reflection essay on service user feedback

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My Journey from being a Social Worker, to a service user, to an expert by experience

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Rebecca Regler, My Journey from being a Social Worker, to a service user, to an expert by experience, The British Journal of Social Work , Volume 53, Issue 3, April 2023, Pages 1719–1725, https://doi.org/10.1093/bjsw/bcad036

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This reflective piece is an autoethnographic account of transitioning from being a social worker to being an expert by experience on a social work course. I undertook an undergraduate degree in social work eight years ago and was an enthusiastic newly qualified social worker. Sadly, shortly after graduating I became very unwell, and I became disabled. I was no longer well enough to work as a social worker. I was devastated and it had a significant impact on my mental health as I went through a process which felt akin to grieving for my old life. I will reflect upon theories and models, which have helped me to understand this process and transition including theories of loss and a model of recovery. Involving people with lived experience of social work services (otherwise known as experts by experience) has been a mandatory requirement in social work education since 2003. I contacted my previous university and enquired how I could become an expert by experience. This was a pivotal moment both in acceptance of my disability and in connection with my ‘previous’ life. What struck me about becoming a service user was that it wasn’t the theories or the interventions that I came away from an appointment remembering, it was the felt experience, did I feel heard? Did I feel cared for? Did I feel empathy? Those elements were the most important, the foundation of the relationship is what made the intervention successful. So, now I promote a relationship-based approach being at the core of good social work practice. Becoming a service user deepened my understanding of what social work really should be.

I undertook an undergraduate degree in social work eight years ago and was an enthusiastic newly qualified social worker. Sadly, shortly after graduating I became very unwell with an infection that triggered what was eventually diagnosed as Ehlers-Danlos Syndrome, which is a connective tissue disorder, and I became disabled. I was no longer well enough to work as a social worker. As it is a connective tissue disorder, the condition affects every part of my body, I experience chronic pain, severe fatigue, chronic nausea, frequent joint dislocations and a whole host of other symptoms. It has impacted my mobility and I became a wheelchair user, which gave me a whole new insight as to how inaccessible society can be. I was devastated and it had a significant impact on my mental health as I went through a process, which felt akin to grieving for my old life.

I found a model of grief and loss which I had learnt at university to be a useful theory for what I was going through ( Kubler-Ross, 1969 ). It wasn’t a linear process and I moved back and forward between stages as I processed my emotions, I experienced denial, believing that I would be back at work in no time and anger as I was no longer able to function in the way I could before, and frustration that I wasn’t well enough to return to work. This progressed into depression as sadness took over that the career I had worked so hard for seemed unreachable. I also experienced a sense of bargaining in trying to find a way forward and work out what meaning this had for me. Reaching acceptance has been an ongoing journey for me, I am closer to this than I have been but still experience the other stages of loss particularly when I am reminded of what I have lost or when I experience a new disabling symptom.

When I was training at university, I didn’t envisage that instead of working as a social worker I would end up needing one myself. However, I knew that anyone could become a service user at any time in their life and that there is no binary divide of ‘them and us’. It is important that any stigma of being a service user is challenged and that it is a false dichotomy to suggest professionals and service users are separate identities when you can indeed be both at once. Fox (2016) speaks of having a hybrid identity of being a service user and a social work academic and bringing a blend of scientific and experiential knowledge to the role.

From adjusting psychologically to becoming disabled, accepting my prognosis, to managing the changes of multiple hospital admissions and applying for disability benefit, I have needed support over the last few years. I felt that because of my professional knowledge and experience, I should have been able to manage in applying for disability benefit myself. I had helped many service users with this process and knew the system well. However, it was a different experience to go through this process personally. I was sent a fifty-page form to complete about my disability and despite being familiar with the form, I found it emotionally confronting to document all the things that had changed in my life and to share this during the assessment. The support and advocacy from the social worker during this process and the assessment was immensely helpful.

One day when reflecting on my social work education, I remembered how we had service users who came to speak to us about their experiences and were involved across the course. This was an important and meaningful part of my education and hearing their stories really helped me to consider what makes a good social worker. I had a revelation and wondered if I could take on this role and reconnect with the social work profession. I contacted my previous university and enquired and shortly after was invited to join the service user and carer group. This was a pivotal moment in my journey and recovery. I found it therapeutic to share parts of my story and to use my experience of both being a social work student and being a service user to contribute to the course.

I now refer to myself as an expert by experience rather than a service user as I feel I am using my expertise from my lived experience. The role was flexible, and the staff were supportive, meaning that it was accessible to me. If I wasn’t well enough to contribute that was accepted and if I needed support this was accommodated. As a part-time role of a few hours a month, it was possible to balance this with my hospital treatment and need to rest. It has been mandatory to involve service users and carers in social work education since 2003 ( Beresford, 2004 ). There have been important changes to ensure that this role is meaningful and not tokenistic by ensuring that it is integrated throughout the course such as involvement in assessment, teaching, curriculum reviews, committees and admissions ( Goossen and Austin, 2017 ).

Social Work England is the current regulatory body for social work in England. Their guidance states ‘to ensure that the views of employers, practitioners and people with lived experience of social work are incorporated into the design, ongoing development and review of the curriculum’ ( Social Work England, 2021 , p. 11). It also states, ‘social work courses must be governed, resourced and managed using effective and transparent processes in collaboration with employers and people with lived experience of social work’ ( Social Work England, 2021 , p. 7). There is a need to increase the funding for this, which is currently set at £7,500 per annum per course, if involvement is to remain meaningful and move towards coproduction ( Hatton, 2017 ). Some course providers have had to supplement this funding themselves to ensure that service users and carers are adequately funded ( Anghel and Ramon, 2009 ). I have since joined the service user and carer group for a second course provider and have really enjoyed the further opportunities to be involved in social work education.

The ladder of participation created by Arnstein (1969) moves incrementally from non-participation to tokenism building up to citizen control. Slay and Stephens (2013) updated this seminal work to include new understandings of co-production in their own ladder moving incrementally from coercing to engaging to co-designing and co-producing. Increasing levels of participation can be experienced by people as being more meaningful ( Arnstein, 1969 ; Morrison and Dearden, 2013 ). Involving service users in social work education has the potential to help rebalance power imbalances between professionals and service users as frequently seen in practice ( Fox, 2017 ).

Social Work England promote co-production as the most effective way to work with experts by experience in social work education and recommend using a framework developed by the Social Care Institute for Excellence ( SCIE, 2015 ). The key principles defined by this framework are reciprocity, equality, accessibility and diversity. Reciprocity ensures that people receive something back for putting something in which in the case of an expert by experience could be payment for their work. Equality is the idea that everyone has assets. Accessibility is about ensuring that participation is accessible for everyone to take part in a way that suits them. Diversity is linked to social inclusion and is about promoting access to participation particularly from underrepresented groups in society ( SCIE, 2015 ). My experience of being an expert by experience is that the movement towards co-production has made the role more meaningful and truly participative.

My experience of becoming disabled has understandably had a significant impact upon my mental health, particularly in accepting how different my life has become. I have found that being an expert by experience within social work education has benefited my own recovery from mental health problems. Tait and Lester (2005) suggest that expert by experience involvement may be therapeutic in itself. A systematic review of components of recovery from mental health problems found that there are five key components for recovery ( Leamy et al ., 2011 ). They are connectedness, hope, identity, meaning in life and empowerment, giving the acronym CHIME. I have found this a useful framework when exploring how being an expert by experience has benefited my recovery.

Joining a team within social work education has helped me to feel a sense of connectedness. Working alongside other experts by experience and other professionals has made me feel part of a group. Having a new role and a sense of accomplishment has given me a sense of hope, that there is something more in my life than just illness. It has also helped me develop a new identity, moving away from being ‘just an unwell person’ to an expert by experience with a purpose. Furthermore, having shared goals with this team has created a sense of community ( Idrees et al ., 2021 ).

The role has helped me have a purpose again which has created meaning in my life which has been integral to re-building my self-esteem ( Shepherd et al ., 2008 ; Thorneycroft and Dobel-Ober, 2015 ). Finally, becoming an expert by experience has given me a sense of empowerment and helped me move away from a position of feeling disempowered by stigma and self-doubt. Being empowered led me to apply for other expert by experience roles and gave me the confidence to return to academic study which has been life-changing for me. Although recovery for me remains an ongoing journey, my newfound confidence and progress has enabled me to have a greater role within my own care ( Deegan, 1993 ; Glover, 2007 ; Watkins, 2007 ; Leamy et al ., 2011 ).

