Transcript: My Support, My Choice

Podcast Episode: My Support, My Choice

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
DJ - Lucy Mulvagh
DM - Donald McLeod

My Support, My Choice is a research project led jointly by the Health and Social Care Alliance and Self-Directed Support Scotland with the aim of understanding people’s experiences of self-directed support in Scotland. It was funded by the Scottish Government. Between November 2018 and February 2020 over 600 people who received self-directed support or had been assessed in the previous 12 months took part in this research. The full report as well thematic reports have now been published. We spoke to Lucy Mulvagh, Director of Policy and Communications at the Alliance and Donald McLeod, Chief Executive of Self-Directed Support Scotland, to get an overview of the scope, findings and recommendations of the research.

MD Thank you both, Lucy and Donald, for speaking to me about the My Support My Choice research. I’m aware that the final report has now been published and Iriss spoke to the project leads last year about the initial findings of this research so I thought it would be a really good opportunity for us to catch up on the final report. And this research is all about people’s experiences of self-directed support in Scotland. Can you just tell me, first of all, what did the research set out to achieve?

LM Well the aim of the research was to get a better understanding of people’s experiences of self-directed support across Scotland with a view to identifying what’s working well and what doesn’t work so well. So, to help therefore inform and influence policy and practice but one of the additional aims was also to fill a data gap and complement other independent reviews of self-directed support. So, at the time of gathering the data and producing the national and now a suite of thematic reports are out, as far as we’re aware it’s the largest direct consultation with self-selecting respondents who access or have attempted to access self-directed support in Scotland.

DM I think it covered a wide aspects of SDS including things like information about SDS informed choice and control, communication in relationships with social work, the impact of SDS on family and relationships, mental health, recruitment of care staff, with training of staff and quality and independent advocacy and support.

MD Yeah, so it was quite comprehensive and we might explore some of those themes a little bit more as we get into the interview. Can you tell me who was involved, I know originally there was an advisory group set up and everything and was that something that kept going, and who else was involved across the project?

LM Yeah, so we were advised by a voluntary project advisory group that was comprised of representatives of local and national organisations involved with SDS and people with lived experience of accessing social care and SDS themselves, from a range of local authority areas and with a breadth of their own experiences. The project was led by a partnership between the Health and Social Care Alliance Scotland and Self-Directed Support Scotland. Both of our organisations had independently carried out similar research in 2017 but what we wanted to do was, we wanted to, this time combine our efforts so by doing so that we could make the project much bigger and more comprehensive and as a consequence of doing that in the end we were able to hear from a lot more people so overall we heard about the experiences of 637 people through a mixed methods project that included a survey which could be completed online but also in hard copy. A range of one-to-one interviews in different local authority areas and a suite of focus groups with particular population groups. The research itself was carried out by two lead researchers employed by the Alliance and Self-Directed Support Scotland. We also worked with a group of care researchers, so these were people themselves who had experience of SDS and they helped carry out interviews and focus groups and last but not least, we were also greatly assisted at different stages by Q-Step Research interns from Glasgow University.

MD Grand, okay. And how many local authorities were actually involved?

LM Well we started off, we carried out up to ten one-to-one interviews in ten local authority areas and some local authority areas were also very helpful in terms of helping to disseminate the online survey to their own networks and so on. So, as well as the national report and the sematic reports that are published today, actually 16th of December, that look at the experiences of particular population groups. Next year we’ll also be publishing a group of local authority area reports but we’ve had to postpone that because of the pandemic and the impact of the pandemic but also because we intend publishing them to accompany a series of local feedback reports but we’ll come on and talk about that later, I think, Donald has got more to say on that. And I think Donald, you’ve got more to say on who else we engaged with.

DM Yeah, I mean Lucy had mentioned the focus groups and some of these … I think, I’m not sure Lucy, but there were something like nine focus groups. These were around the areas like homelessness, visual impairment, learning disability and really so that we covered seldom heard voices, in terms of who engaged with us, if I was asked about if it achieved what it set out to, I’d say yes in so far as we represented all the data that we had to hand though Lucy mentioned the local authority input there so it represents a wide range of demographic experiences but we only represent those local authority areas that were able to engage with us at the time. So, there’s more work to be done on an ongoing basis at a local level and that will start, I suppose, with the publication of the local authority reports and the feedback sessions next year.

