Transcript: People's experiences of self-directed support in Scotland


An interview with Hannah Tweed and Dianne Theakstone.

Podcast Episode: People's experiences of self-directed support in Scotland

Category: Self-directed support 

Host(s):


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
HT - Hannah Tweed
DT - Dianne Theakstone

Hannah Tweed from the Health and Social Care Alliance, and Dianne Theakstone from Self Directed Support Scotland, spoke to Iriss about the joint research they are undertaking on user experiences of Self-directed Support in Scotland. This Scottish Government funded research intends to encourage and develop policy and best practice across the social care landscape.

MD Thanks so much Hannah and Dianne for coming in to speak to us today about user experiences of Self-directed Support in Scotland. It's a piece of research that you both are involved in. Why conduct this joint piece of research on how Self-directed Support is working?

HT So this project comes off the back of a couple of smaller pilot bits of work that both Self Directed Support, who Dianne works for, and the Alliance, who I work for, did a couple of years back, 2016, 2017, where we were essentially trying to address a data gap where there's lots of materials about local authority engagement with SDS, problems with implementation, of staff training, of all that kind of sort of valuable material, but very little in terms of people's actual experience of it and how their implementation and practice is unfolding. So these pilot projects were trying to address that, and then from those early findings and material coming out of it on a much smaller scale we've come together on a sort of joint project funded by the Scottish Government to do a much more comprehensive survey across Scotland.

MD Right. So this is quite ambitious then?

DT Yeah. It's definitely. I think it's developed as we've gone along, which is fantastic. So when I first started with Self Directed Support Scotland it was just me at the time, and I'm part-time as well, and then we went into partnership with the Alliance, and Hannah's full-time, so it's been great because it meant that we could actually broaden it out and make it much bigger than we first intended, which is great. So we have different strands to the project. So it's co-production in nature, which means that we have a project advisory group. They're online. So there's like an online platform where they communicate with us and they can look at their research instruments, they can look at our approach, and we're coming into the findings section so they can give us feedback on how we're doing with porting everything.

MD Can you tell me just who's on the advisory group?

DT It's a mixture of representatives from different local authority areas. So it's people that are involved with Self-directed Support local groups. We do have a couple of people who are attached to national organisations that also deal with Self-directed Support. So it's people who have a lot of knowledge and a lot of experience about it.

HT Mmmhmm. Lived experience.

DT And also lived experience as well.

HT Yep.

DT Yeah. Yep.

MD Which is quite important obviously to it as well.

HT Yeah.

DT Yes. Absolutely.

HT We sometimes get to the point where we sort of take that as read and don't actually state it, and then suddenly I'm like, "Oh, we should do that. That's a thing we should say."

MD Yeah. Yeah.

HT But yeah, so as it stands we're working across eight local authorities in the first wave, which is just getting to a porting stage now, with conversations with a further five to six for the second wave kicking off this Autumn.

MD Great.

HT So nothing like a nice calm period where we're both writing up and starting new research frames. So that's the current state of affairs with possibly more to get involved as that rolls out, and we're doing it in those sort of staggered stages basically because most of the interim research has been done by Dianne and I, and there's only so many hours in the day.

MD Sure.

HT But we're also really lucky that we're got a team of peer researchers involved.

DT The peer researchers are people who self-identify as disabled, and they've come on-board to do training and interviewing skills, and they go out and they help us with conducting interviews. As well as a survey that we've got live, we're also doing up to ten in each local authority area, with people that use SDS or people who've applied for SDS and they're maybe just waiting to get a decision, and people who've applied and perhaps not been eligible according to the local authority criteria.

MD Okay.

DT So it's just a capture of those different experiences.

MD Yeah.

DT Yeah.

MD So is that the main research methodology then for the study? Is it a survey and then interviews or is there more to it?

HT Yeah. So mixed methods. So the survey is fairly substantial. I'm brandishing this for no apparent reason, but hey, let's run with it, but it's fairly substantial in terms of picking the nuance of the process, so questions not just about what option have you chosen, but is that always the option you've been on, are you happy with that, who first raised Self-directed Support with you, where have you sought or obtained information about it from, you know, social workers, GPs, local organisations, friends and family, peer support networks, sort of the whole range, to really get a sort of much more nuanced picture about different population groups, where they're obtaining information, what's working, what's not working, where if say in borders there's something that's really constructive for people, is that something that in sort of an area of similar demographic, say Dumfries and Galloway, that there might be a really good point of commonality that could be built upon? So taking that quantitative material, because we're aiming to put out 1000 surveys in each local authority we're working on.