During my social work training I was taught a range of theories and models, which were evidence based in the social sciences of sociology and psychology. These models and theories were important in placement to gain an understanding of what the service user was experiencing and to use an intervention which was effective. This evidence-based practice is arguably part of the foundation of social work. We were also taught about relationship-based practice, which draws from psychodynamic theory and is about working in collaboration and partnership with service users in an anti-oppressive manner ( Ruch et al ., 2010 ). The quality of the relationship between the social worker and the service user arguably impacts upon the effectiveness of the intervention. However, the reality of current practice means that the ‘focus on targets and timescales is inimical to relationship building with service users’ ( Featherstone et al ., 2014 , p. 114). There is a need to reduce the levels of procedural and management bureaucracy so that social workers can be freed up to spend more time with service users thus promoting relationship-based practice ( Ruch et al ., 2010 ).

My experience of social work from an expert by experience perspective is that theories and models are important, but they are not what I am focusing upon when I leave an interaction with a social worker. My felt experience of the interaction was far more important to me. Did I feel heard? Did I feel the social worker was empathic? Did I feel cared for? To me, these are the most important parts of social work practice. The quality of the model of intervention may be excellent but if the social worker hasn’t taken the time to get to know me and to listen to me, it can become lost in translation. Social work is about people and people are individuals, have unique experiences and needs and what works for one may not work for another. The best way to get to know what will help an individual is to build a relationship with them. Rogers, the originator of person-centred practice states, ‘If I can provide a certain type of relationship, the other person will discover within themselves the capacity to use that relationship for growth and change and personal development will occur’ ( Rogers, 1977 , p. 33). This highlights the need for human connection and good quality relationships within social work practice.

Ultimately, needing a social worker myself has deepened my understanding of what good social work is. It is about two experts coming together with joint experience of lived and learnt expertise. Both have the need for human connection for the intervention to be meaningful and purposeful. Social workers are often required at times of great emotional turmoil and therefore compassion, empathy and understanding are needed. The social worker needs their foundation in evidence-based practice alongside human-based skills to make a difference. I hope that my learnt experience of social work alongside my lived experience of social work will make a difference to the social work students I work with. I will continue to use both experiences to promote relationship-based practice as the heart of social work.

Author Biography

Rebecca Regler is a 35-year-old female from South East England. She is a white British, disabled and a wheelchair user.

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Social work student and service user role play sessions

This is one of seven stories, showcasing what service user and carer (SUAC) involvement in social work education looks like, what makes it work and what benefits it brings. It has a significant role to play in shaping the next generation of practitioners.

SUAC involvement in social work education has been mandatory for 15 years now, so there is a lot of learning to share with others who can learn from this - transferrable to  educators and practitioners working across public services, and relevant to policy-makers committed to mainstreaming person-centred – or person-led – approaches based on real partnership working between those who use and those who deliver services.

This story is based around role play sessions that are held between social work students at the University of Strathclyde and members of the service user and carer group. The role play is part of an exercise called Fitness to Practise , so students have to take part in a role play before they go out on placement (this is done with second year undergraduate students on the BA course as well as first year students on the Masters course). Previously these sessions were carried out solely between students, but that didn't seem to be working, with it being much harder for students to imagine each other as service users and to use that experience to inform their future work.

Over the last 10 years this has evolved from these student-to-student sessions, to interactions where care and support experienced people, who have had contact with social workers, come in and role play themselves with the students. Instead of a solely imaginary scenario for the student, the role play interview is loosely based around their own previous experiences. The student is given preparation in the form of a short written brief that is prepared by the service user. This is to imitate the type of preparation they would do in a real situation, with case notes before meeting a person for the first time.

On the day of the role play, the student enters a room to meet the service user/carer as if they are entering a real life situation. There are generally two chairs in the room and the student is given ten minutes to speak with the service user, with a couple of minutes directly afterwards for the service user to give them feedback. The role play is video recorded and the student reflects back on this video and the service user feedback to write an essay on their learning and experience. So, the role play itself is not assessed as part of the course, but the essay is. The reflection and learning is the most important part. The service users generally perform between three and five of these individual sessions with students on one given day.

Key learning from the course coordinators and service users

We brought together two of the course coordinators and four of the service user and carer representatives to have a hour long discussion around the role play sessions. Below are some key themes and quotes from that discussion.

Role play to real play – learn it and feel it

But it's that realness and authenticity that you bring that they {students} connect with you on such a human level, that's what sticks out for people, and it's not just about learning something from you, but it's feeling something from you.

There was a thread through the discussion that highlighted the strength of having the service users connect with the students, using experience from their real life connections with social workers. The service user scenario briefings that the students read beforehand, the people they met, and the situations they were exploring were steeped in reality. Often that reality is not an easy one for those role playing with the students as they have to revisit times that were difficult:

I've got my scenario in here and I've got an old one and I've got a newer one and I think… they were both a very difficult time in my life...it can bring out emotions from the past but being able to pass on to them {the students} something which is truly real, a time in my life and my son's life and let them be able to make something of that as a piece of work that they can reflect on. You just can't beat that

An example of the commitment to the principle of realism is shown by one of the service users below. The connection with the students on this role play is not just what is said and written, but the visual and embodied cues of that human interaction:

To let you understand, I prepare a couple of days beforehand. I don't shave and I don't wash my hair and I put my buttons out of sequence in my t-shirt and I ruffle my hair so I look as if I'm a bit down

This exemplifies the dedication that service users and carers bring to this work. However, they were also keen to explain the importance of the connection between themselves and the students as being mutually beneficial.

2. Mutually beneficial

At the core of this was the satisfaction that the service users and carers received from knowing that their input was helping shape the thoughts and careers for the future generation of social workers:

You want them to be better, not to make the mistakes that were made with us.

That often was the root motivation, but they also went further to explain what they gained from involvement with the students:

I'm not just a carer or whatever you know, you've got something to offer and it's being used and it does give you more confidence.

You know I'm not just here because they've got to do this and its part of the course, you do feel appreciated.

There were links made between contribution to education and feeling appreciated, and the subsequent confidence and satisfaction this gave them as an individual. There was also a feeling of belonging within the group, of being in it together and supporting each other. This connected to the role play sessions but also to the wider activity of the service user and carer group within the social work degree delivery.

3. Get the support right

Behind the role play sessions themselves lies the preparation and administration of making sure the service users, carers and students are all emotionally supported and prepared to take part. One of the coordinators explained how this has evolved:

I think in the beginning, in the early days it was all quite complicated and trying to sort out the logistics of it all so I think the focus was on just trying to actually get it right in terms of how many students, how many people were coming in to do the role plays, at what times and I think the bit about actually having a chat and having a coffee and just relaxing and getting some support maybe wasn't as prominent in the early days

This comes with a recognition that the role plays do not happen in isolation. Service users need to be included in discussions with the course coordinators to shape the sessions. They need to be emotionally supported as they are being asked (and volunteer) to share very personal stories and experiences. There needs to be feedback for the service users as well as the students. They need to feel appreciated, even by small acts, like a supply of coffee and tea. Some of the service users mentioned that they would like more time, both on the role play days, and afterwards, to debrief with each other and the course coordinators, to reflect on how the sessions have went, learn from each others experiences, and also make sure everyone was happy with how things went. One person spoke of 'mentoring' some new members of the group by outlining how they 'spoke to them about our approach and how we had dealt with it and obviously we'd been doing it for a few years… almost mentoring in a way just by having discussions about how we approached it'. These supports and relationships are needed as ' part of relieving the stress' as the service users can also feel nervous before the sessions, or anxious afterwards.

Beyond that, at a very basic level, the service users and carers need to physically get to the sessions:

...without good admin staff as well running the back show as it were and doing all the details. Things like organising taxis...

...even about the housekeeping, about how we get here, how we're supported to get here, how we're supported while we're here, before and after… you know it's made simple, almost, there's hiccups sometimes in how it's all managed, like anything but I think knowing you're supported to come here and play your role makes it easier.

As with all of our stories about service user and carer involvement, relationships are key, between service users and carers, the academics and the students. What is also key is the resource to support these interactions. Service users should be equal voices and influencers around any table, and that means their time and experience are valued in monetary recompense, as well as thanks.

4. Ripples into the future - students remember

There were a number of examples shared where students remembered the service users and carers that they had their sessions with. As is reinforced by the student audio in the next section, this contact is often self-reported by the students as being one of the highlights of their course. Some of the service users spoke of bumping into students who remembered them from contact ten years ago. There were also numerous examples of students approaching them to thank them:

She came and said 'you did my role play with me, at Strathclyde.' She says 'and I really thank you for that.' And another time we were sitting waiting, we were in one of the universities, I can't remember which one or where and we were sitting waiting for someone to come and meet us and a girl came up to us and said 'You probably don't remember me but you did our role play.' And it's happened quite a few times and it does, it makes you think, well if they can remember you, you must have had some impression on them.