MD Can you give me an overview of what people’s experiences of self-directed support was, if that’s not too general?

LM It’s a really good and it’s a really important question, isn’t it? I think it’s fair to say that the short answer is, very mixed. People’s experiences are very mixed. I think one of the key findings are overall from the research is that most people impact around three quarters of the people that we heard from, reported that SDS did improve their social care experience. So, what’s clear from the research is that, when SDS works well, it really can be life changing for people because of the choice and control it gives them. You know, one person that we heard from described the ability to decide for themselves as liberating. However, I think it’s also true to say, looking at the findings and our analysis, some people we did hear from had very poor experiences due to problems with different elements of SDS. So, as Donald has explained earlier, we did ask about people’s experiences across the whole piece and so our research heard from people who experienced problems in all of the areas that we explored whether it was information about SDS and budgets, the amount of informed choice and control they could exercise over their SDS, issues around things like waiting times, lack of information about all four options, lack of budget management control perhaps and degrees of inflexibility about people’s views of SDS and what they were able to use SDS for or not, lack of access to respite and so on. We did a lot of research about people’s communication and relationships with social work professionals and experiences were quite mixed there as well. We heard about mixed experiences of the impact on family life and relationships and people’s mental health. It’s not really rocket science but what the research does is, it actually puts voices to some of the assumptions that we could make again about SDS is that when it works well, it worked really well for families and for relationships and for homelife and for people’s mental health – but when it’s not working well, it can really damage those things. As Donald’s already mentioned, as well, we’d asked about people’s experiences of care staff recruitment and there were mixed experiences about that, particularly around things like PA recruitment, but also the quality of some care staff and last, but not least, people’s access to sources of independent advice and advocacy which are really vital independent services for people that make a real difference for them and so we made a series of recommendations about what could be done to improve that.

MD Yeah, because I suppose, one of the assumptions that could be made is that everybody would have equal access to self-directed support but that’s not the case.

DM No, that’s an important point. One of the really important things that we heard and one of the important groups, if you like, that we heard from were people who experienced poverty. An estimated 24% of Scottish households with a disabled person live in relative poverty after housing costs and 61% of the research respondents who provided income data lived below the poverty threshold so it was really important to capture their voice. There’s a risk that reductions in SDS budgets and tightened eligibility criteria can negatively impact on people with low incomes who are either access or trying to access social care, given that this can lead to people having to manage either without support or deteriorating mental health and demands on family and friends to assume roles such as unpaid carers and I think one of the other areas that was really interesting to hear about was the recruitment of personal assistants, it’s a minefield for individuals. One of the things that SDS Scotland’s working on is an online resource for PA employers that will be launched in March so, building on the … there’s handbook that was published several years ago that became outdated and this resource on accomplish … there’s a very wide range of local variations in SDS policy and practice across all of the local authorities so, it will mean that individuals and PA employers that are individual support organisations alike, will be able to more confidently address this very complex area.

MD And the success then of self-directed support, likely depends on the relationship that the person will have with the practitioners. Was the importance of the relationship reflected in the findings?