MD Okay.

HT So it's quite a substantial block that we're sending out, and then getting response rates of around 7% at the moment, which is not awful. It's getting there, and we're still getting responses coming in and we've also got an online survey which is routed but the same questions, and in addition to that we're running themed focus groups to go alongside the qualitative interview and the survey. Those are spread across different geographical areas but they're thematic in focus. So we're particularly keen to hear from groups who we know in the previous pilot projects we had lower rates of response from. So for example we've got one happening later this Autumn with RNIB, who are facilitating that, and we've had a very useful one with the Scottish Ethnic Minority Older People Forum around that particular sort of intersectional demographic. People First, for folk with learning disabilities, ran in Edinburgh with us, and it's just been really useful to get that group environment work and be a bit more fluid in the conversation, but also get a breadth of experience from different people around a specific point of engagement.

DT Yeah.

HT Uh-huh.

MD So you've had to have quite an investment and support from other organisations?

HT Part of the purpose of that is twofold. So on the one hand we're very reliant on third sector partners to spread the word about what we're doing, because there's a lot of people we're trying to speak to and trying to hear from, and there's only two of us.

MD Yeah. Yeah. It's a pretty big project for two people to undertake.

HT I should also add we both have our line managers who are involved in this.

MD Okay.

HT But they're a part of the sort of oversight group, not claiming full responsibility.

MD But you guys are doing the groundwork?

DT Yes.

HT That's the polite way of putting it.

DT And it does take time to build up the relationships sometimes with the local authorities as well.

HT Uh-huh.

DT So from first approaching the local authority to finding out who the best person is, that's often quite an undertaking.

MD It takes time.

DT It does.

HT Yep.

DT It does, and it can take weeks sometimes for people to get back to you.

HT Everybody in all of these areas is overworked and normally understaffed, and even if what we're asking for is buy-in for addressing the surveys bluntly, because GDPR, we can't, don't want that information for distribution, that takes further conversations about how are they choosing to distribute, what timescales we're working to. We both know far more about franking than either of us ever wanted to know at that stage, but I won't bore you with that, but like that sort of minutia that you don't really, we didn't necessarily plan this part of the process.

DT Mmmhmm.

HT That actually is something that, with regard to the feedback sessions that we're planning, we're hoping will be useful. I don't know if you want to chat about that Dianne?

DT Yeah. So we're just about to start running the local authority feedback sessions for the first wave that we've done. So this is where we arrange a day to run an event to bring lots of stakeholders together. So there'll be the local authority, different departments within that as well.

MD Uh-huh.

DT So there might be social work, potentially maybe housing as well.

HT Had a lot of overlap with that.

DT Yep, absolutely. So they all overlap with social care issues. There might be local councillors that want to come along, local organisations that want to come along, some users might want to come along, SDS users or even just people that are interested in perhaps going for a needs assessment after they see the information about the project.

MD Mmmhmm.

DT We want it to be very interactive.

MD Yeah.

DT All the way through the day, and to be constructive as well.

MD Yeah.

DT So we'll present findings from the survey because we can filter by local authority area so we can make it very specific about the area. So there'll be the survey results, there'll be the analysis from the interviews that we did in that area, and maybe some bits from the focus groups as well about specific issues, and we'll highlight what's working well in the area and we might highlight areas where they might want to look at improving or just tweaking a bit, and it just makes it all constructive because there'll be lots of things that are working well that perhaps they're unaware of.

MD Yeah. Yeah.

DT I think people start to get concerned that we're looking for negative things, but we're not. We're also looking for things that are positive and work well as well.

MD What are some of the findings then of the work you've been doing?

HT So we have some very interim material at the moment that we're just beginning to talk to people about, and some of the specific themes we've drawn out have been around people's experiences of transitions from children to adult services, and transitions in terms of different points of children's education in particular, and SDS as a sort of supporting part of that.

MD Okay.

HT We discussed mental health. We knew that it's an area where there's typically quite low rates of uptake with SDS, which does not mean there's low rates of need for support in that area.

MD Sure. Mmmhmm.

