dialogue is done. It is
about combat. It is just not helpful to anyone.
I knew I wanted revolution, but I'm afraid it was in the Napoleonic variety. That was how I thought
it would happen, and I wanted instant results and if it was by violent struggle, all the better. I am
really being honest about what it must have been like as a professional trying to engage with me
in a meeting in this period. Not pleasant.
Another lightbulb moment, because I know there’s something around the engagement mark, but
there was something missing. I was getting so angry at this time that it was time I was governor
of a mental health trust and I was getting so angry. I had one-woman stands in the mental health
unit on behalf of patients. I would not move until I got my own way. I am like a camel, I didn't
need to go to the toilet. I said I could stand there for days. So I told them to work it out. It was
certainly producing results, if they just did what I wanted to get rid of me.
There were several people who say the people I care for, I saved their life, but I ended up
relapsing myself. I helped patient X and I would relapse and end up in hospital with the same
patient. It was toxic. I relapsed on alcohol. I ended up in rehab in Plymouth, which really helped
me. I was catching up on some reading and I was given a book by an angry carer, the angry
carer to my angry patient. He had read this book, ‘No More Throw-away People’ by Edgar S.
Cahn.
He was a civil rights lawyer in the United States in the 60s. He had worked for Robert Kennedy
as a speechwriter. He did amazing work for Native Americans around justice. He was a fantastic,
hellraising lawyer. He had a massive heart attack at the age of 46 and had that same identity
loss that I experienced, he talked about it.

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What he said in the book… He is still very active. I get this, I absolutely get his feelings around it.
And he sat in the hospital thinking about, he had all the care that he required, he was being well
looked after. But he wanted to be someone who contributed to society. This is an article I wrote
about this for a housing organisation and they chose this image to describe my experience.
Edgar wanted to find a way for people labelled throwaway - the virtue of being the other, being in
the criminal justice system, having a disability through age - so they could at least contribute and
have assets recognised and utilised, not necessarily using money.
That would be a way of enabling coproduction and making that happen in practice. He created
the first time banks, a form of exchange of assets of individual and random organisations where
a person is valued in the same way as a job title in the hierarchy. It is about real value. The thing
that had been missing from my interactions with the health care system.
I didn't grasp it right away but I wanted to see it in practice. When I left rehab I'd joined a time
bank at a centre in Camden in central London, only for homeless people. I knew that Edgar was
an adviser there. I went there and I did the shift of a recovery worker. I got paid in time bank
credits, one hour was worth one time bank credit. I could spend it on a whole range of stuff that
was available in that time back then, but I chose to spend it on accredited training, which would
give me a key to a future, an active future.
It felt different than everything I had done before, it was not volunteering but someone who gave
me something in my hand that showed I had worth. They believe in you, I owe Edgar gratitude.
I've got a team of IT elves in the room, they will probably put up the link to my article from the
Edge. Radical results, there you go I will hand over. You are all panicking now!
These are the core principles, really. It is about reciprocity, and now that I am sober, I can say
the word "reciprocity".
Look at your engagement, look at the patient services, is it really a two-way street? In what way
is it a two-way street? Ask yourself that question.
It is not necessarily about money, I'm not advocating we get paid each and every time we do
activity. Some of the best ways I have been repaid for what I have done is not in money, I did a
fellowship with an organisation that you'll be hearing about from Rachel later.
That opportunity to learn and develop and actually get myself a career, which has now
happened, that was a fantastic way of repaying my efforts. It is not tokenistic, and it is a two-way
thing.
This is what Edgar said about the core economy, which is just that which exists the community,
whether it is these bonds that we have, or where people help each other out.
Without having an asset based immunity development approach, there is not much point in going
for coproduction, purely from a service point of view. It needs to be built on something.
Empowerment for people like myself who have been long-term throwaways, does not just
happen by accident. There needs to be a lot of, a lot of work done for a lot of us to reconnect with

