The People-led Policy Panel is a group of people who are working together to reform adult social care support in Scotland. The initiative is supported by Scottish Government.
Michelle from Iriss has a conversation with Deirdre Henderson, People-led Policy Officer at Inclusion Scotland about the set up, aims and ambitions of the panel.
She also spoke to Denis Shovlin, a member of the People-led Policy Panel about how he got involved and his experiences of the panel to date.
MD - Michelle Drumm
DH - Deirdre Henderson
DS - Denis Shovlin
You're listening to Iriss.fm, Scotland's social services podcast. On 7th February 2019 Deirdre Henderson, People-led Policy Officer at Inclusion Scotland, and Denis Shovlin, a member of the People-led Policy Panel, spoke to Michelle from Iriss about the setup, aims and ambitions of the People-led Policy Panel, a group of people who are working together to reform adult social care in Scotland. The conversation starts by exploring with Deirdre how the idea for the panel came about.
DH Inclusion Scotland is a disabled people's organisation which means it's an organisation for disabled people run by disabled people. So obviously within our membership it was very clear that the adult social care support that people should be receiving wasn't working as it should. Our Chief Executive Officer, Sally Witcher, had been speaking to Scottish Government officials and they were looking to try and reform adult social care support, and through their discussions - and the ethos of Inclusion Scotland is very much designing things co-production with people who use the services - the Scottish Government challenged Inclusion Scotland to actually come up with a People-led Policy Panel.
MD A challenge?
DH Yes, a challenge.
DH That's how Sally describes it. And that's certainly working on it that's how I describe it. So the project's been funded in its pilot phase - its first phase - until June this year running from spring last year, and really we're working through a co-production, and co-production is quite messy at times. Not everybody'll agree on things, but that's fine 'cause everybody is working together. That's the point of it.
MD Mmmhmm. So how did the panel come together then? There's a certain number of members on it now and ...
MD ... how did all that happen?
DH So we knew we wanted to recruit about 50 people from across Scotland. We were very keen to get the different representation of how people use adult social care support. So they might be a supported person, might be a carer, might be a paid carer or unpaid carer. We also wanted to make sure that we had a good geographical spread because obviously someone's experience in a very remote community would be very different to an urban community. We were looking for people's different home experiences, so people might live alone or might live with other people or in a residential centre. Things like how they were funded, and of course very important to ensure that they've got a spread of people who have protected characteristics in addition to potentially being a disabled person. So they might be to do with religion, race, sexuality. So in the end we had about sort of 60 different representations that we were looking for, for the panel of 50. So to start this off, 'cause I work in co-production a lot, it's one of those things that's better to do it with other people. So we recruited an advisor group first of people in agencies from across Scotland and a few activists, and from that they helped me to put together the recruitment package including what the representation lists would look like, and so we managed to recruit the 50 people from across Scotland in a very short time, and within that we also have a core group of 20, and the commitment for the core group is that 4 times a year from sort of October to June they're meeting with the Scottish Government officials to develop the co-production together. It's fairly important to say as well that we've tried to recruit people who've got experience of being activists but also people who've never been involved in things like this before. So we've got a mixture of those voices that are very experienced, have a lot of good knowledge to bring, and also folk who bring their own experience but maybe have not been heard in the past, and very much although we have people recruited based on the representation of different elements as I said earlier, we didn't expect any to come along and represent a group. So if you were a gay person for instance we don't expect you to represent all gay people in Scotland.
MD Sure. Yeah.
DH You can only represent your own experience.
MD Mmmhmm. The people who are on the panel, did they have experience of accessing services or is it just people in the community?
DH They had to have experience of trying to. They didn't necessarily have to be successful in accessing the services but the important thing was that they had tried to use the system. So obviously other people maybe who've been using the Independent Living Fund for many, many years, and people have had good experience, not good experiences, people using Self-Directed Support now, people who are on PIP. All sorts of different experiences, but the whole point is that people are experts in their own experience, and that's what they're bringing to the co-production is what they actually understand the policy on the ground so they can help identify where there are problems and also looking at solutions.
MD Fantastic. And what does the panel aim to achieve?
DH So the panel was launched in October by Jeane Freeman, the Cabinet Secretary for Health and Sport. She's very, very supportive of the project, very keen to see a lot of change, and what she had said was everyone in Scotland, every single person in Scotland should have an equal right to live as independently as they can and as they wish to, and I think that's really what we're aiming for is that people have that quality of life, that they're valued for their potential and supported for their potential, not just what they can do now. So we know that at this moment in time there are a lot of financial issues with local authorities and health and social care partnerships. We know that people are under a lot of pressure and so all these things are to be taken into account, but we also need to understand if there are issues that need to be sorted between the cause and the Scottish Government, that those things can be supported through the group trying to come up with useful ideas and to help best to reform the system. What I would say is that in my experience of doing co-production over the years is that actually people who take part in it as service users are very reasonable people who really just want to give their time to make things better for themselves and for other people, and I think that's certainly what's coming through in the process.
