‘We should always seek to place the power to make decisions about investments with people and our communities’ 

 

‘We should always seek to place the power to make decisions about investments with those who have the best expertise’

 

Jay: Everyone’s got a story, you know what some people love to share their story, you’ll hear them talking about them on buses and all sorts of things.  A lot of people don’t. A lot of people don’t you know, and they’ve still got a story and those stories are powerful, right, and they can change things for everybody.

 

Jo [Narrator]: Welcome to the Living Well Dialogues a series of podcasts of intimate conversations between people striving to understand how our mental health system is shaped and seeking to find new possibilities to continue to grow their Living Well Systems in places across the UK.

 

This conversation explores ideas about where the power lies to make decisions both in the day-to-day of our mental health systems and about their future.  Power shapes our systems in complex ways.  It is often described as being both soft and hard.  Hard when power is clear and apparent in the processes and protocols that guide decisions and soft when it is experienced in our culture and relationships.  Being both soft and hard makes the subject of power feel elusive even slippery to explore let alone to define.

 

To share their own perspective and to guide us through this complex subject are Becki Priest and Jay Ahmed.  

 

Becki is a Deputy Director in a Mental Health Trust and a Clinical Lead for implementing the Community Mental Health Framework.  She describes growing up in a working-class background in a small town. She is a qualified OT (Occupational Therapist) and she has worked in several areas of mental health.  In 2015 she was invited to New Zealand where she led an OT and vocational service both regionally and nationally.  Here she observed how power shaped the experience of indigenous people who had been colonised.  She is a keen walker, proud Mum and devoted dog owner.

 

Jay is a poet. He studied Economics and Marketing Management at University, although only worked in this field for a limited time before becoming unwell and receiving a mental health diagnosis.  Jay has been a Trustee for Healthwatch for the past 7 years and is a representative on advisory and scrutiny boards. Jay has been part of the Living Well Programme from its inception 4 years ago.  He describes himself as someone who has experienced poor mental health but who is proud to have successfully challenged his situation to overcome his illness. 

 

After meeting for the first time and hearing each other’s backgrounds, Becki and Jay explore who has the power to make decisions about the kind of care and support people receive and begin to explore the tension there lies between power being held with those with lived experience and in communities or with the medical expert.

 

Becki: My concept about how we would share power is that people go through mental health training, and they do have years of training and they create years of expertise.  That leads me to my slight frivolous idea – I would quite like to set up a Dragons Den style environment where the clinical services come in and pitch ideas to experts by experience and have to actually explain what it is that they want to do, what their project is or what their idea is, or what their evidence based practice is, and the experts by experience have the opportunity to grill them and decide whether the money actually gets spent on that or not. … For me that would just provide this middle ground of - you’ve got people with a whole heap of technical, for want of a better word ‘knowledge’, about mental health services but don’t have the heart connection or ways to experience what a mental health problem is like. If they pitch it to people who do, actually that combination of both together - and the people who would be receiving the service actually - to be in a position of going “yes I want this, or no, I don’t want that” struck me as a way of sharing power going forward really.

 

Jay: I think that is a good example … I think the expert by experience voice really needs to be heard more, and what we seem to be doing with mental health is putting, sort of, bags of cereal on the shelves without any packaging or anything like that.  No one knows what’s inside. I think that we really need to get around that and I think listen to the expert by experience voice because it’s creating that packaging really it’s taking that design one step further, creating that fit …

 