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any skills we may have had. It is not enough to say, "Now we are doing coproduction, and you
are going to coproduce."
You could ask me so that's very wrong, I wouldn't have had a clue. I was lucky enough to find my
way to training.
There is not much training out there for people who, like myself, who are patient service users,
but there was some fantastic training available that I found in my area.
And it was run, actually, Rachel is speaking later with my mentor on this training. And the other
two facilitators have experience of life changing. It was another turning point for me which
enabled me to move on from the patient voice stuff, to patient leadership. A lot of the barriers to
me doing that were not in the system. A lot of the barriers to me doing that were internal ones.
They were due to feeling that, genuinely, I did not have the right to be sitting round the table with
the people with the job badges on.
That is something I needed to do a lot of work around. I'm a person who was making
recommendations on a budget of 28 million, and I was reduced to being someone who could not
make decisions between bottles of shampoo in the shop.
If that can happen to me, it is an issue, so it is worth considering investing in training and
development, if you really want to have the kind of equal relationship with your patient/service
users.
Then it is worth looking at. Patients as leaders is quite a controversial term. Not everyone is
happy with that, it depends on what you mean by leadership. This is my thought on what
leadership is about. Rather than it being about position, I don't see any reason why that shouldn't
refer to people who are not necessarily in the hierarchy as well.
But who are working towards change in our health care system. So, we're more than experts by
experience, for sure. Lived experience is essential and add that unique factor that only someone
who has been through that stuff can know about.
But it is not all about that, the term ‘expert by experience’ is a little limiting. I did this rather
dullsville diagram, basically, this is the theory according to me.
The training, development, asset building on one side. Lived experience on the other, and the
leadership being that bit in the middle.
And I managed to get some Monty Python in there. Patient as leader, I see it as an inside job. In
order to put the axe down, and that can be really difficult. A lot of us are good and angry about
our experiences.
A lot of us have experienced harm, and it can be difficult. We're not just talking about jobs, we're
talking life experience. The Centre for Patient Leadership, these were the guys who did the

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training course. They defined the patient leader as such.
Sorry, my English is deteriorating! Now, there are loads of them, it looks like they bring out
another one every week. New buzzwords. But they all say this stuff. This is a slightly out of date
one. It is all about self-belief, self-awareness, it is about self-leadership.
There is no reason why we should not aspire to having quality. The current one, this is the NHS
leadership model. Again, this is the same thing. It is not about position. We know in reality when
they talk about leader, let's face it, they're talking about the manager. But according to the
models from which they claim to be operating, this is how they are viewing it.
It will take time to filter through, I think, but this is what I believe in. And hopefully it applies to me
as well. I needed to prove this, and I needed to prove it to myself more than anything else. In
that, I still have massive imposter-itis, and I want to be patient box because it is a lot less scary.
Due to a Twitter rant… People know me on Twitter, I ranted at the NHS leadership Academy.
And it serves me right because they called my bluff. I pointed out that they're lovely, lovely
leadership programmes were not open to everybody.
So they said, all right, do it. We will give you a place. So I did this, I did the Mary Seacole
program. It was difficult, I did not believe I had anything to contribute, I hadn't written anything for
a long time.
But it was such a valuable experience. I learned about the realities of what healthcare
professionals were facing. These were mainly… I don't like the word frontline, but they were
mainly frontline, not top of the tree people, it was the workers we were talking about.
They were amazing, nurses, all sorts of people. And we all worked and learned together. First of
all, I could sense the level of fear among them, is what we say you're going to go any further?
And the pressure, the pressure of the job and having to do this course as well, on top of
everything else. I realised that actually, I was in a better position than them.
I had more freedom to speak out, I didn't have to report to anybody to justify being on this
course, and I was damn well going to pass it, if it was the last thing I did.
And I did, I managed to get equivocation and healthcare leadership, and I modified my approach.
I modified my approach because it was all about expecting professionals to walk in my shoes.
And I still think that is a really good exercise to do.
One thing I was failing to do was consider walking in the shoes of the professionals. And then
discovering how many of the fears and the resistance and everything else was a shared
experience, that I felt it as well.
And having a space that was safe enough for all of us to start exploring that stuff is really, really
important. I really hope I will be pushing the door of places like this open for others, it is not just

