Partnership working with service user and carers in social work education and beyond
For those who don’t know, service user and carer involvement in social work education has been mandatory for 15 years now. Students and graduates value this highly. There is a lot of learning to share, transferrable to educators and practitioners working across a range of public services, and relevant to policy-makers committed to mainstreaming person-centred – or person-led – approaches and real partnership working.
On 17 April 2018, over 80 delegates came together at the Grassmarket Community Centre to attend what proved to be a great day, with lots of positive feedback.
The programme had been co-designed and delivered by members of the Scottish Inter-University Service User and Carer Network, and Iriss, with the group made up of service users and carers, students and academics.
Jonny Kinross, CEO of the award winning Grassmarket Community Project, provided a warm welcome, and outlined that we were here to:
- Celebrate and learn from the 15 years’ experience that social work education has in working with service users and carers in Scotland
- Support international knowledge exchange, with contributors from Sweden and Belgium
- Promote and transfer some of ‘what works’ into new areas
- Look to the future, asking: what’s next for service user and carer involvement?
This report shares some of the key messages.
Sally Witcher, Inclusion Scotland
Sally, CEO of Inclusion Scotland, had been asked to place service user and carer involvement in its wider context. She did this from the perspective of her own organisation. Sally was keen to stress that Inclusion Scotland is a user-led organisation, led by disabled people, for disabled people – ‘unlike other organisations who nonetheless seek to represent us.’
Inclusion Scotland works to achieve positive change in three ways:
- Influence decision-makers – bringing together policy makers with disabled people to hear their views and lived experience
- Support disabled people to be decision-makers, politicians and policy makers – ‘because it’s not good enough being on the outside trying to influence power.’
- Develop capacity, awareness and engagement – ultimately, so that people are decision-makers in their own lives.
Sally also stressed that how people understand disability, will determine their response to it. The medical model says that what causes disability is an impairment or a deficit – ‘so fix the impairment, fix the person!’ The social model, on the other hand, says that it’s social barriers that stops you from being included. ‘So, I am disabled, not because I am in a wheelchair, but because people will insist on building buildings and sticking steps in front! I am disabled by peoples’ low expectations….‘ She also highlighted ‘the personal tragedy’ model: ‘This is the one that says disabled people are tragic victims, but also heroic survivors – awfully brave! And it is incredible patronising. Some activists have referred to it as inspiration porn.’
And, of course, ‘disabled people are not just disabled people – although we are very often talked about as if we had one characteristic… We also have a gender, a sexual orientation, age and all the rest of it!’
Clearly, what is of relevance to disabled people, is of relevance to a multiplicity of service users and carers. This is about human rights and about independent living. Article 19, Universal Declaration of Human Rights, Sally remarked is about ‘... rights to full and equal participation, right to choose where you live, access to different forms of support including personal assistance and community services that are available to everybody on an equal basis.’
As for independent living, ‘this is a really important concept for us, so what it means is that we have the same freedom, choice, dignity and control as other citizens – at home at work and in the community, but what it doesn’t mean is that you do everything for yourself!’
Current debates around social care and support, have emphasised that we need to be very clear about what we think it is for. ‘So, is it about simply keeping people alive, or is it about having a life?’ Sally said to everyone there. ‘We think it’s the latter.’ Investment in people is needed for this.
Sally’s take on some things that need to change
- The language – ‘We don’t want it to be person-centred, because we don’t think that person-centred necessarily means that person has any say…it can be other agencies deciding on all aspects of your life. We want it to be ‘person-led’ .. and I think that’s a really important shift.’ She also dislikes the use of the term ‘care’ – it’s everywhere, from social care, to carers, to the Care Inspectorate. She prefers ‘support.’
- More co-production – this is about how people participate, not consultation, but equal partnership involving different people with different experiences, all brought around the same table and involved from the very beginning.
- Portability of care – social care is locally determined, and if you move, you lose your care package and need to sort out another.
- The reality has to catch up with the rhetoric – in Sally’s view, social care is losing out to health in integration, and the ambitions of self-directed support have not been delivered upon, with implementation patchy, and more investment needed.
- Balancing power – ‘If you start protecting people who don’t need protected, you are disempowering them. If you are empowering people who do not have the resources to exercise that, then that becomes a problem too.’
- Risk – We have a risk averse culture – so while people need to understand what the risks are and have good information, ‘if they choose to go bungee jumping, that’s entirely up to them! … We all have a right to make thoroughly bad decisions in our life… That’s one way of putting it.’
- Action across different policy areas – Human rights and independent living can’t just be delivered by social care – though it has a critical role: 'because in order to have freedom you also have got to be able to use public transport, you’ve got to be able to do all those other things!’
You can listen to Sally’s presentation in full, including questions posed to her by the audience.
