Transcript: Pilotlight: self-directed support for those with mental health problems

Podcast Episode: Pilotlight: self-directed support for those with mental health problems

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MD - Michelle Drumm
KD - Kate Dowling
JM - Judith Midgeley
JL - Joyce Lorimer
AI - Ailsa Innes
CW - Catriona Watson
TG - Tracey Grant

MD In this episode we hear more about the first Pilotlight Pathway in Moray Council. Kate Dowling and Judith Midgeley, Iriss associates in Pilotlight, give us an overview of the Pilotlight project and the first Pilotlight Pathway in Moray.

KD Social Care Self Directed Support Scotland Act 2013 will be enacted on the 1st of April 2014 and preparations for implementation are well underway across Scotland. Pilotlight is contributing to these preparations. It’s a 3 year project funded from the Scottish Governments provider Capacity Builders Work stream. Pilotlight is collaboratively designing 4 different pathways to self direct support for seldom heard groups, the outcomes that we are looking to achieve in designing these pathways are, to have identified attitudes that hinder access to self directed support and encourage organisations to overcome these barriers. To lead thinking on designing better services. To deliver collaboratively designed and produced services and support, and to increase the capacity of support providers to deliver a greater variety of self directed support and services.

JM In our first Pilotlight pathway in Moray, we focused on access to self directed support for people with mental health problems. We wanted to focus on this area because we knew that people with mental health problems have a low take up of direct payments relative to other groups and that one of the key findings of the evaluation of the self directed support test sites in Scotland, was that the test sites did little to promote self directed support to people with mental health problems. Our Iriss evidence explorers project identified barriers and challenges to take up but also the benefits of self directed support for people with mental health problems, so we felt it was very important to focus on why access is difficult for this group of people and how these barriers can be overcome. We hoped that in exploring this area fully in the first of the Pilotlight Pathways, we would be able to offer some solutions that will help more people with mental health problems access self directed support.

MD Joyce Lorimer, Service Manager, Assessment and Care at Moray Health and Social Care Partnership, tells us why Moray Council have decided to get involved in the Pilotlight project.

JL The reason we decided to get involved is because we have worked with Iriss before previously on a project that was looking at creating a culture of innovation within our services, so we knew they were a really good organisation to work with and we also recognised that within our own pilot of embedding self directed support that although we had managed to support some people who had mental health experiences, we hadn’t done that more broadly, so wanted to jump at the chance of looking specifically how we engage with people who have mental health issues.

… resources that Iriss have brought to the table, so it’s not just about having 2 experts in terms of a design expert and a social care expert, but how they have gone about doing that, I mean Kate and Judith modelled for us a really positive behaviour in how you can engage with people in a meaningful way and I think that was really useful for all of us around the table, from having the cards that we could hang up to say, ‘hang on a minute, I don’t understand’, to valuing the contribution that people made and I think in terms of a management position we can sometimes skirt over that. I think Iriss have left us with a legacy and a model that we can use in other areas.

I think there have been stacks of benefits about being involved here, one of them is about working with an organisation that we can learn from and who bring a stack of resources to the table, not monetary resources but in terms of the skills and knowledge and time that they have to commit that we benefit from. I think it’s also given us the opportunity to look at co-production with a group of people and the impact of that has been enormous.

We all sit around the table as experts rather than some people knowing and some people not knowing, so we have all claimed our place at the table of experts in our own right and I think produced something greater than certainly we as a service could have created by ourselves, it has only been enriched by working in a co-produced way.

MD Members of the co-design team spoke about the benefits of and what was gained from participating in the Pilotlight Project.

AI Practitioner Mental Health: The most useful thing, I would say, is actually experiencing the co-design and the co-production. I found that incredibly powerful on the basis of there was an awful lot of difficulty areas about SES for mental health, answers that weren’t going to be available, yet the actual process was incredibly rewarding and there is a huge amount of work that came out of that that can be shared nationally. To me it was really helpful that the Iriss co-pilot presenters facilitators actually met with the mental health team that was mostly social work, but also OT’s, Occupational Therapists and nurses, psychiatric nurses, to get a flavour of what people thought SES was about and what the problems might be and for me to then go into the actual service user situation where people were saying exactly the same things, maybe even more significantly, but I thought that was incredibly powerful to be able, as a mental health service, to say it’s not just ourselves that might have concerns about how this is going to progress our own service users, who were very much saying that we need to have that information to be able to feel comfortable to advise people, and some of those answers aren’t there, so again to me the actual experience of the Pilotlight, having the co-facilitators that actually did a huge amount of work to make sure that this was an easy process for everybody, huge amount of actually pulling together of that information, just as co-design and co-production should be, using peoples experience and knowledge which was vast, but also for a lot of the people that were in the group, I already knew, and to see their confidence building was just lovely.

Catriona Watson, Clyde Fill Day Centre Service User: It’s made me think that I could probably do this on a personal level, so I have decided to go to college to do events coordinating, but I just think I have got a brain here in my head somewhere and that it is actually can be a productive brain, rather than just sitting staring at 4 walls all day.