11. 11
about me.
I want this to be the norm, not the exception. These people who are in study groups with me said
it was the most powerful thing to actually be learning and developing with people labelled
"patient" for whatever reason, as equals.
These things don't usually happen, a lot of training is on for professionals, but it happens in
silos.
We need to be concentrating, I think, on developing shared spaces so we can come up with
shared solutions for these problems. I was ranting.
Time for some literature, I think. What gets in the way is of course fear. I have had a lot of
resistance to my ideas from the so-called patient's side as well.
From people who are quite happy in the traditional patient-public involvement role. Because it is
about change, it is about blurring boundaries. Boundaries are there to keep us safe all the time.
Any blurring is going to feel a little bit edgy. When you have bunkers, when you have defence of
bunkers, they become silos.
I did this myself, I was a public servant. Everything I accused, I have done in spades myself. I
would have found someone like me extremely challenging.
So, I get it, because I have been there. Nowadays, thanks to all of these opportunities, the work I
have done with (unknown term), which hopefully Rachel will mention in a bit.
Walking more in professional's shoes, and understanding the reality of the situation has given me
the belief that it is not so much about bombing the silos.
As much as I really quite enjoy some of that stuff. I do like chaining myself to railings. It is
probably going to be more likely if change is gradual. It is about planting seeds rather than
Semtex.
It is about different relationships, different conversations, Ieven have
Ghandi in this. He talks about revolution, not about seizing power, but transformation of
relationships.
That is the key, it is about sharing solutions. It is about proper use of assets. And dialogue. About
genuine, authentic dialogue in a space that is safe enough to do so.
It is not about handing over power. It is not about already powerless professionals feeling they
have got to be drained of yet more power.
It is about strengthening the power base. Strengthening the power base together, so there is
more of it to go around.

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It is like admitting we don't have the whole picture, I don't have the whole picture. We all have
important bits of it. If we bring all of that together, we have a chance of getting somewhere. That
is enough about me, I reckon.
I think it is about time I involve someone else, I don’t want anyone to think it is just about me. I
will bring in some colleagues who have had the misfortune of working with me over an extended
period of time. We have been through good and bad together. They should be around to join us. I
have two colleagues there. I was going to go to Rachel first.
This is Rachel. Rachel, hello. Ground control to Major Rachel. Welcome, thank you so much for
coming along. As I said, I don't know who we have joining us today. There may be people from
overseas who might not have heard of CLAHRC, can you imagine? If you could just introduce
yourself - one of those elevator pitches you have been forcing me to do for some time now - if
you'd like to tell us a bit about your work and how you work collaboratively with patients.
RACHEL MATTHEWS:
Thank you very much, Alison, and thank you for inviting me to join you on the conversation today
and I have to say what a great presentation. The assembled themes you and I have talked about
over a period of time. It is important to see them consolidated. To say briefly to people who may
not be aware of CLAHRC, I will let you know what the acronym is. And what we do and what my
role is within the program. The National Institute for Research, it is a collaborative leadership and
applied health research and care. We are based in North West London and are one of 13
CLAHRCs.
The purpose of CLAHRC is to speed up the application of research evidence into practice, so it
will ultimately help patients, improve outcomes and patient experiences. Each institution works in
a different way. We focus on improvement and the method we can use for improvement and how
importantly patients and carers and families have a critical role to play in that.
That is very quickly what the company is about. My role is how we involve patients and the
public. As Alison has talked about in her presentation, we had a bit of a learning epiphany along
the way, really, in terms of how we might do that. My role is essentially to support the
improvement team, which involves patients and families and carers. We also research how
research is involved in the schemes. We began to look for ways we can do this. A lot of the way
our thinking has been influenced is by Alison and the things we have talked about together,
which is incorporated into her presentation.
To reflect on some of the key learning that we have put together, is that what you want?
ALISON CAMERON:
We can go onto that.
RACHEL MATTHEWS:
I think in terms of how we go together, what Alison has demonstrated is that there is an element
of courage required in this work. To confront ourselves as much as anything and I think that is
something that has been an important learning point for me. A lot of e-learning Alison talked