Having these types of interactions really strengthened some of those motivations described earlier, and gave a continuing impetus and justification for keeping this involvement going:

Knowing that I've made a difference to somebody's life... I'm a giver so I want to give anything that I've ever learned, pass it on to whoever needs it and that's exactly it. Always has been.

These sentiments and the comments from the students reflect how this approach has real potential to be used in other settings to help strengthen student or early career connections with service users, whether that be in social services, in health or in other care and person-focused settings.

Student reflections

We facilitated a group reflection session with 16 of the social work students, held straight after they came out of the role play scenarios with the service user and carers. Before we went into the discussion, they were asked to note down some of their thoughts on post-its and put them up on the wall for others to see.

Key responses

What did you take away from it.

• I am capable of doing this!
• I was very nervous before it started
• The importance of listening and reading someone's eye contact and body language
• The service user gave me good feedback - reassurance
• I am now going to be much more confident and hopefully worry less

How did your understanding/perspective change?

• Reminded me social work is not just about services but about respecting and empathising with others
• I can now appreciate how difficult it is for people to speak about experiences
• Gave me experience of working with a different service group
• The filming was not as intrusive as I thought it would be

How did the session make you feel?

• Glad to have the opportunity
• Nervous… then assured
• Anxiety-producing
• Went smoother than I expected
• Challenging… tense
• Feel more confident
• I would have liked to have spent more time with service users as a group

How do you think this will help your future study/practice?

• Will be better informed when talking to service users for real
• More confidence in future assessments
• Helps to refocus thinking on communication skills - will help towards relationship building
• Good reminder it is a personal story and understanding
• More assured that service users are approachable

The audio of the discussion that followed this can be listened to below. The students discuss: their expectations in the run-up to the role play interviews; their different experiences of the session; the value they give to this contact and feedback; and what else they would like to see and experience around the involvement of service users and carers in their course. This combines to give a wonderful insight into the real value that this has brought to their education and how they see the contact informing their future careers. What is particularly impressive is the critical reflection they bring to the discussion, sharing their own perspectives but also exploring how they think this contact and connection with service user and carers could be expanded on and strengthened.

This also resonated with some of the course coordinator and service user discussion where, given more resource (time, money, people) they would like to have this service user/student contact and approach expanded, and do this in conversation with the students themselves. This expansion would include being able to carry out these types of sessions in more real physical settings (in homes or the community) and also with a more diverse range of service users represented. At the moment, the group has few young people with service experience and isn't very culturally or racially diverse. The students, service users and carers and course coordinators would all like to build on that in the future.

Student discussion

Int.    Great so who would like to get us started, I think that was a really good question beforehand on what your expectations were of what it was going to look like or what it was going to be like doing this roleplay, so does somebody want to get us started on some of those expectations of what it was going to be like?

F    I don’t know, I think expectations are that we’re going to feel very under the microscope, that we’re going to be judged or analysed in some way which we will do ourselves later on but I think once you get into it, you realise the focus is not you it’s the service user. And I think that clicks in quite quickly which I maybe wasn’t expecting to happen you know, I thought I might feel quite anxious all the way through but once my focus shifted that made a huge difference.

F    I think as well, I thought I was going to be really nervous but once you get in there, it goes so the anticipation kind of went pretty quickly and then you can just relax into it so I think it’s been built up in your head but then once you go in there. Although it was going to be really artificial, it didn’t feel as artificial because the service user kind of brought on their real-life experience from what happened to them at that time so they weren’t being artificial, they were being real so it did kind of have a sense of realness about it I think.

F    I think as well with the service user that I had interviewed, he also made you feel comfortable because obviously he was speaking so openly about his own life but I think before you even go into the interview you’re just nervous, you’re apprehensive, you don’t know what he’s going to do or what he’s going to say like if he’s going to trip you up or anything like that but they’re not there to do that, they’re there to actually make sure that you’re a decent enough person to actually go into practice but I think when we had done … like we done a 2 week kind of practice session on ways to speak to people and the importance of communication skills and stuff like that but they role plays, I didn’t think were anything like the real thing, it’s very different I would say.

F    I feel the same way actually, it actually feels that the role-play we did was more intense and more … and (… unclear) than the real thing actually and the service users were very, very relaxing so that makes me to feel very relaxed as well so I was able to communicate well with him and that’s from that aspect even now I don’t believe myself so that was good.

F    Yeah, I was really looking forward to getting some contact with a service user because we spent so much time in the classroom and you learn about you know, all the policy and the legislation but really when you’re sat face to face with someone that’s when it counts and you can’t teach that sat in a classroom so I was really looking forward to being able to actually put everything we’ve learnt so far and try and use it and the service user we had did try and trip us up on the confidentiality thing and kind of at the last minute it kicked and he said “Well why do you have to pass some details on?” and it was like “Well, you know that’s the law it’s legal if you know you’re at risk or whatever.” So, it was good to get that, so I was really looking forward to speaking to (… unclear)

F    Even just somebody asking you “So where does that come from?” and you’re thinking “Where does that come from? Data protection, it’s the law!”

Int.    Fall back position, great it’s the law … have to do it!

F    Yeah, I also thought that it would be a lot more nerve wracking cos of the camera cos you can be a lot more natural when you know it’s just you and during the practice sessions it was … you could feel the camera and this time I absolutely forgot about the camera within 3 seconds which was amazing. I did not … I knew at some point I would but it was so quick. They were just not intrusive at all.

M    I jotted down a few ideas to try and guide me just in case it all went to pot but the actual exchange itself didn’t bare any resemblance to kind of the way that I’d anticipated which I suppose is a good thing because it means it’s an authentic dialogue.

Int.    So, was that like prompt questions or bits of things to fall back on?

M    Yeah, yeah, I just kind of how I might have imagined the thing going in my own head, just if I ever had brain freeze then it was something that I could look down at but it wasn’t hugely necessary.

F    It went a lot quicker, cos when we did the roleplay in the class the 10 minutes felt like a lifetime but in the actual real scenario it went so fast I felt like I didn’t have enough time to discuss everything so I think because it was a real situation whereas in the class the students are trying to think what somebody would say and it’s not a real situation for them so they can’t really talk as in depth as the service users were able to.

F    Uh huh really, cos I actually eventually used 15 minutes because no one came to knock, they forgot about us. I was so thinking (… unclear) 10 minutes but then it was 15 minutes so I decided I’d leave here now.

F    I think I would have liked longer with the service users, I could have stayed and chatted for a lot longer. I really would have liked to, even as a group you know have met up with the service users and be able to have a cup of tea or a cup of coffee and really go through their experiences especially with social work department. I’d like to know what they really think and what’s really behind their stories so I felt that was a bit of a missed opportunity.

F    I definitely felt like because of that time restraint instead of maybe following on what she had, I was like “Well I need to cover this and this.” So, I think it didn’t seem as natural because you didn’t have that space to maybe kind of explore a little bit more about what the service user was saying. I know that’s maybe not true for everybody but I felt that way.

F    It might have been better if they had said to use “Well you have half an hour, you don’t need to use that entire time but if you think that you know, and leave it a wee bit open rather than like a very set deadline because in real life you’re not going to go in with a stop watch and say “Right go, 10 minutes.”

F    Technically (… unclear)

F    Yeah and then you know, you’ve got to the end it was very rushed and I didn’t have a chance to even say to the service user “Thank you for speaking with me.” It was just really “Okay send you a letter with my next appointment, bye.” And that’s like a really bad way to end our interview.

F    I think because there was like sort of curve balls thrown into our interviews, there was … it took up a lot of time at the beginning as well so it felt like you were probably about 5 minutes into it before you actually got a chance to ask a question. I mean like between going over the whole confidentiality thing and being questioned on that and then changing seats and things like that. I mean like by the time I actually was sitting down and ready to ask a question, it felt like about a minute before the door knocked to say that it was time to stop but then that’s probably the reality often because you’re going into situations and you don’t know what’s happened to that person the night before. You don’t know how they feel about you coming in and you can’t put a time on it, I just feel like anything could happen whenever you go out to speak to someone and you might use the whole interview dealing with that situation rather than actually going in to talk to them about what you went for.

F    I think as well it emphasised the importance of being able to be adaptable and actually change really quickly in a situation so like when Maria said when we were in the room with the service user that we had been allocated, he was hard of hearing so he was saying “I need to go somewhere else, I need to swap.” So, having to actually swap seats when you’ve just went in, you’ve introduced yourself, you’re about to have all your spiel in your head … “I can’t hear what you’re saying, I need to swap seats with you.” And I’m like “No bother, lets swap seats … where was I?” and you’re trying to think in your head, “Have I even covered confidentiality, did I say that or have I missed that out?” but in real life there are people who are going to have different communication needs and I think you do need to be aware of that.