A new initiative – People-led Policy project
On the day, we heard that Inclusion Scotland are leading the delivery of a new flagship project, funded by Scottish Government for 15 months and supported by two posts. This aims to place people who use Adult Social Care Support at the heart of policy developments on social care. Once up and running, it will recruit ‘a go to group’ of people with diverse lived experiences of social care support – not just disabled people – to support engagement and work with key external stakeholders to ‘deliver better policy.’ We are also told that, critically, it will have a direct channel of communication to the Cabinet Secretary.
Eight stories of service user and carer involvement in social work education
Social work courses are taught at eight universities in Scotland: The Open University, Robert Gordon, Dundee, Edinburgh, Glasgow Caledonian, Stirling, Strathclyde and the University of the West of Scotland.
While no two universities teach social work education in exactly the same way, service users and carers are involved in all. Elinor Dowson, one of the event planning group members, and a carer, explained that the Scottish Inter-University Service Users and Carers Network came about through the loss of its funding. The individual universities are now responsible for costs, stressed Elinor, and play a critical role in boosting morale – when service users and carers don’t feel recognised or valued by funders for their expertise. ‘If any of you sitting here have a pot of gold or know someone else who has or you would like to connect with us in a way, please don't hesitate to get in touch!’
Of course, the network also exists to share good practice and make wider connections, which is what the event was all about. Eight stories from the eight universities were told on the day, grounded in context and experiences to ‘keep it real'. Stories were told by service users, carers, students and academics, with people having the opportunity to ask questions and steal good ideas!
Stories on the day included service user and carer involvement in:
- Critical reading, to help shape the social work curriculum and create audio content
- Recruitment of students and induction
- Inter-professional conversations, bringing together service users and carers with students on a range of social work and health programmes
- Service-user led organisations and activism
- Care experienced young people’s role in the selection of social work students, sharing their lived experience and widening access to HE
- Role-play and/or professional skill development with students around real-life issues
- Welcoming students to ‘their communities’ to work alongside them, or attend residentials
Iriss and the Scottish Inter-University Service Users and Carers Network have been working together to develop these stories as an online resource. They will be ready by Summer 2018.
ESF project – service user involvement from education to labour market: Experiences from Belgium
Co-producing courses, focusing on poverty
Kristel Driessens, is head of the centre which does practice-based research at Karel de Grote University College in Antwerp. She is also coordinator of Bind-Kracht – an organisation which stands for Bonding, Bridging and Empowerment of People in Poverty.
She began by highlighting what she felt was important about their approach, and pondered that this might be different to how we do things in the UK?
‘We focus on poverty, the problem of poverty … and we focus on the experiences with social exclusion. … We consider this a structural problem, a social problem.'
Kristell also talked about previous training she had been involved in, which saw people with lived experience of poverty, come in to share their experiences with social work students and leave. However, this left them wondering what students were taking from it?
So, with two year’s funding, researchers, lecturers and those with first-hand experience of poverty worked together to deliver something different. First off, the lecturers and experts by experience created two courses together, one on family centred social work in child care, and another on communications. We heard that within this, service users share their experiences and perspectives, with opportunities for real conversation and deep dialogue in a safe environment for students. The feedback from students is also extremely positive.
As Cindy, one of the experts-by-experience, explained:
'It’s also important for students to learn to see the reality of living in poverty and I want to make it clear to future social professionals that they have to make time to really listen and to gain a greater understanding for a client’s whole situation and not for little pieces of the situation. And I also want to learn from the students in the course because that’s important, that I not only give to the students but I can get things back from the students and that’s important for me.'
Sharing what makes us human
Going into more detail about the six-week Counselling/Communication course for 3rd year social worker students Wendy, a lecturer in the social work department, described how this works:
'The first two sessions focus on the perspective of the client and the perspective of the student as they are ‘becoming a professional.’ Cindy, talks about her life, her vulnerabilities and strengths, her experiences with social work.'
'Her story is told through the form of a genogram (this is a pictorial representation of a family tree, with information about relationships). So, we draw the genogram of the family context of Cindy and we add some important situations during her life and she talks about it and if necessary I ask questions and students also can also ask questions at Cindy. They can reflect on what she’s telling and they can interact with her. The reaction of the students is … you can see on their body language that what Cindy is telling really touches them. On one side is really confronting, on the other side it’s also recognisable for some students what Cindy is telling. Cindy is also very young, so she’s not much older than the students so that’s really a good connection between them.‘
However, we are told that’s it’s the next step that’s really challenging for students. They are asked to draw their own genogram and reflect on their own family context and relationships- good and bad. They then sit in small groups and talk about their family contexts.