13. 13
about, particularly around fellowship and the leadership academy at the NHS. What we were
going through was quite similar. We both had to reflect on how we have done things and where
we had been in the past. There were similarities from different perspectives. I think courage is an
important theme.
Honesty is also important, to develop an effective dialogue. If you don't develop a dialogue,
involvement will get stuck in a basic step. So there’s two themes. The other one, of course, is
relationships. Becky may go on to talk about this as well.
I think the learning that Alison and I have been on together is… What Alison essentially taught
me is when you think you understand, you may need to check again. My background is nursing, I
thought I understood people and I thought I could work out people fairly… Not easily, but
understand it. I think what Alison’s story made me realise was I was just touching the surface.
You need to get underneath the skin. The quote that Alison bought in from ‘To Kill A
Mockingbird’… That is not something you can do it once.
That brings me to my next learning point, persisting in the face of difficulty. Alison talked about
how she dealt with professionals over time. I think on both parts we wanted to run away, for
different reasons. For whatever reason, we managed not to run away and everything has
become ber because of that. I think we will have a point where we may still want to run away, but
we have recognised that running away means something is happening.
If it is really uncomfortable, there is probably a reason for it. “Sorry, this isn't working,” that is how
you will feel. A lot of work with teams generally is about moving people out of their comfort zone
and not into the panic area. How do you get that balance?
I was conscious that this is an Edge talk and I am firmly rooted in the system for lots of different
reasons, but I have to have one eye on the Edge. I think that is the balance that is quite difficult.
If people are interested in assistant leadership, this is the area I think is quite interesting. How do
you deal with people who appear to be maverick but are actually offering a different insight?
And then there is a separation between our intellectual understanding of ideas, again which
Alison said to me in a meeting which captured the difficulties we sometimes encounter. These
are her words. I use them myself quite a lot now. Intellectually we can often rationalise things and
we understand facts and figures, but emotionally we may be lagging behind and not matching
our rationalisation. That is where a lot of the discomfort comes from. It is having the confidence
to recognise that is happening and recognising that.
Alison pointed that out and I see that a lot more now. I am now more confident to understand
where people may be responding from an emotional perspective, even though they can
intellectually get that. There is a lot of balancing acts happening here, Ithink. If I leave it there,
for now. Alison, do you want to respond or bring in Becky?
ALISON CAMERON:
It was remiss of me that there will be an opportunity for people to put questions to us. I'm not
sure how that happens, who does… You can put questions, if you want to ask myself or Rachel

14. 14
or Becky, put it in the chat rooms or you can phone in. You have got to go slowly for Granny!
SPEAKER:
Put your hand upon your phone, there is an icon. You can ask a question to Alison and the
panel.
ALISON CAMERON:
That is exciting. Rachel, everything you said, that was amazing. I know now with the benefit of
hindsight, to quote one of the CLAHRC articles, those rupture points where we have been in a
really uncomfortable space where there has been a kind of clashing of assumption and all sorts
of things, but have actually been where we made the most progress. It is what we have done
with those. Having the CLAHRC methodology of looking at that and trying to see how we can do
things differently, it really helps. If you are having that kind of experience, you are probably
getting there.
If it isn't causing discomfort, it probably isn't quite getting there. I think she made some important
points. If you wouldn't mind staying online in case anyone wants to come in and take points or
ask any questions. For the time being, thank you very much. Hopefully Becky should be in
another office.
BECKY SEALE:
I am here. Hello. Great.
ALISON CAMERON:
Here we have Becky from the King's Fund. Tell us about yourself and the work you are doing.
Over to you and we can hopefully have a bit of a discussion after you have finished.
BECKY SEALE:
Fantastic, thank you, Alison. My name is Becky, I am a consultant in leadership development at
King's Fund. The King's Fund, we are an independent charity and we work to improve health
care in England. We do that through healthcare analysis, developing individuals and teams and
organisations and promoting understanding of the health and social care system.
I have worked with Alison for definitely well over a year and we have been particularly thinking
about how we all work together to support this paradigm shift in the system. We know what we
should be doing. We want a move from patients as passive recipients of services to where they
are more instrumental in design and delivery and leadership of the healthcare system. We might
not know how to do that. Our offer at the King's Fund is looking into that, how we help patients
and professionals together to build the skills and relationships that they need for partnership.
We are really thinking about this in terms of partnership. In terms of this talk, we are thinking it is
not about patients on their own driving change, rather driving change together. How can we learn
to do that together, really.
So, that is the summary of the work they are doing. In terms of what we have learned as we have
been fed to support this change and develop partnerships, it comes from working with Alison and

