Q: What motivated you to set up a patient group to support your audit?
Epilepsy12: We weren’t getting through to patients’ “real voices”; there was a distance. We were beginning to get some sense of people’s views through the patient experience measures that we’d built into the audit, but there was a strong sense that they wanted more direct “contactability” with our service. At the same time, we realised the irony that our patients had limited involvement in the design and running of the audit, and so we needed an approach that would address that.
Q: Do you have any hints or tips on how to get started?
Side-by-Side: Ask people to be involved and provide a genuine offer of real involvement; don’t just pay lip service to patient engagement. Side-by-Side was created from when we held a traditional research conference in 2014, in which we invited a group of patients to provide feedback. It wasn’t positive. We apologised and asked them to help us to make it “better” next time. This was the start of building relationships and working together to put patients at the heart of what we do.
Q: How does it work, in practice?
Side-by-Side: We have a group of patients and service users who work alongside us. They meet regularly (every 6 to 8 weeks) and we present involvement opportunities to them, while they hold us accountable to all the things we said we were going to do. We are very fortunate to be in a position where we have a participation team to support liaison such as sending email updates etc. It can take some time to set up in the first instance, but it’s so worth it – and now we’ve got to a point where the group is happy to be contacted via a quick text or WhatsApp message. We genuinely see them as part of the team; they have this wealth of experience, skills and ideas that we feel really privileged to utilise in what we do.
Q: What do you see as the main benefits of setting up a patient group?
Epilepsy12: The quality of the feedback we get has exceeded my expectations. For example, at first, when we sent the group a patient-facing report to review, I was expecting something fairly light touch, but actually the feedback was much more profound than that. Because it comes from a patient, the information comes with experience and passion. It made me realise that there isn’t anything the group can’t do. Now there isn’t a part of the process that they’re not involved with; they’re involved in the full methodology, from design to delivery.Side-by-Side: This has completely transformed the way I work, even to the point where our patients contributed to my appraisal. Working with patients means you can come out with something entirely different, but also better and more fit-for-purpose and with greater longevity.
Q: And what about the challenges?
Epilepsy12: If you’re not careful, you can be pulled in different directions. We needed to ensure that everyone involved was aware of each other’s visions and perspectives. So, we focused on getting a ‘balance of autonomy’ among the different groups. But it’s a delicate balance; a dance between autonomy and empowerment. When you start to empower others, you are admitting that you might move the power base elsewhere – and there’s a vulnerability to that. You’ve got to accept that you are not always in control of where you’re going.
Q: How do you ensure appropriate representation in the project?
Side-by-Side: Over the last year, we have expanded the group by involving people from across Solent NHS services. We did this by reaching out to different charities and communities. As a group, we continuously review and work together to improve the diversity of Side-by-Side.
Q: What are your main learning points now that the project has been running for some time?
Epilepsy12: We’ve had a growing perspective of how to engage and embed young people directly in the audit. Initially, we had quite a narrow view of what an audit was, thinking it was about young people. But now we think of it as being with young people. In fact, we don’t really think of it as an audit anymore; it’s more of an improvement project with young people that uses audit methodology.
Side-by-Side: We have come a long way but we have made mistakes along the way (I actually wrote a blog about when it goes wrong). The thing I love most about our group is that we have an open and honest relationship, where they can feed back to us ‘in the moment’ and we learn how to improve. We’re still learning but I do think that having a relationship where people can give constructive feedback is really, really important.
Q: What are your visions for the future of your patient engagement work?
Epilepsy12: I’d like to see participation on every level. We have really strong involvement in the team and at national level, but I’d like to see participation move to more of a network model so that we can link to professional networks. There are different layers of influence, and it would be good to see our young patients involved in all those layers. For example, embedded in local teams, Integrated Care Systems (ICS), and at a regional level. Then, these networks could link up with young people with other health problems. However, while it’s not entirely within our gift to solve, we can build patient networks in the same way that we can build professional networks. Another aspiration with the audit is to build patient-facing elements into the data streams. To that end, we’re trying to get automated data flow for whole populations, to support research as well as clinical care. We’d also like to see more joined-up data – so it feels like it’s the patients’ data, not the hospital or the professionals’ data. Ideally, we’d even see ‘live involvement’ from the person with epilepsy in the audit e.g. with them filling in their forms, not just clinicians doing it for them. |
Q: Why did you become involved?