One of the reasons I kept going back to the things at the meetings was, I thought that even if there is one tiny bit of … I make one teeny weeny little comment that might seem insignificant and stupid to me, somebody is going to pick that up and take it away and it’s going to be … a situation outwith the team makes sense, so someone whether it’s a worker or whether it’s a service user, there’s going to be something they’re struggling with and I think it’s this little bit of useless information that’s going to make things click, everything is going to make a bit more sense. Even if it’s like, for example, so somebody from social work team and maybe they have got a client they can’t help, they want to help but they’re just not seeing it very clearly, if that makes it a bit clearer for them, then I will have done a good job, I’ll have done something right. Also if I help somebody a little bit, then it can go onto be a big thing. This has helped me in a little way, which is going to lead onto … for my personal future, it’s going to sound bigger, so for that alone, Pilotlight - I think those people need to get a big gold star, because it’s made my life better and it’s made my life go forward, instead of just being this dippy little person, I am going to be a dippy little person in an office maybe.

Michelle Fleming, Self Directed Support Worker at Moray Council: I would say that it’s actually made us more aware that the questionnaire that we have for self directed support can’t be used across the board, it can’t be generalised to all different client groups and I think the Pilotlight has really helped us focus on the mental health part of it in realising that they obviously need a different set of questions and obviously they have got a different set of needs.

We have got a prototype that’s been made up that we’ve developed within the Pilotlight, hopefully we will trial that again with the service users and see how it compares to the one that the currently have and see if it’s any better than what we have got, and also in terms of allocating the points, we need to look into that, but certainly from in terms of the work within Pilotlight, we have certainly got a really good basis for a questionnaire that’s fit for purpose for the mental health clients, and also within that we have looked at … the kind of theme that’s come out of it is a pick and mix theme, so it’s trying to, how to explain to people what Self Directed Support is and how it works, but in an easy read format. It was primarily targeted for mental health clients because the big feedback that we had got from them was, ‘it’s too much information, it’s information overload’ and they want it in bite size chunks that they can read, put down and it’s not too daunting for them, and one idea that came out was a pick and mix theme and it’s been gratefully received even within Moray Council.

Pilotlight helped me make links with other local authorities, particularly down in Stockport, because they have had a lot of success with their mental health clients and had a lot of clients that have gone through the process and have actually managed to make contact with 2 people from Stockport Council, and as a result of that are more than happy to share their questionnaire with us as well.

Natalie White, SAMH service user: I think the co-design has really worked for Pilotlight because it puts everybody on an equal footing, everybody has the same value, there’s no one persons opinion is more important than anybody else’s and I think for something like Pilotlight, that was really important to get that across. The service users are just as important as the service providers and without the service users, the service providers don’t really know exactly what’s going on, what works, what doesn’t work, so being able to have everybody on an even keel whose opinions were all valued and all given the same merit really made it work, there was no them and us scenarios.

Just having everybody together doing that for the Pilotlight really showed … we were saying things that some of the service providers hadn’t thought of or maybe weren’t aware of, but it was really important for us as service users as well to hear from the providers, for what it’s like for them to try and give the level of service that they do and how difficult and challenging that can be to try and meet what everybody wants, because you can’t satisfy everybody.

Steven McCluskey, Strategic Manager, Health Improvement at Moray Council: I think being part of a process where there’s clear, real potential there to significantly change and alter peoples lives, I think the process I think has also been very interesting as well from the feedback we have had from some of our co-designers and our service users, certainly the process I think has been a very positive one for individuals, I would suggest as part of their own mental health recovery a few service users have talked about the process having given then additional confidence and boosting their self esteem as well.

It’s been a 6 month process and I think from the start to the end, sort of 8 sessions over 6 months or so, yes, I think in some individuals we have found, without doubt, I think you can see peoples confidence, I think you can see people contributing a lot more and actually feeling a lot more confident about contributing as well, and I think that speaks volumes about the actual process as well and the way in which it’s been facilitated. I would suggest it’s not just a co-design process on paper, I think every attempt was made throughout the process and the workshops sessions to ensure that all participants had an equal voice and I think that’s helped for the co-designers, the service users to feel that their views are just as valid as anybody else.

Tracey Grant, Service Manager at SAMH: I wasn’t sure what I was letting myself in for but once Judith and Kate, and I met with them initially and when I found out what the object of the whole Pilotlight was, it was quite exciting actually, you know I just thought as well, opportunity for Sam H as well, locally to be involved in something that’s going to have a huge impact on mental health services. I mean I said during the Pilotlight, I had worked in mental health for 30 years and this is probably the most dynamic and the most proactive move ever for the mental health service.

MD Members of the team also told us what they are most proud of about Pilotlight.

AI As a typical social worker, I would say I couldn’t say one specific thing I am most proud about, however the actual work that everybody put in and the energy and enthusiasm and the dedication that everybody contributed to that group, I think I am most proud about if I had to define.