15. 15
others. We have been a total role model for this partnership approach. It is one of the principles
we establish right from the beginning, that the King's Fund are doing anything with organisations
who are out in the system. About patient leadership, we have to do it in partnership with a patient
leader.
We also run roundtables and as we have been working out in the system, I picked up on some
observations. Three learnings, number one, I won’t go over it too much because Alison has
already said it. It is issues of power and control and identity. From a leadership development
perspective, my learning is you cannot underestimate the primal instincts that are at play when
we are attempting partnership and working with patients. It is true of any partnership, but is
particularly prevalent here when clinicians and patients are working together.
It might materialise as resistance and that might be innocuous-seeming resistance, but we can't
have patients come into the room because they won't like the way we work or we might have
changed the way that we work. That might seem innocuous and sometimes I talk about it,
I have said to Alison before about the smiling brick wall that you get. But if you dig underneath
what is going on there, at heart, it challenges people’s very identity. If patients are there at the
board table as a board member, what does that mean about me as a board member? What does
it mean about what it means to be a board member? If I am sharing a decision with a patient as a
clinician, what does that mean about my role? I have to work out what it means to be a clinician.
Picking up on what Rachel said, it is about both personal things and the internal barriers and
what we should pay attention to and be honest about is how this challenge is asked. The second
one, the second bit of learning is there is hope, really, I think in learning to shift roles. We do
have multiple roles, we all have multiple roles and in daily life we move through them quickly. I
am a daughter and sister with my family, a partner when I am at home, and a leadership
development consultant at work. A patient if I'm in the GP surgery, for example.
There is overlap and we can consciously choose which we take up. I might be in a GP surgery,
not as a patient but as a leadership development consultant. It is easy because I can say I work
at the King's Fund and people can see that share and accept my role. But what does it mean for
a patient going into a meeting room with a bunch of clinicians and having the joint task of service
development?
I think what we have been learning as we work with organisations is that it might require, if we
are thinking about roles as hats, it might require patients to take off their patient hat for a bit and
for a doctor to take off their doctor hat for a bit, or more accurately to put on another hat over the
top. To keep that identity and difference. But recognise that you at that moment are in that room
to work together to develop a service and that there is a certain amount of equality and that
brings me onto my third point, which is about sameness and difference.
This is a really tricky one and I think it has come up for Alison and in the work we have done. And
certainly, we are still working on it. I find it really hard. It is the idea of working in partnership. It
doesn’t mean we are all the same. The reason we actually want patients and health
professionals to work together is because they are different. So why is it when we are in the
space together, that we start whitewashing and saying we are all patients. "You are a colleague,

16. 16
you are an associate at the King's Fund, we are colleagues", But I guess what I have learned is
to do that, if you lose the beauty of our differences and may neglect the support needed for all of
us involved. I'm sure there are times I have patronised Alison terribly by over supporting her. And
also times where I have under supported. I think there have been times that Alison has
underestimated the support I need.
We have learned it is easy to make assumptions and make mistakes and we can talk about what
has happened and learn more each time about what we both need. I think I will end by
summarising to say that I think, as with Rachel, that understanding each other and being able to
change ourselves is the first step to being able to collectively drive change in the system.
ALISON CAMERON:
Thank you very much, Becky that was really very honest, as I knew it would be. It has made
some things come up for me. I have actually found the transition into being a professional now, it
was 17 years since I last worked in an organisational sense.
I have found it really quite challenging. I have had endless debates with myself and others about
whether that means, am I a professional patient? Am I still patient?
There is still this need to be in a box of some kind. I have this role with NHS IQ, which is fantastic
as an organisation, taking those risks. But I wasn't able to be part of the team's work, on the
stand they had at this exhibition.
I also wasn't on the patient panel. And I felt extremely uncomfortable. I felt, I have no idea which I
am. I was in the no-persons land, not in a patient team or any professional team. Reflecting on it
all afterwards, no matter how painful it is, seeing what it is trying to tell me, I realise that is exactly
where I needed to be.
And I think you said this, it is not rigid. There are times when it is more about my personal
experience, it is about my story, it is about that stuff, and I never want to lose that.
Trish Greenhouse called it "going native", I don't want to lose the inside I have had from direct
experience of that stuff. I never want to lose that patient bit of it.
But it is not always the right thing to be dwelling on. Depending on a bit of work I have in front of
me. With CLAHRC, I sit on a government committee, and I have the same revelation there, I
thought, “I'm not here because I lived experience at this moment, then required because of the
skills that I achieved and work within that setting.”
Part of the leadership and the training I have had, kind of, give me some tools so I know when to
use which. And when to leave the personal stuff at the door. When to use it, as David Gilbert
says, judiciously.
He said something about, it is not about leaving the baggage behind, it is about learning to pack
it more smartly, or something. If I have misquoted David Gilbert, he will definitely give me a hard
time. It is roughly that.