Becki: It’s interesting isn’t it, because both are about the fact that the NHS is terrible at describing what it is we do.  Really bad.  My example is that you have to actually pitch it – your example about the packaging – that there doesn’t seem to be a good description and I think sometimes people in health services worry about sharing the power or the power dynamic changing because people might suggest that they don’t want what they are doing, whereas actually people often do want what they are doing, they just don’t understand it properly because we are terrible at explaining it and that actually having better descriptors about what we are offering and asking people, therefore do they want that, again is breaking down that power dynamic of just expecting people to want what we’ve got despite that we’re not describing it very well or telling them what it is, expecting people to trust us in a way.  That goes back to me from my experiences, growing up that positional power. People have an expectation that somebody will trust you because you’re in a job or got a certain title whereas actually that’s wrong and we need to be better …describing what we would like people to do and asking if actually they want it. In my early career I heard so much non-compliance, people are non-compliant, they’re non-compliant with treatment, they’re non-compliant with medication, but actually now I would say, “is it because that’s a bit crap?  Is it because it isn’t what they want?  This isn’t about the person not being compliant with their treatment, it’s often about the person going “I don’t want what you’ve got”, and it’s about an exercise in their personal choice.  I’m a white middle class woman what I might think I want is completely different from lots of people from different walks of life.  So are people not compliant with what I am asking because what I am asking is just a bit rubbish for that person in that context.

 

Jay: I actually was thinking that the question that was put to us was interesting because it was talking about where does the power lie.  Does it lie with experts, or does it lie with the community and people? And it actually brings me back to a question, which I remember being on a panel in Manchester a few years ago and I was talking about mental health, and they asked me the question, “do you feel like sometimes as a 3rd sector organisations you’re  always just patching over what the NHS’s failures, that sort of thing”. I stopped for a moment and I thought, “No I don’t.”  I explained that the 3rd sector and the NHS and all sectors around mental health work together … and we need to keep doing that, supporting each other to do that - and I think that’s where this power thing comes in … as we bring, the 3rd sector, … experts by experience to those tables where decisions are being made - at the co-production/co-design/co-delivery and co-governance levels.  As that happens, these things will level out and we should have a greater ease of change through the system.  I believe that we really need to listen to the patients and the patients haven’t been listened to for far too long. It may well be and it is absolutely true, I’ve had many conversations with many professionals, and sometimes I know that experts by experience find it difficult to talk to professionals about their work and it comes to loggerheads because they feel as though there is an impasse that they cannot get past. I feel as though that is probably, we need to get to that point where people can create these conversations without that politics involved as well, to move forward and really level that power dynamic.

 

Jo: Levelling the power dynamic with Dragons Den and mental health cereal. Becki and Jay have explored the importance of choice and transparency and the impact it may have on the dynamics of power in the system.  It’s here in the ‘middle ground’ that Becki mentioned that things can get messy and where that transparency becomes key to navigating a more equitable space where power might be shared.  So why is making things transparent so hard, and how may old and new beliefs about power be shaping it.

​

Jay: Like I said I speak to a lot of professionals in mental health and health and social care fields, but what I notice is that the many people at the higher levels I tend to find are looking for very similar things to what I’m looking for as an expert by experience in terms of collaboration and getting the best fit for what we need to create. What I tend to find is we are always going back to this question of cultural shifts within organisations and I’m wondering how we create and how we relay this power shift which we are trying to create at a top level, at a design level, and decision-making level and having incorporated that into the system, with that cultural shift. Actually, you’ve got many people working in the system who’ve got their own ideas on what mental health is.  I’ve been through the system so I know.  There are people who have got this idea, and that idea, they’ve all read the same books, so you expect them to all have the same knowledge, but that’s simply not the case … so how do we level that power dynamic?

 

Becki: I think as a senior person in the health service I see me giving people permission - and that’s part of some of that power isn’t it - that I give people permission in my organisation to co-produce, to throw the rule book away, to think about things in a different way. I allow people to do that.  The organisation I work for, I work particularly for my Health Trust because the chief executive allows us to work.  And again it’s that power isn’t it and not all health services allow their staff that freedom … so there is something about people at the tops of organisations enabling their staff to think about things differently. And also, a concept that has come to mind for me a lot lately is this separation, this ‘us’ and ‘them’. I guess I’m all about how we break down those barriers … for me some of that is breaking down some of the stigma that exists working in mental health services.  Many people that work in mental health services experience mental health problems and have family and friends who experience mental health problems, but I think a lot of people feel that they provide a service to those people that experience that, therefore they shouldn’t talk about that themselves.  So, I see some of the shift in health services is supporting and enabling people to say “hey that’s me too, I receive services and I provide services.  There isn’t an us and them it’s all of us together” … particularly people again in leadership, management senior roles, enabling people to talk about that and feeling safe to talk about those things.