F    I think that they had a more challenging service user, I think that we had actually a very easy one and you also have the issue when it’s very easy and you can tell she’s so experienced and she’s guiding things and you know that this is way too easy, this won’t happen because she’s just giving you all information “And I want this, and this is what the support I have and blah.” It’s too, too ordered, too simple and you know it’s lovely to talk and you’d love to chat with her but you know that in real life it’s not going to be that good, that easy.

F    I think that’s one of the things that came up in the role play, when we done the role play and some of us were service users, asking things like “So, what does that word actually mean?” like I’ve done interviews before with children and young people and they’ve said to me “I don’t know what that word means, can you explain that to me?” because you’re just so used to having this jargon that when you go and you interview somebody or interview somebody who has got any sort of difficulties in communication and you’re using convoluted terms that they just don’t get, I think it’s really important to make it plain English. I think there’s nothing worse than being in a hospital and they’re talking about you and it’s all these medical terms that you’ve never heard of and you don’t know what’s wrong with you.

F    Yeah, I think that’s something I maybe did a bit wrong like I said phrases like “Coping mechanism” like people don’t know what that means like you know it’s quite important to remember who you’re speaking to.

M    I think the biggest thing for me was that within the sort of brief synopsis you get of the service user, and it said that he was quite reluctant and we went through that in the class and said he’d had quite a negative experience previously with social work so I was quite nervous about broaching the subject and I thought I was going to get quite a negative response for him but he was actually really understanding and I actually empathised with him because the things he was saying were actually quite straight forward. He just wants a response, somebody to actually show the curtesy of actually phoning him or sending him a letter or something you know and I thought, yeah that’s absolutely fine.

F    I think (… unclear) raise their hopes actually and that was what happened to him because we had the same person and he said you know the social worker he had before raised the hope sort of level and then they couldn’t get anything no outcome of whatever they’d discussed so I was like “Okay so, I can promise you I would get back to you this time around, don’t worry.” So, I think it’s always good to not to promise, maybe get back to the office first and see what you can come up with before you come back to them and tell them what we can realistically do and put it in place for them.

F    Aye, people have more respect for you if you’re actually realistic and you’re saying to them “Do you know what, I don’t know the answer to that but somebody will and I’ll go and check and I’ll get back to you and when I get back to you we can take things forward but at the moment I don’t know.” Whereas I think in some circumstances when you feel under pressure there’s almost this urge to say “Yeah, that’s no bother I’ll do that within a day.” It’s not realistic, anything could happen and actually giving people like you said, (… unclear) … giving people things that are realistic is helpful for you as well cos if there’s things that come up and you’ve maybe got a report to write or somebody goes into emergency care, then obviously you need to deal with that as well.

F    I think just having an open mind as well cos when we read our little scenario before it said that the gentleman had depression and it was all very negative so I was thinking that that’s what the interview was going to be like but it was actually very positive and that was in his past but now he’s in a much more positive place so I think just like go in with an open mind and not think it’s going to be quite a negative interview just cos that’s what it says on the referral.

F    I think, just to add to that, it makes it a bit more real for me cos I went in thinking he had a physical disability (… unclear) and now the mental health thing, but I realised that the person is stronger than, I mean mentally, the person has gotten over some of these challenges or impediments that we thought he had so it gives you a new ground to explore further, yeah.

F    Yeah, I think that’s why like these interviews are so good and meeting like a real service user cos you’re not going in to like show off all the knowledge about what you can do but you’re kind of getting to know them and realising how well they’re coping and their strengths and things like that. I think I was really reminded of that in the interview because she was kind of talking about how she was coping so well …

F    I think it’s the difference between a personal story and a case study …

F    … that you see on paper is a case study, when you’re sitting in with someone it’s a personal story and it completely changes.

F    I think getting feedback as well from the service user was really helpful, so at the end of it we were encouraged to ask “Do you have any feedback for us, could we have done anything differently?” and the service user that I had had, had given me like 3 points so these are things you could have done a wee bit differently but these are all the things that you done well so being able to actually note them down is going to help me to reflect on it before I actually go into practice and if I go into somebody’s house and I’m working with an older adult I can be like “Oh would you like to be called a certain name or do you prefer something else?” just really small tips but it can make the world of a difference.

F    And our service user had said the he purposefully didn’t shave for 3 days, so that he looked a bit unkempt so it looked as if he wasn’t coping, any of us didn’t pick on it and I had said to him at the end, I said “Well have you seen lads these days? They don’t shave, they all have beards and it’s the hipster style so someone of my generation … if a guy didn’t shave I wouldn’t even notice.” But then thinking “Well actually if you’re from an older generation, you know men shaved and wore a shirt and tie and you know had their hair cut.

F    Even his hair, he was saying, “Did you notice my hair?” and I was thinking, “I just thought you were windswept.” Like it’s a pretty windy day outside, “I’m really sorry, no I never.” And he had said that he’d deliberately mixed up his buttons, but he had a black polo shirt with a fleece on top of it so you would have had to have been sitting pretty close and like examining to be able to see. I’m like “Oh I never noticed that either, I’m really sorry.”

F    It was really useful though just to be mindful if you’re working with a particular service user group, if it’s somebody of a different generation maybe to think about actually what’s important you know, to people who … it would go the same way if it was young people, you know, how do young people dress and should I be you know, noticing things like that?

F    Worried if they’ve got a suit and tie and they’re appearing in court.

F    I think from what you’re saying what I’m taking from that is, we should be prepared to identify or, yeah, with different generations and other cultures as well because that’s what I’m getting from that okay because you identify or you have knowledge about the particular group of people … be it generation or culture you would be able to identify things more easily or be able to pick up things that are not said, better than those that are … yeah.

F    I think what you say about people from different cultures would be really useful, we haven’t focused at all on how would you speak to someone who maybe struggles with English, who needs an interpreter or someone who’s from a different culture, you know, how would you respond to … for example in some cultures, some men it’s inappropriate to you know, have eye contact with a woman and to be shaking hands with a woman and we haven’t really had the chance to actually discuss and practice you know how … so it might have been useful to actually get to speak to a service user who is from a different culture.

F    I think as well that could have been a wee bit more focused on ethics around interviewing especially in relation to if you’re working with a particularly vulnerable group, which we will be on placement. In the past I’ve interviewed children and young people who had a parent in prison and obviously if you’re approaching a sensitive topic then you want to know “Well, can I ask they questions, am I cause them more harm than anything else?” but I don’t think we really covered a lot of that, it was just “here’s about confidentiality” but not so much about “here are the ethically implications behind why you have to.” Cos when a service user’s in front of you asking you “So, why, why is confidentiality important?” you’re then thinking on the spot, you’re thinking “God, why is it important?” but I think if there was a wee bit more of a focus on that and on approaching different service user groups it would have been really helpful.

F    Yeah, I think it will be really valuable to have a chance to work with someone who doesn’t want to speak to you rather than someone who’s really willing to engage with you as well so obviously people from different backgrounds, different nationalities as well.

F    I think that would be good for the next interview.

F    I think with the first one, I think it’s good to just to have someone that is quite open so you can kind of practice like those kinds of skills first of just being empathetic and welcoming and kind of that kind of thing and maybe do that after.

F    I think maybe though it can give you a false sense of security because you’re maybe …

F    I need a false sense of security.

F    … you’re maybe thinking “Oh that’s quite good, that went really well. Wait till I go into a social work office and I go out and I meet someone and they’re going to be okay because that person’s been okay.” But in reality, people are not going to like you for being a social worker a lot of the time and are going to be resistant and I think like what you had just said, that would be helpful for somebody to be like “No, I don’t want to talk to you, so what do you actually mean, why are you here? What do you want in my house?” or “I don’t want social work intervention, I never asked you to come it was my daughter.” Just different ways to try and … cos we need to know how to approach that in practice.

F    Yeah, we haven’t really covered how do you behave in a situation like this, have we?

F    We’ll be like “Aw, alright pal ehm … just send somebody else.” But you can’t do that in practice.

Int.    Unbelievable we’ve been chatting for 20 minutes so it’s now 5 to one, so I’m going to round everybody and see if anybody wants to add anything. If there’s anything burning, that you’ve not managed to say so we can just go round clockwise and if anybody’s got something to say feel free to.

F    Just really that it was quite a reassuring, positive experience.

F    Yeah, I would agree.

F    Yeah, I agree.

F    Yeah, and just sort of repeating before I think it would have nice if we’d spent more time with the service users. I think because they were particularly open which has been great for us but because they’re open it would have been a real opportunity to get some insight. I think that’s the only thing I want to reinforce.