I really feel that the group is speaking on behalf of service users at a national level because I think it equates wherever it’s just people that happen to have mental health problems and I think other local authorities have really, really been struggling with how you implement etc, and I think it is going to be helpful to have this as an actual tool that can be used to help get people understand what it’s all about but also the value of if another local authority would consider doing co-production, co-design co-production, then I just think that is definitely the most beneficial way for everybody.

JL I think I am most proud of the fact that what we have done is found that there’s a whole lot of unintended positive consequences of our involvement, so we have got 4 products that have come out of it in terms of assessment materials and information and what have you, but actually around the table people have had the confidence and ability to move on to do other things, I think that none of us had expected …

It’s been great that by working along with people who, I suppose I would have seen as service users before and working along with them as partners, the insight that they have offered me to their experience of using our services has just been massive, we wouldn’t have been able to find that out in any other way I think, and there have been some really positive relationships that have built up, hopefully 2 way relationships, not just that I have gained insight into peoples experiences and circumstances, but hopefully that they have also had an understanding into how it works for us too.

CW The fact that there was like 10 strangers sitting in a room, with Katie and Judith, we were all staring at each other and now we are all … we’ve come out, we have got more knowledge, we have got more understanding, we can all go away, whether it’s the care providers or the care users and say well, this is what SDS is, we have got more knowledge, we can give information to people, whereas before we would have been just as in the dark as everybody else. But now if there’s friends or family that need to use SDS or somebody maybe I think that person would benefit from SDS, I could suggest that to them and they can go away and it can be productive. I could make peoples lives easier.

Margaret Adams, unpaid carer for someone with mental health problems who uses Clydeville Day Service: I think I am most proud of how we all came together, it was initially I think rocky for both sides in as much it was a new road and a new pathway for both sides to walk down. We found a common level and I think we all worked very well together, both the users and the providers and the people form the council and mental health, the whole lot, I mean it really was well done and everybody knitted together and made it happen.

Michelle Fleming: But it is the co-production, it has to be, I think above all else, above all the work that has actually come out of it, I think it’s actually knowing that the co-production team can be so successful if it’s gone in the right way and it’s managed in the right way, how successful a co-production team can actually be in getting the end result.

Natalie White: Really proud of how everybody worked together and how so many people who were incredibly shy and very nervous and quite scared really came out of themselves within the group …

Interviewer: … are you including yourself in that?

I was in that group as well, yes, yes, and there were some a lot moreso than me and it was really interesting to see as the workshops went on, people coming out of their shells and voicing their opinions and coming up with some really, really good ideas, everybody just kind of opened up. And it was a safe, comfortable environment where you knew you could talk about anything, you could talk about personal experiences and it was okay, if you got upset, it was okay …

Interviewer: … you weren’t being judged or …

There was no judgement, there was no, “oh for goodness sake, here we go again”, you know there was none of that. Everybody just got stuck in and got on with it and that was great to really see the confidence coming out in people.

Steven McCluskey: Part of our co-design process, I think it’s a process that’s not entirely new to myself, I have worked for a number of years with service users and some of processes, I think I have still within the past, I think it’s not always been called co-design but very much the same thoughts and the same approach that Pilotlight has undertaken.

On a personal level as well as a professional level, I would say it’s been a very illuminating process, I think any contact you have with people that access our services I think is always a positive experience.

TG I think it’s the fact that they adopted the SAMH idea of the little pockets for information, I think that’s really a compliment to SAMH and how we communicate with the public and with our service users. I think as well the pick and mix idea makes it very easy for people to choose what they want once they get their budget, I think that’s a very good concept that we have developed. For me in particular, it’s seeing the service users who have been involved in the process, I have known a lot of them for a long time and to see them take control and to flourish and for their ideas to be taken on board has been a great success.

Interviewer: … so you saw that happening in front of your eyes …

TG: Yes

Interviewer: … within that group and during that 6 month process …

TG: Yes

… they grew …

Definitely, they became more confident, they became more assertive in what they wanted which I think was absolutely brilliant.

KD One of the things that I am probably more proud about from Pilotlight is that we used creative tools and that they really proved to be so successful in taking complex issues through to solutions and an example of a creative tool that we used throughout the project are the Pilotlight characters. We asked everyone to come up with a character, to give them lifestyles and stories and think about what’s important to that person and then we used those characters again to develop outcomes for their character and to think about SDS could work for that person. So I think I am probably most pleased that Moray Council have said that these will be really useful tools for them to use in the future.

JM I am most proud of never having wavered in our belief that designing with both the people that use and people that deliver services would ultimately produce the best results. I have to say it was hard at first, we had to put in a lot of additional work at the beginning to make sure everyone had enough information and understanding of what we were trying to do to enable them to contribute fully and facilitating the early workshops was really challenging, I guess because we were all learning as we went along. One thing I would say is there are no shortcuts with co-design but the results really speak for themselves.

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