HT One of the really startling things I know I found during the interviews is that we had a fairly substantial number of our interviewees who discussed experiences with mental health conditions and sort of consequences of severe stress and anxiety and various specific diagnostic material, but only one of our interviewees of the eighty that we've completed actually had mental health mentioned explicitly in their SDS package, which is really unexpectedly low even given that context, certainly for me. I don't know if you had feedback on that Dianne?

DT Yeah. We have been finding in some areas a lot of this might be connected with the way that local authorities view their eligibility criteria as well. So sometimes that is restricted down to only critical personal care sometimes, which basically means assistance to get out of bed, to get showered and to get fed, and if you have mental health issues quite often you can get out of bed okay and you can shower okay and you can feed yourself okay, but what you might need support with is making sure that the house is tidy and making sure that you're keeping on top of mail and bills, that you're able to get out and about and socialise, do your shopping, lots of maybe social activities as well so that you don't feel isolated, and those social bits tend to be missed out.

MD Do you think that practitioners fundamentally misunderstand what Self-directed Support is?

HT I think some do. I think we've got reported evidence from people in fixed groups and interviews, to a lesser extent the survey, where they've said quote on quote they've been told by their social workers that SDS isn't for people with learning disabilities or, "The fact that you're here talking to me now means that you don't have sufficient mental health needs to have SDS", which even if that is happening in a minority of instances, and I don't want to tar everyone with a single brush 'cause that's not helpful, but if that's happening at all then that's indicative of either a significant misunderstanding of the purposes of SDS and or a lack of effective training about what SDS is intended to be, because to me there's a difference between telling someone, "That's not what SDS is for", and saying, "Finance have said I'm not allowed to approve this", because there's problems around financing and not giving people adequate packages to meet their outcomes but that's not the same thing as a lack of comprehension. There's a number of different ways in which there are problems with the system but I also think there's something around communication that is really coming out of this. So for example we've had several people now speak in favour of the idea of access to some sort of central independent helpline for people who have questions about SDS, whether that be about the assessment processes, about what it is, this is people as users, but something that exists in both web format and telephone format that they can go to, because there is such diversity of information they're receiving when they're calling up say social work. That's probably also connected to, I know there's a bit of work going on at Glasgow Cali around social work training and provision around SDS, so I'll be interested to see how that overlaps with the work we're doing. I think it's going to be coming out at similar times, but I do think that's a really interesting proposal, that repeatedly people are saying there's just a confusion of information about what they can do, and of the survey respondents we've had thus far, those who've said they were happy with the levels of support they'd had during the assessment process and during creating their personal outcome plans, they're the people who are significantly most likely to be happy with the way SDS is working for them.

MD Okay.

HT There's a really strong correlation between people who had good conversations around SDS, good support in going through that process and it actually working for them, and the inverse.

MD Mmmhmm.

HT Which sounds really obvious but actually making that work I think is where some of the nuance comes.

DT I think part of it as well is trying to encourage local authorities to look at the bigger picture, because the example that I was talking about earlier where potentially somebody who has significant mental health issues and they don't have that support in place through Self-directed Support for example, so they don't tick all the boxes for critical personal care, so their SDS completely stops, what then happens is that people will head off into crisis and they go down the pathways of going into GP, into crisis help, into hospital stays, and all of that costs even more. I think part of this conversation is to try and get local authorities to actually look at the bigger picture and say, "Well, if people have support in place that is preventative in nature as well", because it's supporting people to participate in society, then actually in the long-term they're saving a lot of money because people are not going into crisis and staying in hospital for long periods of time and going in and out.

MD Mmmhmm.

HT And it's better for everybody.

DT And it's better for everyone.

HT And nobody wants to reach a point of crisis if you could avoid it.

DT Yeah.

HT And there's also I think with some of the stuff we've been coming across it feels like there's a human rights component to this that is important to keep alongside that bigger picture.

MD Okay.

HT That's if someone is having, and again this is specifically reported instance, if someone previously enjoyed high quality of life through support with SDS, which is great, that's the point of what it's supposed to do, and then is told that they're having their package reduced because their attendance at religious services each week is a non-essential part of their life because it's not bed and bath, that's their one point of social but also specific religious, and I think that's an interesting overlap there. If that's cut, and this was in this case, what does that say about our priorities? So I think there's this question to stay as useful challenges, but I think one of the places where it's been interesting to pick that through is, we should have said we're doing a series of sub-reports. So we're doing an overall report on Scotland-wide findings, specific local authorities reports, but also thematic reports. So things like transitions. So we've had one interim sub-report already, which is available on our website.