LM Yeah, absolutely. So, relationships and communications that people had with practitioners and professionals was a focus of the research and in the national but also in the sematic reports as well there’s a separate chapter dedicated to this. And again, I mean it seems pretty obvious but it’s so important that actually we have gathered that quantitative and qualitative evidence directly from people about their experiences. People say that good, consistent, trusting relationships with social workers, clear lines of communication are absolutely essential for positive and effective experiences of SDS. For example, we asked survey participants, how happy are you with the conversations you have had about your support with professionals and we had 434 people answer this question: of whom, 56% said they were either happy of very happy and in interviews and focus group many people reported positive and favourable experiences of for examples, assessments and reviews with professionals and there’s a lot of quotes as well directly from people to this effect in the report, for example, “one person said our social worker really took time to get to know our family and spend time in the home. We never felt she was in a rush to get in and out or to just tick boxes. She had a really friendly, comfortable and confident manner and is always really available to us to answer questions.” And somebody else said, something along the lines of, “she was really friendly, very proactive with a common-sense approach. She got where I was coming from and I really respect how honest she was about getting everything I wanted and needed. She was straight with me but very upbeat and determined.” But obviously the flip side of the coin of that is that other research participants quoted less positive experiences and some of the concerns centred around, for example, not receiving full answers to questions raised during assessments and if you remember the stats, that I shared earlier on of those 434 people who answered the question about how happy are you with your conversations, 1% stated that they were very unhappy or unhappy. Some of the concerns centred around not having enough time to meet with people, not having enough knowledge, in-depth knowledge about SDS and therefore not being able to really properly discuss people’s questions and get really good answers to their questions. And unfortunately, although rare we did hear several quite troubling stories of people really being treated quite poorly with disrespect and even worse by some practitioners and professionals so a couple of examples of quotes from the report would be things like somebody saying, “I felt like she wanted me to fit into a box, she didn’t listen to my individual experiences and struggles. At a review I mentioned I’d like to look at other options but was told that no other agency would be able to fit in my hours and that it would be more expensive to go elsewhere. I felt like my interest in exploring other options was ignored.” And somebody else said something along the lines of, “Having a fixed view of how my needs could be met and refusing to accept and give effect to my rights as a disabled person, I live in my own home and choose the level of risk that I’m comfortable with.” Another quote was that somebody said, “My care manager was misinformed on SDS and although was saying SDS was person centred, they were using the old system. My care manager even took the mickey out of me in her team with someone else and accidentally sent it to me in error which was scathing and rude.” And as I said, we are publishing a series of thematic reports today looking at the different experiences of, particularly, marginalised and seldom heard groups and one of those is focused on the experiences of black and minority ethnic people and people that we heard from in the community, in particular, highlighted problems with cultural awareness amongst practitioners and professionals some of their concerns included service users and carers maybe not sharing a common language and they recommended things like organising effective diversity and awareness raising for staff and better practices in order to ensure that culturally, religious appropriate food, for example, is accounted for but overall I think people would generally welcome more transparency about how decisions are made. Much more inclusive communication and easy access to information, for example some people maybe require paperwork in different formats, that despite repeated requests it was very hard to get hold of that and so on and so. There is so much rich information in these reports that I really would recommend people take the time to work their way through them.

MD Yeah, and while some of the feedback was perhaps negative as regards the practitioner’s relationship with the service user, it’s probably more reflective of systemic problems perhaps or cultural problems within organisations rather than maybe just the individuals themselves being at fault.

DM One of the recommendations relates to the education of practitioners and it’s around there being a wider pool of professionals both in health and education, that should be educated about SDS and able to signpost people to social work and appropriate resources so that includes professionals working in addiction, housing and homelessness services. It’s something we’ll maybe touch on later but SDS isn’t specifically on their curriculum for social workers as students, given that it’s the way that we pay for social care in Scotland, so there’s more awareness needed of the benefits of things like brokerage to social workers. It doesn’t always mean that the social worker provides all the support and information but there is a job to be done in raising the profile of things like brokerage, independent support advocacy so that people are fully informed when they’re making their SDS choices.

LM And I think the question that you raised, Michelle, about system versus individual is incredibly important and very pertinent to this. And certainly I think it’s both systemic change that needs to happen but actually we did hear from, all be it they were very rare, but we did hear some very troubling experiences by individuals involving very troubling behaviour, attitudes demonstrated by specific professionals and practitioners and I mean, I won’t go into them in detail in this interview, they’re in the reports for reading but certainly, you know, one of the issues then that that gives rise to is the question of accountability in the system and I think that’s, as we’ve seen, from the work so far of the independent review of adult social care being carried out by Derek Feeley, accountability in social work and SDS, more specifically, is going to be one of those areas of focus for the review and I expect there will be a number of recommendations out of that, as other reports have already demonstrated. For example, the SDS sematic review by the Care Inspectorate and last report from Audit Scotland, both of them have also picked up on how possible it is to actually monitor the progress and positive impact of SDS in the absence of effective data gathering and monitoring for example it’s not possible to chart how much SDS is doing to help people achieve their personal outcomes because the Care Inspectorate doesn’t have enough evidence of that, the evidence isn’t being gathered and our research certainly found as well that we fell that there are some serious data gaps in SDS and that national and local public bodies could be doing more to (… unclear) the data that they’re gathering but also the intersectional analysis of that data in order to find out what the experiences are for different population groups, and therefore ensure that tailored solutions and responses are found to be issues that are of concern for the rights and requirements of those different groups.