17. 17
And I can get it wrong, I can get it wrong... When I was doing some King's Fund work, I was
training a group of consultants. And one psychiatrist there was feeling quite defensive. I can see
this from the body language.
That negated my experiences. Because they reflect what I had been through with a lot of
psychiatrists, the dynamics changed and it became quite unhelpful because suddenly I'm no
longer a professional, in a room, doing a job of work.
But I am back there in the consultation room and I'm trying to get through to a doctor who has all
the power, and I'm not doing it. So, how am I reacting? I have gone into a child, and I am having
a tantrum, basically.
So these things do happen. As I continue to develop, with the help of people like yourself and
Rachel, these are becoming rarer.
It is quite difficult to know how to do that, and how to judge which is which. Both of you that was
absolutely great. I think now we can hand over to cyberspace, is that what is going to happen?
The elves are looking excited.
SPEAKER:
I have a question in the chat box directed to Becky. Hopefully, I can read it out. This is the
question, what is the role that you think patient participation groups have to support ongoing
discussion between practice and patient collaboration and coproduction of healthcare?
BECKY SEALE:
Are we talking about GP surgeries?
SPEAKER:
A general question in the chat box. So, I think if we just do general. Maybe if you want to take it
from the GP side, then maybe the acute side, it would be great for everybody to look at that a
little bit wider.
ALISON CAMERON:
Is it more about the actual patient group? The patient participation groups? That is what I would
take from it.
BECKY SEALE:
I will talk about any patients working in the system, what is their role. I think Alison would answer
this better than me, but I have learned so much from Alison and Mark about the importance of
role modelling.
The sorts of behaviours that we want to see. I think it is exactly what Alison was talking about,
that self-leadership. Moving away from the "them and us" conflicts that can happen.
Demonstrating that, actually, we can work together, and if you model that behaviour, and you do

18. 18
it consistently, I think you will see a tipping point.
It won't be possible for people to fight, and people will be quite surprised, I think. There is an
image in people's head about this shouty patient.
If we work together, hopefully people will take us up on the offer and work in the same way. I
don't know if I'm being horrendously naive, but that is the principle we're trying to work with.
ALISON CAMERON:
I think it is less about the specifics of the roles, it may be a patient participation group, it might be
being a lay member on a CCG, there is a whole raft of ways in which patients are operating.
I think the principles, like Becky has just said, about leadership, collaboration, dialogue, knowing
how to ask questions, is really vital. In whatever setting that might be. A GP setting, primary care,
the same principles...
I'm going to talk after this about the whole range of roles. I think what does unite or underpin the
whole range of activities is, is it effective if it is based on dialogue? Definitely on dialogue and
genuine collaboration and trust, irrespective of where that work is happening.
I don't know if that is helpful.
SPEAKER:
I have found the person who asked the question, he is going to join us. Introduce yourself, and
say where you are from. And ask your question to the panel, fantastic, thank you.
SPEAKER:
It is Amran, I am a GP. It was me asking the question, we have had our patient participation
group now for 10 years. Ingrid, if you're listening in, it would be great to have you on the call, I'm
going to pass this over to Ingrid. Ingrid is the chair of our PPG, we have been running for 10
years.
It has been very much an opportunity for us to hear the voice of patients as a group. What I want
to do is pass this over to Ingrid and ask her what her thoughts are about the role of the PPG in
relation to this.
Not just for inside the practice, but wider in terms of engagement with the CCG, and some of the
things she has been doing as a patient.
Ingrid, are you there? I don't know if Ingrid...
SPEAKER:
Hi, is Ingrid on a different phone?
SPEAKER:
Can you ask the question, I am conscious of time?