MD Oh great.

HT Women's experiences of Self-directed Support as unpaid carers. That's not the main thrust of the work but because there's a significant piece of the number of responses around that, so one of our interns, who we're really lucky to have working with us through the Glasgow University's Q-Step programme, she was working on that material with us, but we've also been working on a number of planned sort of pieces of the work, so around people's experiences of SDS with learning disabilities often overlapping with the focus group themes. So one of the bits we've been working on more recently is around the transitions.

DT With the transitions we were talking to a lot of families who had disabled children perhaps going into nursery, maybe going into primary school or going into high school, and then coming out of high school and going into post-education options after that. So all these different sort of transition periods, and what we were finding is that there was quite a range of experiences in terms of how people found out about Self-directed Support.

MD Mmm.

DT So it tended not to be through the social work department, which is quite interesting in itself.

MD Mmmhmm.

HT And unusual in comparison to the rest of our respondents.

DT Yes.

HT The majority of people who are through social work.

DT In the survey with that.

HT Yeah, the survey respondents.

DT Yep. So they tended to find out through peer support networks for example, or health professionals ...

MD Okay.

DT ... to apply for Self-directed Support, and I think we tended to find that those who had successful transitions often had prior experience and knowledge of the Self-directed Support system in place. So they had that knowledge, they had that assurance and confidence that they knew what support should be in place and how things should be running, and they also had the energy to take things forward. So it could be little things like, well they're not little things, but important things like making sure that their child was fed at the particular times, that they were perhaps fed in a particular way, and activities that they participate in. So just making sure that everything ran according to the child's needs, and sometimes it just takes a bit of time to make sure that all of that runs smoothly, you know, if it's all new and you've got new staff working with that child as well. So there's a lot of effort and a lot of communication going on to make it successful, and in the transitions that's perhaps when it works well. I mean there were instances where planning had gone ahead for say 18 months to 2 years, which is in guidance to talk about transition periods before children leave school and to talk about what's going to come next and put all the support in place for that, and there were cases that we were hearing of that a lot of planning was put in place and then when it came to the first day of the post-education system everything fell apart.

MD Right. Okay.

DT So I think that just highlights that it does take a lot of energy and a lot of communication just to make things work even if you do plan it well in advance. You need to keep on top of things and keep pushing things.

HT Connectivity of services.

DT Absolutely.

HT Because that was an instance where we had somebody who had a very positive experience of SDS support throughout primary and secondary, and it was that transition to adult services specifically where they were then told, "Actually, this provision is only for twelve weeks."

DT Yep.

HT And twelve weeks is not a substantial plan for the rest of your adult life ...

MD No. No.

HT ... in terms of day to day provision of access to in this instance college classes and appropriate environments.

DY Yeah. And then it raises the question of choice as well, 'cause that came up a lot. It's that there actually isn't choice around in some areas as to what young disabled adults at this point in time will now do post-education. So there may be some college courses that they could perhaps do, but what happens after that?

MD Yeah.

DT So there's not much choice really going forward as well.

MD Mmm.

HT So particularly we had interviews with people who their kids had identified they'd attended sort of a one-day trial of a location where there was good support, good activities that they wanted to be doing, things they were interested in and that they had expressed interest in doing, that met their personal outcome plan but were technically just over the border of another local authority.

MD Right.

HT So still within a short driving distance but because it was outwith the provision provided by one local authority, being told, "Oh you can't do that."

MD Gosh.

HT Or, "We can't include the travel in that because of x or y", even though it's a fifteen minute drive or sort of fairly reasonable distances being discussed, and I think frequently people highlighting a lack of flexibility to make what should have been a fairly simple effective choice actually something that you had to spend six months arguing about, and that changes your engagement with it, and in those six months what happens for that young person?

MD So has there been examples of that where it has worked or there's been flexibility?

HT Yeah. Yeah, there have.

MD Okay.