F    I didn’t feel like it was quite artificial, it actually felt quite real for it was a surprise. I didn’t think it would be that real.

F    Just think it sort of (… unclear) practice and I think like every time you have an interview with a service user, you learn something else about yourself and how you’re carrying out the interviews, it’s just practice.

M    Just to put on record, that how much we appreciate the fact that people have given up their time to come and help us with that because it’s a really valuable …

F    It is.

M    … and they really don’t need to do that.

F    And it must have been quite difficult for them as well to go through their experience with so many …

F    Again and again.

F    … again and again, yeah.

F    I think it’s one of those things that, like say if you hear role-play or you hear like interviews you kind of like “Oh my god, this is going to be terrible.” And you’re thinking of everything negative but actually it’s probably the most positive thing that you do, even in uni we’ve done role-plays in class and it’s how a lot of people remember it because you’re practicing it. So, I do think that it is a really valuable tool.

F    I think that because the service users have so much experience, they’ve done it a few times already they gave you information before you even ask the question. That was my impression you know, I didn’t really have to ask the question the lady was already talking. It felt like she led the interview more than me at some point, yeah.

F    I did think it was a great opportunity, especially to get the feedback from the service user because you’ll not often going to get feedback on your own practice. You’re on a one to one with people, you’re not going to be able to look back on that and go “Well, I was rubbish there or I should have asked that question.” So that’s a good opportunity to get the feedback for going into practice.

F    Yeah well, I agree, (… unclear)

F    I think just what Anna’s said there, you said there just made me think about them being leading it. So, it’s all that person-centred practice now isn’t it? So, it kind of just reminded me that that is what we should be doing, sitting back and kind of letting them so that was good to think … to actually see it rather than just read about it.

F    Yeah, I think I’ve learned a lot from doing this, much more so than if it was just a written assessment or maybe an exam even would, it’s been for me it’s felt a lot less pressure and a lot more beneficial than like a written exam …

F    … I think.

F    Definitely.

F    I think it should be the essential part of the course …

F    … really, yeah.

F    Uh huh.

F    I think we would even benefit from more workshops for sort of like more vulnerable, resistant service users, you know if we have a few and that’s incorporated because we’re going to go on in January and go into the real world and start dealing with the situations and maybe we will have the best way to do it and if we do it now, maybe we’ll develop you know from the get go, we’ll have a bit better approach so that’s something that would be very beneficial.

Int.    Any other very, very super final thoughts?

Int.    Great, I’ll stop recording. Thank you all.

Featured in the collection: User involvement in social work education

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Student role-play interviews with service users in preparation for social work practice

Inter‐professional education within integrated services

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• Published: 26 March 2018

Service user reflections on the impact of involvement in research

• Jim Gordon 1 ,
• Sue Franklin 1 &
• Sabrina A. Eltringham 1 , 2  

Research Involvement and Engagement volume  4 , Article number:  11 ( 2018 ) Cite this article

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Plain English summary

Public involvement can impact on research, on the public who give advice, on the researchers and the research participants. Evaluating impact is an important part of the research process. Two members of a hospital-based patient research panel and our coordinator have written this paper. Our panel covers a range of rehabilitation and palliative services. These services form the “Therapeutics and Palliative Care Directorate”. We describe how we worked collaboratively with hospital staff and co-produced questionnaires to evaluate the impact of our involvement. We compared the different perspectives of the researchers and panel members on our contribution to the research. We present evidence from these different standpoints, including how our panel made a difference. We found we needed to adapt how we collected the views of the researchers and our members to ensure it was meaningful to our group whilst delivering the wider objective of the hospital. A key finding has been how our involvement has extended into other groups, which has identified opportunities for sharing resources and experience, including areas such as cost effectiveness. Our two-person membership of a high level Board of Academics and Senior Clinicians, which oversees the research we contribute to, has resulted in our opinions influencing the heart of the Directorate’s research strategy. We have learned the importance of a flexible approach as the Directorate changes, and the demands on us grow. This will continue to help us share our own development, successes and experience and extend the benefits from working this way.

Reports about the impact of patient and public involvement in research can be improved by involving patients and research staff more collaboratively to co-produce instruments to measure their involvement. This commentary, written by two members of a hospital-based patient panel and their coordinator for its work, describes how we co-produced instruments to evaluate the impact and effectiveness of our involvement. We present here the results, including our quantitative and qualitative findings, of this patient led evaluation and reflect on how our involvement has made a difference to the research projects and research infrastructure within the hospital in which we operate and on us as a panel.

Existing impact frameworks and guidelines were reviewed. Members co-produced and piloted qualitative questionnaires to identify values associated with patient and public involvement (PPI) from both a researcher and panel member perspective, and collected quantitative metrics to provide descriptive statistics on the type of involvement and activities. Members also produced a comments slip to provide contemporaneous feedback after each meeting.

The panel has reviewed 36 research projects for the Therapeutics and Palliative Care Directorate drawn from speech and language therapy, physiotherapy, occupational therapy, dietetics, podiatry, palliative care services and chaplaincy. Some of the main results of our involvement have been the development of grant applications and making written information more understandable for research participants. Examples of how the Panel made a difference included providing an effective forum for debate by providing practical suggestions to improve research design and identifying potential issues that may not have occurred to the researcher. The panel has had an impact outside of meetings both within the context in which it operates and on the individuals involved. Examples included: influencing the Directorate research agenda, sharing resources with other groups, developing research relationships, and enabling member participation in different roles and settings.

Embedding ourselves within the Directorate research infrastructure has enabled us to adapt to organisational change and actively contribute to the research strategy. There is greater scope for involvement in areas of cost effectiveness and economic evaluation. Increasing member contributions and networking with other groups provides added value as well as cross fertilisation of ideas as part of our widening impact.

Evaluating the impact of our involvement has improved our understanding of what aspects of involvement work best for the panel and the researchers who attend our meetings, and in the different settings that we work in. It has helped us to focus on how we need to develop to maximise our resources going forward.

Peer Review reports

Introduction

Patient and Public Involvement (PPI) can have a range of impacts. It can impact on research, on the members of the public who contributed, on the researchers and research participants, and on the wider community [ 1 ]. Increasing evidence about the impact of PPI from the perspective of service users is emerging [ 2 ]. However accounts of impact can be improved by providing more information about the context and mechanism of involvement [ 3 ] and involving service users collaboratively to develop instruments to measure impact [ 4 ]. This commentary describes how members of a patient research panel in a large National Health Service (NHS) Teaching Hospital worked collaboratively with the Trust Research Department and other patient research panels in the hospital to co-produce tools to evaluate the impact of patient involvement from the different perspectives of the researcher and the panel member. We present the results from the evaluation of our panel and discuss how our involvement to date has made a difference to the research projects and research infrastructure within the hospital in which we operate and on us as a panel.

The Therapeutics and Palliative Care Patient Research Panel launched in May 2014 as part of the Directorate’s investment in its research infrastructure and commitment to integrating service users into the research process. The Directorate provides a wide range of diagnostic, rehabilitation and palliative care services, and supports patients with a broad spectrum of acute, chronic and progressive health conditions and diseases. Members were selected based on their direct experience of these services or indirect experience as carers of patients who use these services. These services include speech and language therapy, physiotherapy, occupational therapy, dietetics, psychology, chaplaincy, tissue viability and palliative care services. Many of our members are active users of these services or care for someone who uses these services so their experiences are contemporaneous. The panel meets quarterly, but also offers the facility for members to contribute online for those who can not attend meetings to provide feedback and for researchers the opportunity to have access to the panel between meetings.

The main aim of the panel through face-to-face meetings and providing online feedback between meetings is to ensure that the research being carried out is high quality and patient focused. Members are involved throughout the research process from helping to prioritise research topics; offering feedback on research proposals including applications for ethical approval; providing ideas to improve patient recruitment; to disseminating the findings to the wider public. Another important part of our remit is to raise staff awareness of PPI, our panel, and the value of involving patients and the public in research. We are actively involved in educational and training activities and events. Additionally two members of our panel sit on a high level board of academics and senior clinicians, which oversees the research we contribute to, where they have the opportunity to influence the Directorate’s research strategy.

Evaluating impact is an important part of the research process [ 5 ]. Having contributed to the Directorate’s research for two and half years the panel wanted to know if they had made a difference and felt they had sufficient amount of data to form the basis of an evaluation. As well as being good practice to measure our intervention it was felt an evaluation might improve our involvement by learning from the feedback of researchers as well as our members. The decision to evaluate our activities also coincided with a Trust wide initiative to measure the impact of all its panel activities.