19. 19
SPEAKER:
If we can get hold of Ingrid, I will keep going, if you like.
ALISON CAMERON:
Just clarify the question, so we can answer it.
SPEAKER:
The question was you have patient, patient leadership. You also have the patient participation
group which has the collective... What we have found is that patients have their own personal
experience, but they often learn off each other.
They're able to articulate an understanding which has been really helpful to us as a practice. It
has also been incredibly helpful for learning about how the system works. And the gaps that
they’re finding, which can then feedback to the CCG.
ALISON CAMERON:
I would say, how I define leadership, I know what you're doing in your practice is incredible, they
are patient leaders. They may not define themselves as such, but because they are effective in
articulating their concerns, they are working with you clearly in equal partnership.
They are not coming in and having a rant, they are working with you constructively. That is
leadership. It is about the qualities of the leadership and the whole as well, as a group. This is
the case in any working setting. They will be learning from each other as well. They don't seem
to do that in other aspects of leadership, and I think it’s great that you joined us today because
this will be one of the examples of getting it right in that setting at a primary care level, thank you
for joining us.
SPEAKER:
Does Becky have any more comments or Rachel? Then I will give the twitter and chat room guys
an opportunity to put forward comments. Any, from Becky or Rachel?
RACHEL MATTHEWS:
Going back to coproduction, even though in our company we are not doing what is proper
coproduction, we work through principles now. In terms of the question about patient participation
groups, what other things I would encourage a group to think about is the assets, again. Not a
word that everybody likes, but as Allison pointed out in her talk, it is not just lived experience, it is
what other people can bring.
Our new group we formed the last eight months and we are still testing at the moment to enact
reciprocity, the idea of exchanges and a two-way street. It is part of that process, what people
can offer.
It is also what are the tasks you want to work on together. My sort of radar is alert in tokenism,
and if they can't always decide what they want people for that is an alarm bell. It has to be
because you want to, and you haven't decided how they can help you. It applies to any group, it
needs to be guided.

20. 20
Also, the issue that Becky mentioned, Alison will remember this when coproduction came to the
top of the agenda for us, we did open space technology. Some people are not familiar with it.
You are essentially coming together around the theme and don't set the agenda. You allow the
participants to set the agenda and they can come and go. It is an alien way for people who are
used to working in the system, as what it does is you have no job titles, people don't know who
they are talking to and it is a much more creative process.
When we did that in our company, it demonstrated having to shift the power. The power could
shift more easily. When we did that, I felt I was jumping off a cliff to convince our director to do
that. He wanted quite a traditional system. So go back to the principles of coproduction and
experiment with less formal techniques, which can unlock a greater creativity to the traditional
methods.
ALISON CAMERON:
Thank you, Rachel, and thank you for mentioning the exchange network. I used to have time
credits in my handbag.
SPEAKER:
We have got Carol on the line, calling for the voluntary sector. Welcome to the session.
SPEAKER:
Hello, Alison. I think we think on the same box, sometimes. One thing I would like to add about
patients and patient leadership or participation of any sort. It is absolutely no good for the health
professional, CCGs or whatever to say they want a patient on a group. If you get the wrong
patient or a patient who really doesn't understand, for example, a recent situation was with the
CCG who picked somebody to be on the primary care group. I happened to meet up with this
person afterwards at another conference and she said "I haven't got a clue what I am supposed
to be doing", No one was giving her any help and explaining how to go about it.
I think there is something to really think about there. There is an awful lot for patients to learn. I
haven't got a clue about what is happening in maternity at the moment, for example. I don't really
know what is happening in other areas of the NHS. I do know what is happening in elderly care
and dementia and I am very conscious of other things in the health service, but to expect
somebody to come in from a patient participation group to suddenly understand on the same
level as the health professionals there, sat around the table that is totally unrealistic. I think that is
something that really has to be taken on board. You can love someone with a passion to want to
do it, but without that full box you are lost.
SPEAKER:
Thank you, Carol. Absolutely spot-on. I'm just asking Val if she could mute and David…
Welcome David.
SPEAKER:
David McNully from NHS England, I work in the patient experience team. What I wanted to ask,
Alison I think primarily, we did a project recently that Carol was involved in. We were going to
investigate patients as leaders to help improve the patient experience.