HT So I've got an example here where this is talking about entering nursery, where somebody said they spent a long time trying to find the right nursery because initially the child in question, they'd proposed one location but it turned out that that was a site where a lot of the disabled kids who were attending that nursery had very different needs that were accommodated by that nursery but weren't for example swinging on the lift in the hoist, that the child in question needed in order to get around. It really wasn't a good place for her, but on having discussions about why that wasn't suitable they were then able to find an alternative venue where there's four to a class, others of them have very similar conditions and needs to the individual in question, and quote on quote, "She comes home and she's happy and she does really well, and now I'm catching up with the last three years of my life", and that's from the person's mother.

MD Yeah, good.

HT So where there is that flex and that choice of different places which can provide support and appropriate activities and things, that actually being able to say, "Well I've tried this and it didn't work, here's the reason why it didn't work, and then I was able to try this and it did, great. This is now a good quality life for my child, for me." They're speaking well of it and there has been that flex.

MD Yeah.

HT And that was an interesting interview in that the point of it wasn't highlighting that the first placement hadn't worked, it was that she'd had the flexibility to shift and that now it did, and that to me is a really good example of where you go, "This is suitably flexible", and it can work and really held up.

MD Well it's a good case study, isn't it?

HT Yeah, but I think it's an interesting one to put in conversation with the places where people are told, "Well if you want to do that this is the only place you can go", because that really limits, while in some areas there's some geographical reasons why that happens, so it's a case of well there physically isn't somewhere else, and combatting that takes longer. I think there's areas where that's maybe not so necessary, to put it bluntly.

MD Okay.

HT And that flexibility is something to hold up as an example where it really does work and can be emulated elsewhere.

MD It's a win-win situation really, isn't it?

HT That's correct, yeah.

DT We did come across a few instances where there's ongoing delays with Self-directed Support, sort of needs assessments, because say a child is going through the process of being diagnosed. So sometimes that doesn't happen quickly.

HT Yeah.

DT And some conditions are not that easily diagnosed anyway, so you have the sort of results that are a bit inconclusive and things like that, but that's all important because if they don't tick the right boxes they're not entitled to support. So that can be really frustrating for some parents because perhaps their child has not been officially diagnosed as autistic for example, but they know, they can see that the behaviours that their child exhibits, that they need certain support in place in the school environment, in the home environment.

HT Irrespective of what label.

DT Yeah, exactly. Exactly, but because they haven't officially got that label yet of autism they don't get that support in place, and quite often that's where relationships break down.

MD And there's something in that whole assessment then as well, isn't there? There's this kind of assessment tick-boxing exercising going on, and then there's this policy of Self-directed Support which is sort of at odds with it.

HT Yep.

DT Mmmhmm.

HT I think that's absolutely, and I think also thinking about a wider family context and other individuals' needs when we're talking about transitions has also been a really interesting part of that. So we had once instance where a respondent said, "I think they feel as though the health needs are being met because it's the family's responsibility for them", this is for the young child, "but who's meeting the family's needs then, because okay, her health needs were kind of being met, but I was up 24/7 looking after her. For my wee boy there's problems there. My wee girl", that's her older daughter, "she had to see a councillor because the more time I spent with my first daughter, the less time it was with her."

MD Mmmhmm.

HT And that not being something that an otherwise quite supportive social worker could accommodate, because there wasn't any flex to go, "Actually, there's about 3 people's needs here that I need to engage with and I have to do that and it has to be processed separately", and that sort of the tension in that.

DT And knowing that quite often parents can apply for a carers Self-directed Support budget as well, which is under the Carers Act in 2016, and we were coming across cases where ...

HT We had a focus group that was quite telling on that.

DT Yeah. We were coming across cases where some families were using the carers package to supplement the child's needs because the budget just wasn't in place at all or it wasn't ...

HT They were waiting for an assessment.

DT Yeah, they were waiting for an assessment and having these delays and things like that.

HT Or they wanted to use another facility that cost slightly more but was better for the child.

MD Okay.

DT Yeah.

HT And a better choice for them. So they spent their carers budget not on themselves ...

DT Sort of topping up.

HT ... but on topping up their child's budget.

MD Okay. Okay.

HT And we had a few people who were sporting that, and they do report that they were choosing to do that, but I'm not sure how meaningful that choice is, but also we found, and again I was quite surprised by this, that we had a focus group with parent carers and we had about fifteen people, and none of the participants had been offered an assessment for carers SDS budget in the entire focus group, within one local authority area. So this is specific to one area.