‘And the purpose of doing that is that we want to teach students that everybody has a story to tell, everybody. But at first, many of the students aren’t keen…. They think it’s really not safe to show their vulnerability but because Cindy was there and she already told her story, it was really supportive to the students to open up, it really helped.‘
‘I see that students are very afraid of asking deeper questions, they’re really on the surface but when Cindy gets in the group she asks the questions that needed to be asked and student are “Oh, you can ask those things … it’s not a problem?”, “No.” and students find it really comforting to know that Cindy was interested in their story and I think it’s the same with clients, when you stay on the surface and you don’t go deeper, clients feel that 'Oh, maybe my story isn’t interesting enough.'
So, now we have a course where there are three kinds of experiences next to each other. There’s experience of the service user, the experience of the students and the professional experience of the lecturer. So, that’s really for me the added value of the course, the three experiences next to each other, equal to each other.‘
An audience member was keen to find out if people like Cindy get paid for their input to courses, and if they do, what rate they get and whether it interferes with benefits? The short answer is that, 'yes' they get paid, but at a 'volunteer rate,' not the same as the academics. Volunteering legislation in Belgium allows people to to get paid over and above their benefits. 'So it's ok to work or volunteer at the university for six weeks, get paid and it doesn't interfere with your benefits?' the questioner double checked. 'Yeah' is the answer.
'Well that's really good because in this country - and I can speak for Scotland - people are frightened to volunteer because in Scotland it interferes with your benefits - and if you get put off your benefits, it's very hard to get back on them... and that's the reason we don't have so many volunteers as yourselves unfortunately. We would like to have a lot more volunteers but as soon as you mention it people get petrified that their benefits are going to be cut. And that's really not good because it has an impact on their mental health, and eventually if we did have legislation like you.... I think that's maybe something - well, I don't know with this government - but maybe the next government would have a look at it.'
International knowledge exchange
There is to be a book published in Autumn 2018, mapping and analysing the different models of service user involvement throughout Europe. Vicky Lyssens-Danneboom, informed the audience that this will pay attention to vision, the values of co-production and co-learning that takes place, plus the role of service users themselves- their employment status and payment for their input. The book will contain an entry from Scotland from the University of Dundee.
PowerUs Network – Gap mending in social work education and research: Experiences from Sweden
‘Mending the gap’
PowerUs is an international network of social work teachers, researchers and service users that has been on the go since 2011. It started when Lund University, together with colleagues from Lillehammer in Norway, and Shaping Our Lives UK managed to get some EU money to support their work. Scotland is one of its newest members!
Cecilia explained that they are all about ‘gap mending’ – bridging divisions between teachers, researchers and service users. It’s not a formal organisation, but ‘a network’ Cecilia stressed– ‘to be part of it you can’t just think service user participation is a good idea, you actually have to do it!.. ‘Why should we mind the gap when we can mend the gap?’
‘Mend the gap’ is the slogan on the PowerUs T-shirts everyone wears, with this designed to make them more visible on the international circuit and help promote their approach.
In terms of the kind of gaps that typically exist, these are: between service users and providers (often because of power differentials); between professional and experiential knowledge; and between researchers and research subjects. Of course, there’s also the gap between needs and resources!
We heard from Cecilia that ‘you need to start by asking: what in your practice makes the gap, and what mends it?’ She went on to say that this includes consideration of what roles service users take on in organisations. The two following examples, show what this can look like in action.
‘All students together’
Arne, an academic at Lund University, gave an account of their ‘mobilisation course’ – a six week course that has been running from 2005 at the School of Social Work. On it there are social work students and students from service-user organisations. They all receive 7.5 university credits for completing it.
Quite often, those from the service user organisations have little or no qualifications, ‘but our goal is to create a course on as equal terms as possible, so we treat all students the same way, we have the same demands…’ Arne went on, ‘In Sweden we have something called commission courses, which is a way for a university to help companies or municipalities to develop their services… and we can make an exception to the normal admission rules.’ It makes it possible for people who would otherwise be excluded from a university education, to participate.
In the first two weeks of the mobilisation course, teachers and all students, work towards delivering a 50 minute presentation on why they think social work is important – and what in their own life has led them to the course. We heard how social work students might talk about being shy or bullied in the past, or that their parents had alcohol problems. We heard that those from the service user organisations, brought their experiences of being clients. It’s also interesting that it’s a diverse group, with most social work students on the course, female, and more students from the service-user led organisations, male and on average 20 years older.
“And that’s gap-mending... that we meet as people; it’s very important that we came out of the roles as service users or social work students or as teachers, so we meet in a personal way.”
Jenny, another academic, added:
‘We have much more similarities than differences, and we all struggle, we all meet up with problems. We do it in different ways and we want, most of us want to be met with dignity and respect.’
We heard from Arne, how when the course started, there were two groups, but by the end of the first two weeks, they had become one! This was achieved through doing things together, including taking part in a Future Workshop – a two-day residential in the countryside. At this project groups developed ideas about how to improve social work, then took the next fortnight to work up plans.