 

Jay: The thing we’ve been saying throughout … expertise really lies with everyone.  It’s a question of how we get everyone to gather around that table, understanding that and working like that out in the field. And recognising that there is probably a lot of scarring within the system almost. For years we have been operating a certain way so it’s difficult to break away from that system and not have a scar.

 

… I know middle ground wasn’t the thing I said, but I want to say Beckie I think that middle ground was achieved by finding neutral spaces to go and talk amongst collaboratives of people who have a vested interest and an interest in coming together and dealing with this problem as a shared problem so therefore we come up with just a shared solution.  And at that point we leave our lanyards at the door.  There is no power dynamic we are just talking about mental health in its rawest form and actually that might be an uncomfortable conversation at the start for some people, actually as you move forward with it it starts to feel a lot more comfortable.  I’ve been there so I know what I am talking about, that’s where we created our middle ground.

 

In terms of the scarring … what can I say - I’ve been around mental health services for many, many years now … and only now are we talking about trauma informed care.  Yet, for the last 16 years everyone I have come across has been describing the same life events to me over and over again and I have been working and operating within the community with that full knowledge and understanding and adapting to that need. So, when it came to the time when we were designing a new service, I had to incorporate trauma informed care and it was absolutely through the ethnographic research we came up with what we needed to do, because it was 100% of what our test subjects had experienced.

 

Jo: So we are back in that seemingly illusive middle ground. It’s here where we might move towards a greater level of shared power rather than the ‘us and them’ positions that can sometimes feel dominant in our mental health systems. However, Becki and Jay have revealed that this middle ground is where our design meets our culture.  Where our aspirations and ideas about power meet its history.  We feel the wounds and we see the scars.  For both Becki and Jay, although this middle ground is not a comfortable space, when they seek to come together and step across the divisions of “us and them” it is a hopeful space full of possibility.  The making of this middle ground has been an important part of Becki and Jay’s experience of Living Well.  So, what makes it possible and importantly what corrodes and takes us back into relationships of separation, ‘the us and the them’.

 

Becki: I can’t talk about a middle ground without talking about money, and finances and commissioning and there will never be a middle ground until we have some money that goes back to a Dragon’s Den style scenario, because whilst a big chunk of money is being given to health services with one set of rules attached to it and another is given to 3rd sector organisations with whole different set of rules attached to it, there is never going to be equity. And when we talk about, I would like to broaden out our services and we would like to have 3rd sector organisations doing more, they can’t do more without more money. So, we have to look at how our services are commissioned to have a fairer way of everybody having equal access to the pots … for me the middle ground has to start with an equity of funding and an equity of access to the mental health pot for the area, it is where again the power comes into play, and I don’t know of lived experience people in my commissioning team, do you know of people with lived experience in your commissioning team?

 

Jay: No, on the point you’re just making about finance, I totally get what you’re saying, but I do feel as though one of the things we can do is design things and find the money to build them.  I think that is what we’ve done in Salford.  We didn’t have the money to start with, there was no way, our designs were far too grand for the budget we had at our disposal.  We found the money and we got it from bits and places and what-have-you. Don’t be deterred if the budget isn’t that big, that’s all I’m saying. Just dream big still.

 

Jo: Though there at the heart of the new middle ground is the soft stuff of relationships with all their vulnerability and rawness, it’s one that needs to be enabled by changes in the hard stuff, the funding, and the access. Again, we see our beliefs for a more equitable power sharing future meeting its existing context that has been forged in the history of old beliefs that we see no longer fit for us.  It’s here in the collision of the future and the past that Jay warns us of dampening down our hopeful aspirations for something different in the face of a context that appears fixed or too complex to change. So how do we actually make progress on making this middle ground of equity and power sharing a reality? Help us please Becki and Jay.