Our co-ordinator attended a meeting with the chairs and co-ordinators of the other hospital patient research panels and the Trust’s Research Department to discuss how the impact of the panels should be measured and evaluated. Existing impact frameworks and guidelines [ 1 , 6 ] were reviewed and we co produced with the other hospital panels and the Research Department separate qualitative questionnaires for panel members and researchers. The aim of the questionnaires was to identify the values associated with PPI from a patient and researcher perspective. It was felt important that as part of the impact framework we should also capture data for example on the frequency and level of our input on research projects. Information in the form of quantitative data was collected by our co-ordinator to provide descriptive statistics on panel membership, type of input into the research process, attendance at local and regional events, and staff educational activities.

Our members piloted the new panel member questionnaire and the researcher feedback questionnaire. We commented individually and collectively and our feedback was taken back to the joint chair and co-ordinator working party. Amendments to both questionnaires were collectively agreed.

Researchers who attend the Therapeutic and Palliative Care panel meetings are asked to complete their questionnaire after each meeting. The panel questionnaire is designed for annual feedback. In addition to the Trust questionnaire our panel also felt it important to introduce a comments slip to be completed at the end of each meeting. This was in response to some members finding it difficult to recall information over twelve months and wanted to be able to implement change more quickly. The comments slip asks panel members what aspects of the meeting did they find most and least rewarding, and how they feel they made a difference.

Quantitative metrics

The Panel has 14 members and has reviewed 36 research proposals between May 2014 and March 2017. A total of 33 researchers attended meetings or approached the panel remotely and a number requested feedback more than once. The main areas which the panel provides input is in the design of studies: recruitment of participants, developing grant applications, reviewing participant materials (for example, information sheets and consent forms), commenting on data collection tools (for example, questionnaires and interview topic guides) and outcome measures (Fig.  1 ).

Type of involvement (May 2014 to March 2017)

Other types of involvement include prioritising topics for future research and providing input at a strategic level, for example by reviewing and commenting on the Directorate research strategy. Changes to the research strategy included refocusing the strategy to more strongly reflect the primary aim of undertaking research for patient benefit, and including patient relevant outcome measures. The Directorate achieved Trust Academic Status in 2016. The review committee acknowledged clear evidence of the panel’s involvement. Other examples of involvement have included being a member of a project’s steering group, attending workshops, and disseminating their work at local, regional and national research and public engagement events. We have also presented at staff education and training events including a “Valuing patients in research” workshop, in which members of the panel presented the patient perspective. This educational event has since been adopted by the Trust Research Department and rolled out as part of their educational programme.

Qualitative data

Researchers were asked what their perceptions were of presenting to the panel before and after the meeting. Most researchers before attending were aware that seeking the opinions of members of the public was an integral and valuable part of the research process and were optimistic about potential insights that may not have occurred to them. One researcher felt “apprehensive about being asked questions I couldn’t answer!” After the meeting researchers stated they felt the comments were constructive and supportive: “It encouraged me to persevere with my application”.

Overall 83% of researchers stated they found the panels comments very useful and 77% made changes as a consequence of the feedback. Eighty four per cent stated they were very satisfied with their experience and 94% said they would definitely use the panel again. Examples of how researchers found the panel’s comments very useful included consideration of the burden to research participants in a study about developing speech recognition software for patients with paralysis on breathing support machines. The panel suggested shortening the length of the voice recordings as part of the software development given potential for participant fatigue, which was favourably received by the research ethics committee. Another example of added value was for a podiatry research study about peripheral arterial disease funded by the National Centre for Sport and Exercise Medicine. The panel suggested changes on how to make the recruitment poster more impactful and altering the way the participant information sheet was written. It was felt some of the language in the information sheet could be less threatening and might put people off participating in the study. The researchers took on board the panel’s advice, changed the participant information sheet and the study achieved its recruitment target. An example given from the minority of researchers who did not find it useful included not having anyone with direct experience of the condition of the topic of their research for a study about a triage system using photographic technology for wound management. Although no panel members had any personal experience one of our members who is carer for her husband who has experience, was able to offer a carer point of view and was subsequently invited to join the project’s steering group.

The most important question for us as panel members and one we ensured was included in both the panel and researcher questionnaires, was how the panel had made a difference. Table  1 summarises the themes and practical examples from the panel and researchers on how the panel has made a difference to the research.

As a panel we felt we enhanced research proposals by identifying issues from a user’s perspective that may not have occurred to researchers. Members felt they improved research studies by proposing suggestions to minimise selection bias of participants, encouraging a wider approach to intervention and outcome measures, and recommending customisation of the recruitment materials to help recruit and retain participants, and the use of more patient friendly language in information sheets. On a personal level some members of our panel felt their involvement had strengthened their knowledge of the research process and enabled them to continue to be part of a professional or academic community, which they had to prematurely withdraw from due to their condition or carer commitments. Other personal benefits included feeling they were giving something back to the National Health Service.

Suggestions on how the panel could be improved included: increasing the diversity of its membership from different social and cultural groups and to target recruitment with direct and indirect experience of different conditions and services to continue to reflect the breadth of patients which the Directorate provides services for. Researchers liked the range of ways they could contact the panel through the co-ordinator and requested if this could extend beyond the panel meeting. A request was made for longer discussion time for certain research items.

Adapting to changes in the context of the research environment

What we choose to say as panel members, and how well we fulfil our role, relates to our ability to know and learn about the organisation and the research context. This has been challenging as the “organisation” has changed around us. The composition of the Directorate’s services has evolved and we are now part of a larger Care Group in the Trust. This has had implications for our workload and the experience and abilities of panel members to remain useful and effective. Adaptation has been successfully achieved through the panel and the Directorate working together through regular consultation on the changing infrastructure and its likely significance for the skills and workload of the panel. Trust staff have adopted a shared information approach and thus fully engaging us in the process as well as research proposal content. For example, the Research Lead for the Directorate attends panel meetings and a regular item of the agenda is scheduled where members can discuss the implications of organisational change with the opportunity to discuss our ability and willingness to respond. The result for us has been heightened motivation and enthusiasm to adapt including our involvement in panel recruitment and adjusting the member mix. Thus all have worked to maintain our panel’s strong cross condition contribution.

Areas for further involvement

In our view much of the findings and metrics in this paper are due to our wide remit. We have been strongly encouraged to question and advise and this has had a significant impact on the measurement and improvement of outcomes likely to be more acceptable, meaningful and understandable for patients. However we also now see greater scope for our panel involvement in strengthening research at the input or research design stage particularly in respect to methodology, especially where this would contribute in the important areas of cost effectiveness and economic evaluation.

These may be more challenging and difficult areas for researchers to bring to the Panel but if consideration of cost and cost-effectiveness are not more frequently part of what researchers consider appropriate for panels - and we find seldom do at present - then we ourselves are not being used to maximum effectiveness. The panel can play a role in ensuring cost-effective approaches or treatments are not missed and are made available to patients. One of the co-authors of this paper has been influenced in this view through simultaneous membership of a PPI group for a study about adaptive design clinical trials and the impact on the economic evaluation of healthcare technologies [ 7 ]. This is also an example where members extend their involvement and create links with other patient panels and cross-fertilise ideas. In going forward we are keen to ensure that such future opportunities are not missed.

Setting the research agenda

The panel has been able to influence the research agenda through representation on the board of academics and senior clinicians and contribution to the Directorate’s Research Strategy 2015–2018. This helped it gain Academic Status. At an inter disciplinary level using a workshop format, we have provided a patient perspective in working with speech and language therapists in narrowing down competing priorities to a manageable number for their future research program. We envisage such strategic contributions developing and expanding. We have been invited to consider producing a panel led view on research and establishing panel generated ideas for a research agenda.

Impact on individuals and the group

The experience has been a very rewarding one in the main. There has been a sense of building working relationships and partnerships between Trust staff and ourselves that have been primarily positive and open. We have concentrated on giving ideas and sharing information as opposed to focusing on what is wrong or appearing to criticise. Without holding back on any concerns, we feel we have gained confidence in contributing constructively. Whilst striving to maintain objectivity, we have appreciated the insight we have been allowed into the challenges of the NHS environment. Finally there is gaining considerable satisfaction in being able to “give something back” through helping staff improve their proposals and secure approval of funding. These reflections are consistent with some of the practices of appreciative enquiry [ 8 ] in particular where stakeholders such as us are engaged to determine change by focusing on what is working well and doing more of it.

Future development and suggestions for improvement

We suggest there is much added value from investment in the panel through maintaining or increasing the contribution some members are able to make outside the panel. This is important for the transference of ideas and knowledge these contributions can create as well as forging mutually beneficial relationships. This includes dissemination through participation in public engagement events and more interaction with researchers and involvement in the research process itself including membership of steering groups for research trials or being a subject or volunteer in a study.