It should also be mentioned that during the course, students get lectures on power issues, discrimination, social mobilisation and co-production – so this is all framed within a theoretical context.
The University of Lund took the conscious step of championing the Housing First model and encouraged municipalities in Sweden to pilot it, with Stockholm and Helsingborg being the first. The evidence from elsewhere seemed to show that it was successful in ending homelessness, but it challenged existing step by step or ‘Treatment First’ practices around recovery from addiction. So, rather than asking people to conquer their addictions or secure a job before being given a house, it gave them a home straight off, stabilising them and aiding their recovery. Marcus, one of the academic researchers added:
‘I think the important lesson here is what is the university's role in society? And this might not be the normal one because normally researchers like me, we would just publish in peer-review journals … Doing this work doesn’t get a lot of credits, but we think it is more important, or equally important, very important.’
In the planning of the conference and following dissemination of positive impact, two people with experience of homelessness were part of the University research team. We heard how personal stories of impact resonated with politicians to achieve traction.
One of the team was Bosse, ‘an expert-by-experience’ and champion of Housing First, having experienced the difference it made to him personally. He also happened to be a student on the mobilisation course! As part of the course, students were asked to consider how the Housing First service in Helsingborg could be optimised. Bosse’s idea was to form a peer support group for people like him recovering from addiction. This became known as Group 7. Bosse explained: ‘It’s a group, we meet every week and we support each other… G7 means a lot to us who want to go on with our lives.’ Through this, Bosse is now employed as a peer support worker with Housing First – which takes us back to Cecilia’s point about service users taking on different and valued roles!
What next for service-user and carer involvement?
The final workshop of the day started with service users and students involved in the Inter university group sharing their dreams. This was around what social work and social work education should look like in the future. Jim Bell kicked this off with a nod to the great Martin Luther King.
Participants were then asked to use these as an inspiration to write down their own dreams in their small groups.
There were some recurring messages from these dreams. The first core message was to have people treated equally, and this was expressed in different ways:
- ‘I have a dream that we stop seeing people as a service user or professional and recognise we are all community members who value support when needed’
- ‘I want to have a dream, not the nightmares of being labeled and being discriminated against. For everyone to be respectful to their neighbour’
- ‘Expert by experience as an acknowledged official job with an honest remunerator.’
This final dream here also links to the dream of having service user and carer involvement adequately funded and the service users involved fairly paid for their work. This covered both the wider support and funding of the service user and carers groups, but also individual service users and carers:
- ‘Full and proper recompense and remuneration for service users, carers and other experts by experience in design and delivery of social work services and education’
- ‘My dream is for more funding made available for social work and carers in Scotland.’
Finally, many people had a dream about how this should be grown and built upon:
- ‘I have a dream that service users will be involved at all stages of a social worker's career. From application, to selection, throughout education and continuously through our careers’
- ‘My dream is for a better Scotland and better funding’
- ‘Wider and more varied participation of hard to reach groups in social work and education’
- ‘Service users and carers are truly equal partners in care/support, not just in universities for social work programmes but also in local authorities/HSCPs/housing/education/other agencies’
- ‘I have a dream where society as a whole becomes more accepting and understanding of people from different backgrounds, being either from a different culture, religion, socioeconomic status, being able-bodied or not so able-bodied.’
But we didn’t want people to just dream, we also wanted them to identify actions they could take and they thought others could take to achieve those dreams. Some of these actions were for academics and practitioners, to commit to identifying and acting on how they can involve service users and carers more in their work:
- ‘To involve service users and carers at all stages of social work education and to build a programme together’
- ‘Introduce and implement more workshops and projects similar to the ones we heard about today’
- ‘Service managers – ask yourself every week whether the service you offer is designed around organisational needs or service user needs – how do you know?’
- Social workers should take on the personal initiative to seek feedback from the people we interact with and continuously strive to be the kind of social worker that service users are telling us we should be!’
Some actions were a call to policy makers and decision makers to support these ways of working and the messages heard through the day:
- ‘Let my Policy Team back at Scottish Government be aware of the developments within partnership working with service users and carers in social work education and beyond’
- ‘Stop cutting funding and budgets’
- ‘Campaign for more funding for the universities to the Scottish Government.’
And finally, many of these actions were a call for change in wider society to support the type of worlds that people wanted to live in:
- ‘Better media coverage’
- ‘Live together and not separated in different areas’
- ‘REVOLUTION (PEACEFUL)’
- ‘Focus on human rights. Not services’
‘Working with, rather than doing to service users and carers’ will be key to delivering the kind of integrated health and social care and self-directed support that we all want.
Celebration and close – the Grassmarket Community Choir
To finish, there was a celebratory performance from the Grassmarket Community Choir, adeptly led by Morgan Gilday and made up of staff and members of the Grassmarket community. Audience members couldn’t resist joining in too!