MD Mmmhmm. I think the evidence would suggest as well that with the integration of health and social care that that's not maybe happening as well as it should be at this point, so I think it's going to be more important for the voices of people in communities and who use services to be involved in supporting this health and social care integration.
DH Yes, and I think at a local level the health and social care integration bodies would really benefit from having co-production so they can actually identify what the needs are of the people in their communities. It would help them with their budgets, it would help them with the leadership. All the things that the Audit Scotland report that recently came out have identified are things that need to be looked at and there's a willing group of people out there, not just in our People-led Policy Panel but locally in everybody's areas, who would like to help. Everyone recognises there are difficulties and so everybody needs to work together.
MD So what has the panel been doing then?
DH So the panel really is being set up as a driver for change. In its first launch in October the full panel of 50 with the core group were meeting the Scottish Government officials who we're working with and we've just had a second meeting, and that's very productive. There's a lot of information we have to keep sending people and asking them to comment on and to think about and then to absorb and make decisions on. Many practitioners might be aware that - or people who work in health and social care - that the Scottish Government recently had a discussion paper that went out. They were asking for people's views on health and social care reform particularly around the adult social care support, and that has been distilled into a summary which our People-led Policy Panel have looked at and looked at identifying priorities for change for the reform, and so now that is going to go to a programme delivery group who are a partnership of all key players who we'd need to make things happen.
MD Sure, yeah.
DH And they'll work out different work streams of how that will work, what needs to be done, what's already been done maybe, and then that will go to Leadership Alliance who are the key people who really will make it all happen.
MD Make the changes happen.
DH But it isn't a one-way street, it's going both ways. So there'll be discussion coming back. It's more like an opening of dialogue but it's very much seen that the People-led Policy Panel are the people driving the change 'cause they understand the difficulties and have the insight to understand how policy could be better.
MD And can you say a bit more about the priorities?
DH So there are different priorities being looked at just now. I wouldn't say it's the full list because I think that's part of the process is there's so much information that even at our last meeting I wouldn't say we covered all the different things. Certainly in our meeting in October we had the full panel. We asked them 2 questions. So one was what do you think good adult social care is and then what their experience is, and for some people they've had not bad experiences actually and other people they've had really, really terrible difficult experiences, and that is you know obviously the challenge is to sort that out, but there are lots. I think we identified about 8 different priorities. So probably in terms of Iriss listeners the workforce is actually one of the things that people care a lot about. It's not all about what you might imagine. They're really interested in making sure that people who are working with them are getting paid properly, you've got good working conditions. They want people to have a good career path so that people stay and they have continuity of care and support. There's things like obviously about being treated with respect, being recognised that people have potential. Thinking about social care, particularly the support being not just about personal care, being much wider than that. Seeing people as positive elements of a community, not a burden.
MD Sure, yeah.
DH So it's very much a lot about emphasis as well as finance.
MD So the panel's a wee bit of an advocate almost for the workforce?
DH Yes, yes.
DH There's definitely a desire to see it as a good experience for both the person who's supported and the carer or you know if it's a paid carer as well as an unpaid carer.
MD And I suppose then going forward with the panel, you're saying it's funded until June, you hope that it'll move forward and continue to influence health and social care?
DH Yes and I think the fact that when we started I think we were all still working out how it was all going to work and over the months it's become more apparent how the process is going to work, and we can see that there's much more of a dialogue that's going to happen. We're now looking forward to having a meeting in the near future with the People-led Policy Panel's core group and the Leadership Alliance directly so that they can have a discussion about the things that have been raised by the People-led Policy Panel and maybe get a clearer understanding of some of the things that they might be thinking about changing and to understand how that would affect people. So hopefully this is like a dialogue, and I think the Scottish Government are quite keen to see this as something that other professionals can then tap into or develop for themselves so that you know, health and social care is a very big area. Our focus just now for our People-led Policy Panel for health and social care is really just about the adult social care just now but it will widen out I suspect as time goes on, and we might re-recruit and we might change the structure slightly because as we go along we figure out what works better, and that's the whole point of co-production is that you start with an idea but going along you work out the way it works, and not to be frightened of that. It's actually just part of the process.
MD Uh-huh. 'Cause there's sort of a panel for Scotland at the moment as I said, like People-led Policy Panel for the country where maybe you might need panels for each local authority going forward or something, or the local authorities will take the model and roll it out within that community.
DH Certainly with the health and social care board areas some of them will obviously cover more than one local authority or they have clusters, and it would certainly be to their benefit and it's not enormously expensive to do it. It just takes a bit of time and it just means that you're planning, you have to plan a bit longer if you want that really valuable information that people who use services have that can give you a steer as to where you could make better use of your resources.