MD Just to move on then to some of the recommendations. There’s many recommendations across quite a few themes in the research. Could you highlight a couple of the key recommendations from each theme if possible?

L There’s 66 recommendations in the national report and there are many recommendations in the thematic reports as well and what we’ve done is, we’ve tried to be … some of them are quite broad and quite general but some of them are quite specific targeted and whether it’s in systemic change that’s needed, whether it’s specific actions that are needed for particular population groups, for example, or whether it’s about targeting, as Donald referred to earlier, perhaps some practices and so on for particular practitioner groups or professional groups. And so, the recommendations could be read by public bodies, both at the national and at local level with a view to like making improvements in their practice team. What may be relevant for them and what action might be required so, for example, with regard to communication and relationships, we want basically the system to be changed in such a way that social workers do have the time and skills to build relationships and trust with people who are accessing SDS and unpaid carers that they’re working with because we know from the research that when that happens, that really works incredibly well for everyone. We’ve also recommended things like if social workers change, that people are informed promptly about that people do have a right to and can exercise the right to request a new social worker if trust and relationships have broken down. We think that it would be a really good idea if professionals could proactively, regularly gather feedback from people who are accessing SDS, families and unpaid carers, as way to support continuous improvement as well as informing people regularly about how they can challenge any decisions at any point in the process, for example, by signposting and accessing to independent advocacy and support, the local authority complaints procedures and of course the independent oversight of the ombudsman and I think to address instances where we have seen people report really unacceptable behaviour and attitudes, we’ve recommended that there needs to be appropriate training and ongoing support about things like, equalities, human rights, intersectionality, conscious and unconscious bias, anger management and so on. I’ve already mentioned that the recommendation about the really pressing need for local and national public bodies to improve systematic and robust aggregated data gathering and intersectional analysis because of the concerning gaps there but I think the reason why this is important is, is not just about gathering data and analysing it just for the sake of doing that and for ticking a box to say that we’ve done that, but actually if, equal access to social care and SDS is at the heart of it and at the heart of the SDS values are the human rights principles of equality and non-discrimination participation, inclusion and you have to do the data gathering analysis work in order to actually provide indicators that that is one of the things that you’re doing, markers against which you will then continually improve, assess yourself and continually improve everybody’s access. There’s a few other recommendations as well, isn’t there?

DM Yeah, I think for me the one that really jumped out, the difficulties that people have accessing information and not knowing where to go. So, one of the recommendations that we’ve made is that there should be a free independent, accessible national help line and or designated contact for any questions about SDS. That would be really useful to people accessing or seeking support, just one identifiable place to go.

LM Yeah, I mean I would say that is that I think it’s true that what works for people is when practitioners have a really good breadth and depth of knowledge of SDS, and if they don’t then that causes all sorts of problems basically, both for the practitioners themselves and for the people that they’re working with but even if practitioners are fully informed and have a great breadth and depth of knowledge, there’s still a role and a very important role to be played in the independent sector, so by independent advice and support organisations and by independent advocacy organisations and they’re providing a vital service for people and there’s examples in the report as well of when people have used them and in fact I think one person’s quoted as saying something like, “the social worker was hesitant and uncertain but after the meeting which an independent advocate was also present, they came out saying how brilliant it was, how they really now understood about the role of an independent advocacy and the value and benefit that it brings.” So, actually it’s about seeing this as being part of a system that makes it all work better for everyone but of course those services can’t exist without adequate resourcing and we need to ensure that again, that everybody’s got equal access, equal awareness of those services, equal understanding of what those services can bring and access to them.

MD Uh huh and building the evidence base, as you say, is really important so that people can actually learn from what’s happening elsewhere as well.

