Young people and families are your greatest asset
Not sure when, where or how often you should run a participation group? Wondering if your recruitment flyer looks a bit naff? Your best plan is to ask families what they think. When first starting out this can be as simple as asking a few people in the waiting room, but once you have recruited people to form a participation network or regular group you can ask them. Similarly, I’ve found running training to be far more powerful when co-facilitating with young people. The more decisions you can make collaboratively with families, the better.
Have a plan of where you’re headed…
It’s always good to have a participation plan to help motivate you and the service on the journey of involving families in how the service is run (I wrote a tongue-in-cheek piece about participation perfection here). Looking back, I would have written this with families and had it signed off by managers so that longer-term goals were more clear. I’d also try to work on one ‘main’ goal at a time to ensure that none get lost on the wayside whilst you’re trying to do other things.
…But start with ‘easy wins’
Long-term goals are all well and good, but don’t underestimate the value of an ‘easy win’. Tangible, relatively simple participation activities or service improvements can have a big difference to the service and how participation is perceived in the team. They are particularly important for those employed on temporary contracts to help demonstrate impact (I’ll talk about this more later on). One of the most striking ‘easy wins’ was when we received feedback asking for more ‘teenage friendly’ books in the waiting room – one of our Psychologists brought in some that her children had grown out of. Quick, free and it made the waiting room look much more welcoming. Successful job done.
Be honest about what you can’t change
Sometimes I feel like ‘You Said, We Did’ boards only seem to promote the positive changes services have made, rather than admitting to things they have done wrong. Sometimes there are things services can’t change, no matter how much they try, and we don’t get it right all of the time. But by being transparent about these, as well as successes, you can develop a culture where service users and carers feel it is worth giving feedback because it will be heard.
One of the best things about being a participation worker is the opportunity to be creative. This goes not only for engaging families, but also in the projects you take on and the people you work with. I was aware we needed to increase how many feedback questionnaires we collected in the team and we kept getting requests in the team from Psychology graduates looking for experience. Pair the two up and I had a volunteer Patient Experience Research Assistant working with me for a day a week. We had two lovely volunteers during my time in Camhs (one left because she gained a paid Assistant Psychologist post), and they were really helpful to free up my time for other participation work. Similarly, one of the best ways I found to gain feedback from families was a poster and post-it notes in the waiting room. Simple, but important.
Measure the impact
I’ve talked about this before (check out this poster I presented with Duncan Law recently) but it’s worth mentioning again. Without tangible impact of the effect of participation on services, young people and families, it’s difficult to make the case for permanent participation worker posts. While the moral imperative for involvement is convincing, it isn’t enough when services are under such financial pressure.
The jury is still out on the best way to demonstrate impact and it’s unlikely there’ll be just one way – otherwise we’d have figured it out by now. That said, from experience, I recommend using some kind of skills tracker with the young people in your group (either Lucy Macgregor’s or the Goal-Based outcome measures); teaming up with trainee Psychologists and Psychiatrists to conduct evaluations of specific projects; and keeping all of the informal feedback you receive in one place (I had a folder on the Camhs shared drive). Have other ideas? Post in the comments below or use #ParticipationImpact on Twitter.
Working with young people, but not clinically; trying to change services but not as a manger…the role of the participation worker is a unique one and it can feel isolating at times. One of the best meetings I go to is the Participation Workers’ Group run by the London and South East CYP IAPT Collaborative. It’s a great place to share frustrations and learn about all of the innovative participation work happening in other services. I’d strongly recommend regular supervision with someone (ideally a senior manager) who is supportive of participation too. Likewise, Twitter is a great way to find out what’s going in all things involvement-y: take a look at #cypexp #involvement and #camhs.
It’s only after taking a step back from my participation role that I fully realised what an incredible job it is. Take time to think about what you have achieved in a participation role. Frustrating? Sometimes. Rewarding? Definitely. Being a participation worker is a privilege, and I would recommend it to anyone.
Sophie Allan was, until recently, Head of Patient and Parent Involvement in Cambridgeshire and Peterbrough Community CAMHS. She’s now an Assistant Psychologist in an Early Intervention in Psychosis service.