Side-by-Side: Having the opportunity to add a community perspective into projects within Solent NHS Trust, to provide a patient voice, is really important. We have something extremely valuable to add into discussions around our care.
Epilepsy12: We wanted to make sure that young people and their families were heard, since discussion and patient engagement means better care. In a nutshell, we wanted to create a gold standard in epileptic care.
Q: How did you become involved?
Epilepsy12: Initially, I became associated with different epilepsy charities, completing feedback forms etc. Then, I became involved in this programme’s Board, speaking at a conference and working with a group of others to help launch the Epilepsy Passport. But then we became keen to be more involved, to put our views into practice. Following a conference in 2019, we realised that we wanted to reach out to clinicians to look for the best ways to speak out about epilepsy care, which we did. Consequently, several clinics from across the UK got in touch and said “yes, please come and visit us”. Unfortunately, because of the COVID-19 pandemic, we weren’t able to go out and speak to people in person; however, we still made contact, but using online methods instead.
Q: What happened next; what did your involvement look like, in practical terms?
Epilepsy12: I went to an initial meeting, and something really clicked. The group started creating videos and analysing different sorts of leaflets, sending them to the doctors to say, “look, this is what young people really want”. More and more clinics wanted to come and speak to us, and we ended up embarking on a sort of ‘youth advocate road trip’. We worked out how we could make a difference going forward. Since then, we’ve been able to think about good practices, such as making a welcoming environment and having good conversation starters.
Side-by-Side: We are involved in a lot of different ways, for example in the recruitment of staff. I helped to interview for a research nurse; I was sent all the relevant application forms and was able to adapt the interview questions. During the interviews, I was given the opportunity to ask a set of questions, and then I was involved in the discussion afterwards. We are also regularly involved in co-producing training on research, improvement and working alongside people. I have been involved in the content and planning from the outset, and in the delivery on the day. It was clear that the attendees genuinely valued our input too. A lot of opportunities can be fulfilled online, which really helps.
Q: What do you enjoy about participating in a project like this?
Side-by-Side: It’s a great opportunity to be part of a panel of people who are all very lovely and positive; all with different backgrounds and different skill sets, which is what makes it so interesting. We have the ability to get involved in lots of different sorts of activities, which is great. It’s really enjoyable and rewarding to see the difference our contribution makes.
Q: Are there other benefits to being involved, particularly those you hadn’t envisaged at first?
Epilepsy12: We have managed to find our own unique way of engaging with doctors. Our discussions are interactive, and we get to hear their views. By being part of this work, I’ve been exposed to so much and learnt a huge amount about the epilepsy world.
Side-by-Side: The more I’ve become involved, the more I have gained confidence, and that seems to stand for the group as a whole. We understand more and more the important part we can play, and we’re always made to feel such an integral part of the team. There’s no divide between volunteers and paid members of staff, and that’s why I think it works really well. There’s a great level of mutual respect.
Q: What have been the most challenging aspects of being involved?
Epilepsy12: Epilepsy care can be a very difficult subject for young people to talk about when they are going through it. It can make you feel very vulnerable, and you need to be sure that the group is a safe space. I needed to be happy that I would be able to talk about my experiences honestly, as well as try to change policy and improve epilepsy care. In truth, it can also be quite challenging to get through to clinicians sometimes – you need to work out the best way of communicating, whether it’s sending emails, communicating by post or using social media.
Q: Are you paid for your involvement?
Side-by-Side: Payment was never an expectation when I became involved, but actually it does serve to reinforce the value that we bring, recognising that we are giving not just our experience, but also our time. It does make a difference and reinforces the notion that I’m worth something because I work really hard at this. Receiving payment for my contribution enhances my self-worth and, for some people, payment is what makes involvement possible.
Q: In hindsight, what would you change?
Side-by-Side: Definitely get patients involved from the start of any project, and don’t make it a retrospective activity. We can provide valuable input right from the start. A lot of people think, well, that’s a lovely idea, but I wouldn’t know where to begin. But you can start small – maybe just through an informal conversation – and work from there, so it isn’t insurmountably difficult or time consuming.
Q: How do you see this work developing in the future?
Epilepsy12: We’re already starting to see the sorts of changes we want to see – for example, having families and youth advocates lead the work. From a young person’s perspective, we have this group where young people are sharing their views and actually having a say; and I think that will continue. However, we do want our partnerships to grow, joining up with key allies – and that will be the next phase for us. |