LM Yeah, absolutely. I think it’s fair to say, as I said at the beginning, we undertook this research because there was a gap in the data so I think there needs to be systematic rather and robust data gathering about people’s experiences of SDS. Now that can be all people, practitioners, independent advice and advocacy sector, people who are accessing SDS, but the experience as well people trying unsuccessfully the access social care and SDS, unpaid carers, family, friends and so on and that’s something that needs to be done both at the local level but also at the national level as well. I mean at the moment the data that’s gathered by local authorities or health and social care partnerships and then shared national and published on the ISD dashboard for example, which is one of the main national portals where you can go and find out information. We found gaps there about … not only about perhaps, you know, people’s (… unclear) characteristics, so for example, there doesn’t appear to be data being gathered about people’s religious affiliation, identity. There are problems with how people’s ethnicity is being recorded and the opportunity to do some intersectional analysis is very, very challenging and the thing is, is that organisations like the Alliance and Self-directed Support, we have some, albeit very stretched resources, do work like this but this is the start, I think, and what we really want to see is, we really want to see this taken off now and at the same level as there’s being data gathered at local authority or partnership level about how much money is being spent on SDS, which conditions specific group people may identity with, it’s also about their experiences and questions like, what’s your relationship like with professionals, how long did you have to wait for your package to be in place, have you been able to use your SDS to access respite, are your travel costs accounted for in your SDS budget, or not, are your PA’s travel costs accounted for in your SDS budget or not. There’s all sorts of different aspects about people’s experience about SDS, it’s so important that we capture this data on an ongoing longitudinal basis, that’s the way we’re going to know if it’s actually improving people’s lives or not.

MD Yeah, and it kind of leads me on to my final question really which is around, will this research and evidence, and I think it will, feed into the review of adult social care? Because I think that’s going to be really important, going forward. So, in what way will it feed in and what are the hopes for its impact?

DM I think the report has been widely well received. We launched it prior to the Self-Directed Support Scotland AGM and that featured the current adult social care review and the social work standards so, Derek Feeley has been involved in that. At present we’re involved in the work streams relating to the Social Work Scotland practice statements that will sit behind the standards and it’s been really encouraging to know that Social Work Scotland are committed to taking on board all 66 recommendations and the implementation of the standards. So, we’re working very closely with them, we’re also working with the SDS leads at a local level and national to see how we take the recommendations forward and Lucy and I are certainly going to be engaging with them early in the New Year to see how we address the recommendations in the report. For our role, what happens next is important. It’s one focused on quality, supporting quality improvement and standardisation in all aspects of SDS implementation whether it’s from brokerage, PA employment issues that, as Lucy said, to effective independent support and regulation. We’re going to be undertaking a co-produced approach to quality improvement within localities, supporting the ongoing gathering of the kind of data gathered in the reports so that these individual experiences, more importantly have a direct means of informing policy in a systemic way but these important stories, not just that they’re gathered but they actually affect quality commissioning and so on.

LM And I don’t want to, obviously, for this to come across as being all doom and gloom. The fact is, is that this was, I think, a fairly robust bit of research and we gathered positive as well as negative experiences and so several of our recommendations in the report are do more of the good stuff, there’s evidence from different bits of the system, different parts of the county, where things are working well for people, and they’re very happy to talk about that and say so. What do we then need to do to try and ensure that that can be cascaded across all population groups, across all parts of they system and across all parts of the country and there is a real opportunity as Derek said in the independent review, Derek Feeley is aware of this report we’ve submitted this, will be sending the review panel the thematic reports today as well, once we’ve published them and I think that basically our recommendations, I would imagine, will probably align with some of the things that will be coming out of the independent reviews recommendations. In many way’s I think what people will see when they read these reports, from My Support, My Choice, much of it will not necessarily be new, I think much of the content will be things that people are already aware of, either through their own experiences, through what they witnessed with others and through anecdotal evidence. What this does is this takes us beyond the realm of anecdotal evidence and it provides us with a starting point for really important research that’s a piece of the jigsaw, it’s not the be all and end all but it is an important piece of the jigsaw of what we need in order to make sure that people’s experiences of SDS matches the ambition, legislation and the guidance and really what I think people who are responsible for delivering SDS want to see as well. I think most, if not everybody involved in this project want everybody to have good SDS experiences. It’s just that question of bridging that implementation gap of making sure that that legislation and that policy (… unclear) will experience it in their day to day lives.

MD I think that’s probably a really nice place to end and thank you both very much for your time.

DM Thanks for asking us to do this, Michelle.

LM Thank you, it’s our pleasure.

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