MD And you have that information I suppose to support people to plan if they needed it or?
DH Yeah, we would support any health and social care board who wanted to try and introduce co-production more. I think it's been one of the things that Audit Scotland highlighted was about who's really driving the needs of the health and social care boards and that the leadership has more collaborative rather than leading from the front, and so this is a perfect methodology for doing that that will be to everybody's benefit, not just the people who've experienced the services themselves.
MD And of course you're giving an input I think aren't you at an Iriss-run event?
DH Yes. We're very keen to explain a bit more about the People-led Policy and give people a chance to maybe ask questions to be able to find out more about how it might work in their area. We're hoping we're developing a model that can be used elsewhere. As I said it's to everybody's benefit because ultimately we all need to work together, and that's why in the process although we're working directly with the Scottish Government we're also working now with COSLA directly involved as well, and that is very much because everybody is part of it and we don't want to be leaving out key players, and one of the things I suppose to say about the People-led Policy Panel as well is that from the very start we've made it clear that as part of the programme is that there's a direct link to the Cabinet Secretary for Health and Sport. So again we'll be feeding back to her about what we're doing and how it's progressing and also how people feel about the project, because again it's got to be a good experience for people taking part. There's been a lot of times in the past where people have been consulted and consulted to death effectively. They feel that nothing changes and we can't afford to have that happen. We need to see change and we need it to be seen that people are actually driving that and it's making a difference. So that's why it was very important that we wanted to make sure at the highest level we had somebody who could make sure that does happen.
DH I suppose one of the things that's maybe quite good to say as well is that we want it to be a very good experience for our panel members but we also want it to be a good experience for our partners. So we feel we're facilitating it, but really it's the partnership between the people in the People-led Policy Panel and the Scottish Government and COSLA, and I would say that we were asking our panel members what they felt about the process so far and people were very enthusiastic about it. Again as I said earlier obviously they need to be shown there's going to be change, that's very important, but obviously at this stage we can't expect that to happen in 4 meetings. So part of that is recognising actually that the Scottish Government staff that we're working with are really open and have been very respectful of the panel and they feel like equal partners, and I think that's a really important part of the co-production is that there is that mutual respect and understanding, and sometimes officials get a bad rep about things but actually the experience I think has been good on both sides and I think that's a key part of why it'll work, because it has to be something that everybody wins on. People have to feel confident they can speak about what's important to them as well. The capacity building part is very important because obviously people who have much been involved in activism for a long time they maybe feel very confident to speak about things, but people who haven't, and it's a whole new jargon, there's a lot of reports and all sorts of things to be thinking about. So in the way you were asking a bit about priorities as well I suppose it's worth you know one of the things we've been looking at which came from the panel itself was the idea of human rights approach and also the potential of a charter. So these things are all things we were interested in or would like to look at. It may not be what happened in the end but it opens up conversations about how we see the relationship between government and the people, and I think that's really interesting, especially as the Scottish Government is very keen to develop the human rights agenda.
MD Yeah. And for listeners who are interested, Deirdre will be giving an input at our event which will be held on the 18th of March.
Intro Dennis Shovlin, a member of the People-led Policy Panel tells us how he got involved and his experiences of the panel to date.
DS First of all I would like to say it's very nice to have the opportunity to have dialogue with you ladies, Michelle and Deirdre, and Deirdre has led this group, co-production group, extremely well and she is a Sophia of wisdom, and Sophia of course was the god of some wisdom, and that's the beauty of the feminine. So I want to keep in with the right people. Well, how did I become involved with this?
MD Yeah, how did you hear about this?
DS Well first of all I'm a member of Inclusion Scotland and I had the opportunity of joining this group. So in essence I did a tick-box exercise. I ticked certain boxes and as a result the way that this exercise had worked out I was selected. They did not do it with my name on it to say that Dennis Shovlin, Bachelor of Divinity Degree, would get automatically chosen. It's a good experience and it's very positive.
MD What did you hope to get from being involved in it?
DS What I would hope to get is transformation. All the children know about "Transformers", what it means, so that's a modern world. So a great analogy that we could use is a caterpillar. The social care model is like a caterpillar. So many different legs to different authorities and it's just totally nebulous. It's all over the place and not fit for purpose. So what we really need - I put my theological hat on and use a theological word, the word metamorphosis. It's a complete transformation from one state to another. So we really need to transform this whole system into a Scottish-guided system because then it will be like a beautiful butterfly that will be an example to the world, because when you think about the beautiful vision of a butterfly flying free, as Jeane Freeman said, we're entitled to independent living, to live our life as we please - of course within the law, even an American constitution - that we've got the right to health and happiness, and it's very important that we live independent lives because if you're independent then you can live in your own home for as long as possible. It saves the mental health bills because if you've got the right state of mind then you're okay, because we need everybody to work together, and this is what's happening.