This evaluation has identified the importance attached to maintaining the appropriate gender, age and cultural balance within the panel as well as the diversity of the conditions, which the Directorate serves. We have recognised this as a future priority for us to assist with.

An illustration of the importance the Directorate attaches to our involvement is our representation on the academic board, including the Chair. Although now well established, we see this relationship very much developing in the future: we play a full part in all discussions at Board level and in turn report to the board as PPI progresses and is evaluated. Indeed it was as a result of this that at Board professorial level it was suggested that we write this paper and put it forward for publication as a PPI outcome and discussion document worth sharing with others.

Finally as we gain further experience we anticipate greater value added from patient panels working together to gain maximum benefit from our time commitment and the NHS resource investment in our support. The involvement of our members in other groups has opened up a network of local, regional and national links, which is a vital and reciprocal resource for improving patient focussed research and outcomes, and one which we will continue to foster.

Our involvement in the development of tools to evaluate our impact has helped ensure that measurements are meaningful from a service user perspective, and outcomes important to this group are included. In addition the results from the evaluation has improved our understanding of what aspects of our involvement work best across different contexts in which we operate, whether providing feedback to a researcher about the accessibility of their recruitment materials on a particular researcher project; to influencing the Directorate’s research agenda. It has also highlighted areas for improvement. This will help sharpen our focus on how we need to develop membership and activities to maximise future resource investment in our remit and activities. In addition we feel service user involvement in the provision of advice about cost and other methodological implications important to NHS decision making should be prioritised and that sharing our learning through greater networking with other groups is needed to maximise our own value, effectiveness and the resource justification for PPI.

Abbreviations

National Health Service

Patient and Public Involvement

Staley K. Summary exploring impact: public involvement in NHS, public health and social care research. Eastleigh: INVOLVE; 2009. http://www.invo.org.uk/wp-content/uploads/2012/01/INVOLVEexploringimpactSummary2009.pdf . Accessed 3 June 2017.

Minogue et al. The impact of service user involvement in research. Int J Health Care Qual Assur. 2005;18(2):103–12.

Staley K. Research Involvement and Engagement. 2015;1:6: 1–10.

Staniszewska, et al. Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact. Int J Consum Stud. 2011;35:628–32.

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INVOLVE: Briefing notes for researchers, February 2012. http://www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf . Accessed 13 Jan 2018.

Popay, J and Collins, M (editors) with the PiiAF Study Group. The Public Involvement Impact Assessment Framework Guidance. Universities of Lancaster, Liverpool and Exeter. 2014. http://piiaf.org.uk/documents/piiaf-guidance-jan14.pdf . Accessed 3 June 2017.

Flight L, Brennan A, Todd S, Julious SA. Adaptive Design Clinical Trials and their Impact on the Health Economic Analysis of Healthcare Technologies (NIHR DRF-2015-08-013). Available online at https://www.sheffield.ac.uk/scharr/sections/dts/statistics/msg-research/lfnihrdrf . Accessed 19 June 2017.

Whitney D, Trosten-Bloom A. The power of appreciative inquiry. San Francisco: A Practical Guide to Positive Change. Pub. Berrett-Koehler; 2010.

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Acknowledgements

We would like to thank the members of the Sheffield Teaching Hospitals Therapeutics and Palliative Care Research Panel, Academic Research Lead Professor Sue Pownall and Research Development Officer Dr. Sally Fowler-Davis. We would also like to thank STH Clinical Research Office, and Laura Flight, NIHR Research Methods Fellow, University of Sheffield.

The Panel is funded by the Combined Community and Acute Care Group, Sheffield Teaching Hospitals NHS Foundation Trust. The Panel members volunteer their time freely.

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All data generated or analysed during this study are included in this published article.

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JG, SF and SAE have been involved in drafting the manuscript, revising it critically and have given final approval of the version to be published.

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Correspondence to Sabrina A. Eltringham .

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JG, is Chair of the Therapeutics and Palliative Care Directorate Patient Research Panel and Panel representative on the Academic Board for the Combined Community and Acute Care Group, Sheffield Teaching Hospitals NHS Foundation Trust.

SF, is a member of the Therapeutics and Palliative Care Directorate Patient Research Panel and Panel representative on the Academic Board for the Combined Community and Acute Care Group, Sheffield Teaching Hospitals NHS Foundation Trust.

SAE is Co-ordinator of the Therapeutics and Palliative Care Directorate Patient Research Panel and PhD Fellow at Sheffield Hallam University.

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Gordon, J., Franklin, S. & Eltringham, S.A. Service user reflections on the impact of involvement in research. Res Involv Engagem 4 , 11 (2018). https://doi.org/10.1186/s40900-018-0095-1

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A key part of being a social work student is service user feedback – why does this stop after qualifying?

Ryan wise looks at the relationship between social workers, systems and feedback, and how the profession could do more.

by Ryan Wise

A key part of most, if not all, student portfolios is service user feedback. The student is required to engage with individuals, children or families to think about their approach, professionalism and their ability to be supportive and effective. Students are encouraged to think creatively about how they obtain feedback in a manner which demonstrates an understanding of power.

Seeking out feedback supports a student in developing skills of collaboration and humility. I found it provided a straightforward way of reaffirming the position of the professional as working on behalf of the client, be it the child or adult. Our role as a social worker is to provide an excellent service through advocacy, respectful relationship building and honest, open practice.

The social worker is a state employee and the position of the state is to support and help citizens thrive and live independent, safe and nurturing lives. Feedback enables a social worker to understand and appreciate how they may be doing in providing this service.

From personal experience as a social worker, practice educator and now engaging with local authorities outside of direct practice, I find the relationship with feedback can change once education ends. There are positive examples of feedback shaping local authority practice but I think it is important to consider feedback in more depth, for example, both at a system level as well on a relational level between practitioner and individual.

Feedback requires a sharing of power, a recognition that the family or citizen is an expert of their own lives. With excellent practice seemingly inextricably linked to strong relationships and collaborative working I wonder if the role of feedback is as promoted as it could be.

Encouraging parental feedback

We are all aware how bureaucracy can stifle good practice but also how a sensible and realistic approach to paperwork and process can allow and support better practice. If we consider the forms, systems and processes synonymous with current practice, how much of an assessment or report focuses on the feedback of families? We are all familiar with boxes or sections named ‘Parent’s views’ – this may be filled with an account of what a mother or father may think about the presenting situation – but is it common place for systems to encourage parental feedback of the service they are receiving?

My hypothesis would be that the importance of feedback changing is a symptom of the variance between education and practice. The ideals of ethical and collaborative practice can be lost once we start in organisations. The responsibility sits with both the organisation and practitioners to create relationships where power is addressed, that seek out feedback and engage citizens to lead on their experience of services.

I often wonder if in risk-averse systems there is an ambivalence in some quarters to recognise feedback from families and sharing that power as the right thing to do. Do systems and social workers feel prepared or backed to offer that level of equality? Do we hide behind our power, are we fearful of asking for feedback due to the risk of muddying the waters further when holding a position of protecting children but supporting families?

How does the question of feedback make us feel?

The purpose of this piece is in some part an invitation to consider the relationship with feedback in the sector. I would guess there is a spectrum of approaches to feedback both on an organisational and individual level. From an organisational perspective, I wonder how different responses may be to the questions of how does your organisation engage children and families to learn about what you are doing well, what can you do better or do differently?

How does the question of feedback make us feel, and why is it that way. Such questions I think are useful in exploring our own values and approach to practice.

A final thought is if the sector agrees that we want services to be shaped by those who use them?

I strongly believe they should, but I wonder if this shared universally. If we do indeed wish this to be the case, I wonder how, if we are not actively engaging in feedback, how do we know what we are doing is useful or in line with what is needed for families?

Or to reframe this, if we know that there are different approaches to feedback both personally and organisationally, what might this mean for consistency of service for children and families across the country? Similar to how thresholds have been described as a post code lottery, is the way we approach working in partnership as set out in the Children Act similarly different across the board?

Ryan Wise is a social worker at the Social Care Institute for Excellence. He tweets at  @ryanwise18 .

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Reflection and Reflective Writing - Skills Guide

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Reflecting on Feedback

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Reflecting on feedback

What is reflectiong on feedback?

Feedback is designed to help you to identify your own strengths and weaknesses in a piece of work.  It can help you improve on your work by building on the positive comments and using the critical ones to inform changes in your future writing.  Therefore, feedback forms a critical role in your learning and helps you to improve each piece of work.   As with all reflection, reflecting on your feedback should follow the three stages of reflection outlined in earlier in this guide.

What should I do with feedback?