MD Okay.

HT But it's long enough after the introduction that I would have expected at least an offer, maybe in a waiting line. I wouldn't necessarily have expected all fifteen to have it but I would have expected some conversations around it, and there was absolutely no engagement with it.

MD No uptake.

HT And these are people who were regularly using carer centres, who engaged with the focus group that was facilitated through a local centre for parents with young disabled children. They're already actually part of the environment where you would expect that information.

MD Yeah.

HT They're not as isolated as we know some people will be.

DT For just clarity around how the process should work as well, because I think we were hearing about for the carers package it was almost like different departments were sort of shrugging off responsibility and saying, "Well, it's for the carer centre", and then the carer centre was saying, "No, no, it's thorough social work." So there was sort of, there's like uncertainty about actually how does the process, how should it work.

HT Equally I think one of the things that was really interesting in working with the third sector partners is for example one centre that operated to provide sort of supported work opportunities and activities for folk with learning disabilities with one local area where I did a number of interviews with folk, they had started off providing some limited day activities, but following essentially demand from their users they expanded out to now provide SDS support as a sort of option two, option three provider, as well as expanding activities, because people were basically saying, "Actually, this is really working for me. Can I get more of it?", and they couldn't without additional funding, but because in a way there was a sort of almost micro-commissioning, but everybody I interviewed there, without the staff present, you know, this wasn't like being browbeaten, although pretty much all of them had had problems with SDS in initial stages, their support from a third sector provider had then become this day-to-day part of their environment and was held up as, "Actually, this is great. This is really working because it's local, they know what our needs are, it's in the right area for me, the commute's fine, the range of activity is great, I can engage with x or y or z as best suits me." Parents who were supporting children to use the location, really happy. There's examples where this becomes really positive, and actually beginning to get word of mouth stuff where one interviewee was saying, "Oh yeah, I didn't know about this at all but we started going along to the centre and we were told by another parent and by the people working there, you should talk about SDS, and a social worker came out and yeah, easy", and actually that was the shortest interview I've done because she was just like, "Yeah, it's great. It's fine. I didn't really want to ask for anything but they came along and they said you can get x, y and z, and yeah, it's great." So it's putting that balance of here's where a small organisation can have quite a significant impact in its local area for people, but also I think it would be an interesting example of other ways of getting information in some ways, and I don't think that changes the responsibility for social work to have a significant amount of proper information given to people in advance, but multiple avenues are never a bad thing.

MD What's the next steps then, because will you be producing interim reports then around the themes of women, transitions and mental health? Will there be subsequent reports on that and when is the final report due as well?

HT So it's a bit of a staggered timeline. We're currently drafting up reports from the first two local authorities where we've finished work, so that's Dumfries and Galloway, and South Lanark. So we're doing the area reports at the moment and we're aiming for the end of this year to have some of those local authority feedback sessions, local authority reports done for those where the work is complete, and some of the thematic reports. The overall report of the first 8 and the subsequent second round of reports, we'll be talking next Spring.

MD Yeah. Yeah.

HT So that's sort of Spring 2020.

MD Okay. What do you hope then that people who are picking these reports up are going to do?

HT Two strands. One, we hope that the local authority feedback sessions will be quite specific discussions where they can take, so each report is going to end with recommendations. It will be, "Here's the experiences of people", because that's an important thing to just convey in and of itself, but it will also have specific recommendations, both around the individual demographic areas for the thematic reports but also for the specific local authority, and then overall trends for the overall report. Those will be relating to both local authority and Scottish Government. I know we've got keen interest in the findings from this from Scottish Government perspective.

MD Mmmhmm.

HT So we'll be definitely feeding back reports to them in individual meetings as well as print reports, PDF reports, whatever, but also that if we can have those conversations starting at local authority areas, that's something that then hopefully recommendations begin to get embedded within practice, and in some areas we've had folk approaching us from local authorities who are already going, "Yes, we know you're doing our local area but can we get an interim one because we're doing our planning already for the next three years and we want to include it? So even if it's not full findings", which is frankly what I'm going back to frantically continue typing, and to me that's really exciting 'cause it shows people are actually wanting to engage with the experiences of people in their area and respond to it in whatever way they can, and obviously this is operating within a wider environment of different pressures, but that feels to me what it should be doing.