MD And what do you feel you've personally brought then to the panel?
DS Well first of all I was in a very powerless position. Before you can be useful I felt that I was very powerless at one time because what had happened with the cuts they unfortunately took my DLA away from me.
DS Part of my DLA - it was my transport - and I don't want to go too much into that because it's too long and too expansive. So what I want to do is just to try and hone this in from this position of powerlessness. What I did, I fought back. It's the natural law of the universe. If somebody's going to push you you'll fight back because it's about survival, and unfortunately you've got this social Darwinism that's completely wrong where it's the survival of the fittest, and this is what's happened in many societies and that's negative. What we want to do is the positive of helping others, being out for everybody, and what happened is I fought my case and I won my case, and because of winning my case I got a beautiful vehicle. I can travel all over Scotland to help others.
MD Probably supported you to be on the panel and be able to access the panel?
DS Yes. It's helped me out because I was one of the only people who with encephalitis that's got a degree at the level I have got. I have a Theological Degree from Glasgow, and they thought it was amazing what I'd achieved. So I've got something to offer. I've got my experience, and it's not my head but it's more my heart because I love people. I want to see people be happy. I want to see my fellow human beings flower and flourish in Scotland. I want us to be people who can be good people that we can work together in a wonderful and positive way.
MD And how has it felt to come around the table with I suppose other people but also Scottish Government to reform the adult social care?
DS Well I'm used to doing talks with people because one of the things I was taught at Glasgow was about being a networker, and that was Iona Community, and they spoke about consummate networks because when I did my degree I'd a project to do. I had to go and help with the homeless at Oswald Street. I went around all the homeless places and I saw the drunks, I saw all the garden parties and all the rest of it, and all the situations they were in in the 90's at that time. So I'm used to speaking to councillors because I'm a community councillor, but our community council just folded up there so technically I'm not a community councillor anymore unfortunately. That was beyond my control, but speaking to government ministers, people think that these people are gods but they're not. They're only fellow human beings like ourselves. We've all got a divine spark in us. Everybody's got a divine spark. Being an agnostic person I believe we've all got a divine spark in us and we've all got that potential to move on and become a more evolved humanity, and if you can speak to councillors, members of the Scottish Parliament - I could say there was one humorous thing about talking even to European MPs. It's not a good thing to bring them up at the moment with BREXIT but we'll never mind about that. The European MP came to an Inclusion Scotland meeting and he says, "Hello there." I says, "How are you doing pal?" And then I introduced him to Jim Woodburn. I said, "This is the Chairman of Inclusion Scotland." Jim was gobsmacked. "How does he know him?"
MD So in a way this panel is quite a leveller then?
DS Yes. You think about Edinburgh. You know the high flats?
DS We were first to have high flats in Edinburgh in the Grassmarket, and what you had was the shopkeepers at the bottom and then you had the poor people above the shops, and then at the top floor was the aristocracy 'cause they wanted to get away from the smell. You had the same people living in the same building. So it's like that Edinburgh model where we're all in the same building. We're all part of the same cosmos. We're all part of the same community but we've all got different roles. It's like wheels working, we're on wheels, networks. You know this person or that person knows that person, and that's important. Working together cohesively, co-productively, so there's this great synergy that we can work together in a very powerful and transforming way, and that's extremely important.
MD Mmmhmm. And what have you learned from being on the panel?
DS Well I just you know I could use just a joke in the sawmills. I know a boy and his name was Willy and he says to me, "Dennis, you can learn something from everybody." He says, "You can even learn from a fool." I said, "What do you mean?" He said, "You can learn how not to do it." So in essence from each person we can learn from each other and that's important, but there's an important thing I was taught at the university by the Reverend David Hamilton - and he used to be the minister of the biggest parish in Scotland, I think it was New Kilpatrick - and he said, "Everyone is an expert in their own situation." And I think that is important that we're an expert in our own situation because we've all got something to offer. I said to the lecturer one time, "This blind eye doesn't see", but he does see. He says, "Think Dennis, think. You're not thinking. There's many different ways of seeing. Even a blind person visually cannot see with their eyes, but they can see in other ways", because I'm going to visit a blind friend tonight and he sees many different things in different ways and I learn so much from him, and he's a wonderful friend, and when you meet with people you've got 2 ears to listen and you listen to your colleagues. We can get together and a synergy can work together so powerfully we can only but win and make Scotland a better nation to live in, and that's important for me.
MD It's really great to hear all your energy and enthusiasm and ambition for the panel and I think it's fantastic.
DS Well remember if you want cohesion and synergy, synergy is working together. It's that energy so powerful when people work together. When people are of one accord co-production is the key, and it's the best way to do things because no person is an island. I think I've said enough now.