21. 21
One of the things that was interesting when we asked that question of NHS organisations, many
of them told us they were doing work in that kind of way. At the top of the ladder, you have got to
think back to that slide. What came back quite often, that… A form of involvement or
engagement. There is a lack of understanding in this system of that ladder. It seems to me that
one of the things we would be finding really useful is to better explain what co-design really
means in practice.
It is that way of doing things that has been talked about a lot and articulated so well this morning.
I think a lot of the NHS just doesn't understand it. In some ways, the focus on that is probably
more helpful than talking per se about patients. Thinking about how we might get that message
across better.
My second brief question, it is your point Alison about being in the leadership academy, if it has
spread. Have more people had an opportunity to work in the way that you want?
ALISON CAMERON:
The first question, you are absolutely right. A lot of people are in that middle zone of patient
influence and it has been described by two professionals when they discovered that there was
further to go, it was a shock to them. They thought they were coproducing, it is a buzzword. They
both used the word smug. They were completely different organisations, one of the graduates
graduated last week on her placement, she said she thought she understood it.
One of my colleagues believed she was pretty much there and then they realised there is fur ther
to go. And how both came to that conclusion was working with people that I would describe as
patients leaders, who were able to have those conversations and ask the right questions. I don't
think overproduction and patient leadership are exclusive. One is necessary for the other to
happen. It is about values and ways of working. It's about not being afraid to have difficult
conversations.
It is a question of working together and progressing further up the ladder jointly. You can only do
that jointly, you cannot impose coproduction. The bottom bit, the more passive stuff about
information, that is all important as well. You want to get that right, it is the bedrock. You have to
get it in place to start pushing to go further.
There is a lot of material out there about where it is really happening in coproduction. You just
need to have the conversation together and not try to work it out solo. It is messy which means it
is probably working.
The leadership academy, I hope they will take the opportunity to develop shared leadership
training, where we come together. There is a lot of need for training and development separately,
but there is such power in doing that together. We are not patients at the beginning of a patient
thing, and a disembodied voice, but we are learning from each other's perspective. It isn't rocket
science to me.
Here's hoping, you know me, but when I get an idea I am determined to see something happen.
If it's not with the leadership academy then elsewhere.

22. 22
SPEAKER:
Thank you, David is joining us. Running out of time swiftly. It has been amazing. Going straight
over to get some comments from the chat rooms and then we will go to Carol for the twitter
feedback. Thank you so much. What came out of the sessions, there may be a session on
coproduction. There are other things we can grow. Over to Dom.
SPEAKER:
Thank you everybody for your time today. The chat has been fantastic and everybody is loving
what you have said, there is more honesty. People have said how it has affected them. Some
questions have not been answered yet. There is a feeling that genuine changes to the process
rather than an event with the outcome of coproduction, at least a product. Whether we answer
now or do that in another session, specifically around coproduction is the way forward.
I wanted to mention something Christine mentioned when you talk about your two-week loop out
of hospital. Surely that must have signalled to professionals that she really needed help beyond
being patched up for the short-term? If not, why are the signals not being dealt with
compassionately and holistically? Lots of other comments, but I know we're out of time. Thank
you everyone for your feedback and maybe we can answer them in the email and the
newsletter.
SPEAKER:
We may be able to follow it on Wednesday. Carol, are you ready? Hi, Carol. Having trouble? She
is not there.
CAROL READ:
I have been unmuted. Nil points. Let me just see all the tweets. Fantastic, everybody. People
wanted to quote the Semtex quote.
SPEAKER:
Carol, we are having problems with your phone. We appear to be having difficulties with your
phone. We are just going…
SPEAKER:
We have got the other Carol coming.
SPEAKER:
I know from keeping an eye on Twitter, it has been an amazing session. My favourite tweet was
about hospital bags. Hope you get well soon.
ALISON CAMERON:
Tweet away, please.
SPEAKER:
Great to be here today, I will hand over to Carol for her talk.

23. 23
ALISON CAMERON:
It has all been chaotic, I love it. Basically, it is not about role, it is not about roles specifically.
They're all descending into hysteria now. Here are some good people to follow. Just to show the
whole range, there are patient entrepreneurs, designing apps. David Gilbert needs a special
mention, he is the first patient director of an NHS trust, working with managerial directors as an
equal in Sussex.
Fantastic workaround self-management, education. Take-home messages, we're not all about
needs, we all have different assets and deficits. Don't be afraid to turn the pyramid upside down,
it might seem challenging. It is often where the fortune lies.
This is reverse innovation. Those of us at the bottom of the pyramid may just have, if not the
whole answer, a significant part of it. Please don't keep on capturing experiences, let's liberate
our experiences, liberate it as well as capture it.
And a bit of swearing. I was living there were some Americans on so we could be offensive. And
a bit of Banksy to finish. Don't let the boxes come petrified into bunkers. Thank you, comrades,
for listening.
It has been quite an experience, totally nerve wracking. Please get in touch with me if there's
anything I have said you want to follow up on, I’m really happy to answer everything.
Find me on Twitter, and do keep in touch. This is all about conversation, I am learning as much
as everyone else. Thank you so much.
SPEAKER:
Thank you, Alison, I am sure all of you will agree with me, brilliant session. We will be looking on
Twitter, we will probably sit here for the next half an hour, looking at the tweets and answering
them.
Thank you very much for joining the session, we shall look forward to seeing you again in one
month's time for the next Edge Talk. Thank you, goodbye. See you next time.