 

Becki: I think we achieve it through lots of big and little actions and I think all of us have a responsibility for this, for changing things going forward. Coming into all situations with an open mind and trying to put aside assumptions, so having that open mind and open heart.  And I think from a leadership position as well ensuring that everything we do has a lived experience in it.  Not just in it, but part of the leadership.  How I think we can help balance out that power is to have people with lived experience taking up 30% of leadership in new projects.  And also talking about our own lived experience for people who work in mental health services and encouraging others to talk about their own lived experience.  As I have talked about before, I think that breaks down that “us and them” power dynamic.

 

Jay: it would be a really hard thing to do to create these positions and just fill them. It’s a measured process.  It’s a process which done incorrectly could cost you a lot of time in terms of progress.  What need to really consider is how do they find the right experts by experience for those different roles.  I think the answer to that is keeping people involved in the changes in mental health, wherever they are happening, and keeping people updated on the opportunities that are available as they are happening rather than just almost like an additional thing, adding on a few people into a meeting isn’t the same thing.  Sometimes I do see people taking on people in roles where really, it’s not necessarily the right role for them and you can see that. For them to not just continue in that role but be able to do that role, but to add value, is quite difficult sometimes, so it’s about finding the right people to fulfil those roles to really make a difference.  Everyone’s got a story.  You know what - some people even love to share their story.  You’ll find them talking on buses and all sorts of things.  A lot of people don’t - and they’ve still got a story and those stories are powerful and they can change things for everyone, and we need to create the confidence in those people to say, “well actually, if I had a genie in a lamp this is what I would ask for”.  Making sure that the people that have been otherwise downtrodden and have difficulties in life and downtrodden by a system might find that confidence again to speak about their experience and hopefully change things for other people.

 

I thought of a poem called 'Intraview' that I wrote being part of an interview panel

 

We came to sit in,

Observe

And take notes

Whilst GM commissioners,

To providers

They spoke.

Our duty, to simply

Add

As we could -

Experts by experience

Doing as we should.

And, so we did,

Waited our turn;

Asked

One single question,

And from it 

We learned;

All that we needed,

And so much more.

Refreshing the way

The commissioners saw.

It seems

With that question

We Altered and changed

The way we'd continue

For the rest of the day.

Now, from then on,

It was agreed

Experts by experience

Would now take the lead;

Asking the questions

Whilst others took notes.

Guiding the way

The providers

Rewrote;

Their tenders for service,

Rendering dreams

Of those who have 

Lived in, 

Breathed in 

And seen

The services then

And the services now

Those who want change

And want to show how;

We can deliver

And give better service

To people who equally

Need and deserve it.

Lets hear a cheer

For the process

And people,

The powers that be

Who are making things 

Equal.

We're bound to see change,

A GM success!

If we 

Shape the way

Together

No less...

 

Jo: The middle ground that Becki and Jay picture will only be built by bringing lived experience from the outside, inside. To have that expertise of lived experience embedded in the leadership in very real ways, as Becki says - “in it”.  But Jay warns us about just making space and filling it just to add.  Instead, we need to build a bigger culture of involvement and inclusion.  One that keeps people meaningfully involved in order to grow the confidence of those with lived experience who’ve been downtrodden over years.  To step into leadership as equals, not additions.  Becki and Jay’s experience has brought into focus that truly sharing power is not simply about making the space for the other, the “them”, but to step from the space of “us” into a new place - a middle ground where we can come together with open heart and mind, together, no less

 

The Living Well Dialogues is brought to you by the Living Well UK Programme, funded by The National Lottery and delivered by the Innovation Unit.  For more information visit livingwellsystems.uk