DT And then overall by the end of the project I mean we're hoping that all of this data and analysis and the findings, that'll all go towards informing the 2021 National Strategy in Self-directed Support. So that's up for renewal so we're hoping from this project we can really influence what that will look like.

HT And wider work on then from adult social care and so many other sort of work programmes going on at the moment that SDS is connected to, that hopefully this can feed into as appropriate.

MD Okay.

HT And I know that in other areas we've had local authority contacts come forward and want to be involved with the project, which is great, but also say that they have identified a need to research and seek input from people but they don't have the capacity to do it. We fit really nicely within that narrative because we can provide the on the ground sort of seeking of this information, and then if they are able and willing to act on it everyone's winning, and that's the ideal. That's what we ideally want for this, and it's not that you get a perfect solution 'cause there are some things that are coming up that you go, "Well, there's not an easy answer", but there's things where there are small things or there are things where you can go, "Actually, if this is working here it can work there."

MD Yeah.

DT Mmmhmm.

HT And build off that.

MD Absolutely.

HT So that's kind of what I'm hoping for it. I don't know if you've got any other?

DT We've found that, because we are independent from local authorities as well, that people are more willing to talk to us.

MD Okay.

DT So we have had interviewees who've shared with us quite honestly and quite candidly about their experiences, positive and negative, about local authorities, but I think there are question marks about whether they would have participated if it had been the local authority themselves that went out to do that research, and would that have coloured the findings that then came over?

HT I think particularly in examples where there's been quite a combative relationship with the local employees, because that does happen.

DT Yeah.

HT There are absolutely examples of some really difficult situations that are important to highlight in and of themselves. Even if they're only happening in the minority of cases it shouldn't be happening.

MD Mmmhmm.

HT And that's also important to flag and to give some attention to alongside the more obviously constructive.

MD Yeah.

HT Does that make sense?

MD Absolutely.

DT Yeah.

HT I think in instances where trust is broken down that can't happen internally as easily. Whereas that's the other hope, that by us facilitating feedback sessions you can get multiple voices responding to what we find and maybe putting other suggestions forward and challenging it, and that's something that we're also planning follow-up work around, in that it's not just going, "These are findings, full stop." It's, "Here's our findings. What do you think?"

MD Yeah.

HT "What happens next?", and it's that sort of follow-on work is I think where the real impetus lies to be honest.

MD And these reports that you'll be producing are available on The Alliance website?

HT And on SDS Scotland's website.

MD And on SDS Scotland.

HT So mutual publications.

MD Great. So two places.

HT Two places to Google.

DT Yeah.

HT And the other thing we've been doing is, so the survey's available through a specific portal on SDS Scotland's website. It's also advertised on ours, but it'll redirect them to the SDS Scotland. We've also been running a helpline, 0800 170 1321, I've spieled that off a few times by now, which is available Monday to Friday, 9:30 to 4:30, and it was originally designed so that people could call us if they needed help with the survey, if they wanted us to fill it out online with them or over the phone instead of sort of dealing with the print version, but it's also become something where if people have questions about research they can call us, they can discuss it with us. If they want an update and they haven't found it on the website. If they want to be interviewed as well. It's being used for a number of things. I think actually that's been sort of an unexpectedly positively varied part of the research that I think we'd mimic with further material, because just it's another way of making it easy for people to say, "So what's happening with this?", as well as having a website portal where we're like, "X report is due on y date. Further information to follow."

DT Mmmhmm.

HT They can speak to a human being.

MD Which can be difficult these days.

HT We'd be very keen to hear from people who would be interested in being involved in the project, even whether that is as people who use SDS or whether that's people who, please excuse Merlin as he seeks attention by wagging his tail and collar against the chair, but we'd be really keen to anyone who'd be keen to be involved from any angle, whether that is comparative research that people are involved in, other areas, or sort of thematic groups that people might have contacts with, local authority contacts. If you're interested get in touch. I'm at hannah.tweed@alliance-scotland.org.uk. Dianne's dianne@sdsscotland.org.uk, and we're both Google-able. So we'd be very keen to hear from people.

MD Okay. Brilliant. Well thank you both very much for coming in to speak about this research. I think it's a really important piece of work, and best of luck with the next year or so of work with it.

HT Cool. Thank you.

DT Great.


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