Try to identify the main points of the feedback.  What does it say?  Can you break it down into main points or areas of improvement?  Writing these down can be good to refer to later. You may find keeping all of your feedback in one place helps, as it makes it easier to look back and identify common mistakes.  Identifying the main points of the feedback is the descriptive stage of reflection.

Once you have done this, move on to the critical thinking stage.  How do you feel about the feedback?  What are you particularly proud of?  Is there anything you are disappointed by?  Are there any points where you need further clarification from your lecturer?

Finally, there is the future focused stage of reflection.  How will this feedback influence how you complete your next assignment?  What will you do the same?  What will you do differently?  You may find it helpful to put together an action plan ready for when you begin your next module.

VP Education's Feedback Guidance

Feedback guidance.

Reflecting on Feedback Video - 2 mins

Naomi discusses top tips for reflecting on feedback from your assignments.

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• ASYE templates

In this section

• Assessments
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• Co-ordinators and senior managers
• Quality assurance and continuous improvement
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• Examples of good practice in the delivery of the ASYE programme

The templates and guidance should be used to complete the Assessed and Supported Year in Employment (ASYE) by those working in both child and family and adult services.

The portfolio templates and guidance are applicable to NQSWs completing their ASYE programme across all sectors (local authorities, private/voluntary/independent) and all services (child and family, adults and mental health). They should be used by NQSWs, assessors and employers.

Although the ASYE is not mandatory, we strongly recommend that organisations use the Skills for Care templates as it allows for more effective quality assurance, moderation and consistency across England. 

For some NQSWs with specific support needs, the accessibility of the templates will be enhanced by changing the font and/or background colour. Where this is the case, it would be a reasonable adjustment to amend the font and/or background colour of the templates to support the NQSW’s reading and comprehension of the template.

If you're using the old templates (pre 1 September 2022), the link(s) to them are at the bottom of this page .

Templates for each ASYE stage

Part 1: Beginning the ASYE

Part 2: First three months - foundational review 

Part 3: Three to six months - interim review and assessment

Part 4: Nine months - progressive development meeting

Part 5: Six to twelve months - final review and assessment

If more than three direct observations are required during the ASYE, then a direct observation template (2: DO, 3: DO or 5: DO) should be modified by changing the direct observation number in the heading of the form.

The NQSW PQS (KSS) self-assessment template is an agency form which should map the NQSW's knowledge, skills and practice against the relevant PQS (KSS) ( child and family or adult services ). The NQSW PQS (KSS) self-assessment template is mandatory across all child and family services across all sectors (statutory and private/voluntary/ independent). In child and family services this template should be completed at the beginning, midway and towards the end of the ASYE. It's recommended for NQSWs in adult services across all services and sectors. 

It is not expected that the self-assessment documentation is included in the portfolio. It is the organisation's decision as to whether or not it is included. The refreshed internal moderation panel template requests only confirmation that the self-assessments have been completed. 

As part of a robust assessment, NQSWs provide evidence of feedback from people they're supporting (service user feedback). Three pieces of feedback are required (this is a minimum), so if a NQSW wanted to submit additional evidence of feedback from people they are supporting they can do so. The feedback from people being supported can be gathered by the observer at the end of a direct observation and/or through the NQSW asking a person they're supporting to provide them with feedback, sometimes this feedback will be volunteered without a request.

It's good practice to reflect on the feedback received and organisations should consider including a section for this within the agency feedback forms.  If the feedback received is challenging then the NQSW, as a matter of good practice, should reflect on it with their assessor. A new learning need might be identified through such reflection.

Part 1: beginning the ASYE   

Identification of learning and development needs at the initial professional development meeting will be supported by the completion of the self-assessment tool, which is an organisational specific form. This initial discussion will help inform the discussions at the support and assessment agreement meeting, the assessment process in the year ahead, and inform the initial professional development plan (PDP).

Completing the initial professional development meeting template with the NQSW. Setting out, agreeing and completing the support and assessment agreement with the NQSW (including roles and responsibilities). Prompting and enabling the NQSW to reflect on the year ahead.

Professional development plan and learning agreement

The following video provides information about the resources available to support this stage of the process, which is vital at the beginning of the programme.

Duration 18 mins 10 secs

Part 2: first three months - foundational review 

NQSW  

Development of critically reflective practice, identification of progress and continuing development needs, planning for the three month foundational review. Submission of work product(s) to ASYE assessor, together with other evidence of progression, such as a direct observation (see evidence table below). 

Assessor 

Review of support and progress with reference to the NQSW’s critical reflection within the practice evidence and work products submitted.

Direct observations

This video focuses on how this is one of the key ways of providing practice evidence, as part of the assessment of each NQSW.

Duration 12 mins

Gathering feedback

This video highlights the importance of giving and receiving feedback and explores some of the principles around how it can be a positive and empowering interaction between the NQSW, assessor and others who provide feedback.

Duration 18 mins 51 secs

Progressive development of critically reflective practice, completing the critical reflection and planning for the six month interim review and assessment. 

Assessor  

Review of support and progress with reference to the NQSW’s critically reflective practice and other evidence of progression, undertaking interim assessment. Assessor to invite any relevant ‘others’ to the interim review meeting.

Critical reflection and assessment (written and oral)

Critical reflection and assessment (written and oral) – explores in more detail what critical reflection is, what could be included in the presentation (which can be written or oral) and guidance on how to prepare and deliver it.

Duration 24 mins 15 secs

Part 4: nine months - progressive development meeting  

Prepare for the nine months progressive development meeting and complete meeting template with the assessor. 

Prepare for the nine months progressive development meeting and complete meeting template with NQSW. Assessor to invite any relevant ‘others’ to the progressive development meeting.

Part 5: six to twelve months - final review and assessment  

Working towards the end of the ASYE - consolidation of learning, recording in the critically reflective practice and planning for continued professional development. Submission of work product(s) to ASYE assessor.

Final review of support and progress with reference to the NQSW’s critical written reflective piece or presentation, and other evidence of progression. Final assessment leading to recommendation. Assessor to invite any relevant ‘others’ to the final review meeting.

*There is guidance on the presentations for both NQSWs and observers.

Guidance on things you should could consider when writing your presentation and how to prepare for and deliver it.

Guidance on providing feedback to the NQSW, together with information about the assessment criteria. 

Old ASYE templates (pre 1 September 2022)

Assessment templates and guidance for adults services

Assessment templates and guidance for child and family services

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Jessica McIntosh's ePortfolio

Ma1 learning journey, my reflection on feedback.

Personally, I feel that feedback is very beneficial. Feedback is given to improve you as a person and ensure that you can do the job to the best of your ability. I am a dancer and a horse rider and both these sports involve a lot of feedback. You should not feel embarrassed by negative feedback as it is only being given to make you better. Both in horse riding and dancing, I have had private lessons during which I was given a lot of feedback and criticism to take on board. I have learnt not to be offended by it as my teacher only wants me to be the best that I can. Also in group lessons and classes, we learnt to give feedback to each other to ensure that we were all kept safe and that our group could come out on top and win competitions.

The benefits of feedback is that it helps you grow as a group. It makes you feel that you can rely on others and that they will help you when needed. It also helps you to improve your skills and allows you to identify where more work is needed. Also sometimes, having another person’s perspective changes your view on something and allows you to develop a deeper understanding of the topic. However, a disadvantage of peer feedback is that it could be used incorrectly. Sometimes, people respond harshly when they originally didn’t intend to which can led to disagreements and frustration.

I have found that receiving postive feedback makes me feel more confident in my work. Any negative feedback I receive makes me even more determined to work harder to ensure that I do not make the same mistake again. I feel that when you are given feedback, it encourages you to work harder due to the confidence boost and also because you want to prove to the person that you have taken their views on board and have improved.

When given feedback, I find it easy to give positive feedback but I find it more difficult to express the negative feedback. I have learnt that if you word it in a certain way it comes across better. For example – maybe next time, you should think more about…

Feedback is something which is used throughout life and as a teacher it is important to give feedback to pupils and fellow teachers. As a student teacher, I will be receiving a lot of feedback from lectures and teachers on my placement and I understand that not all of it is going to be positive but I know that it will make me even more determined to succeed and try harder.

2 thoughts on “ My reflection on Feedback ”

I really enjoyed reading your post. I agree with what you say about positive feedback building confidence, and how negative feedback can make you all the more determined! It’s sometimes difficult to not take comments personally, but as you say, feedback is something used throughout life, and as teachers we need to embrace the use of it to our advantage and to encourage our pupils in the future.

I love how you associate critical feedback with determination to improve. We could all take a leaf out of your book here! It’s true that no-one can become an expert at what they do without constructive feedback from others, and so I feel that you have a really healthy way of viewing it.

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