Karina Sale, Engagement Manager at NCL ICB, recently interviewed one of our residents Samantha, who is a lived experience member and is currently supporting the co-production of the personal health budgets procurement process. Read the full Q&A below.
Q: Please introduce yourself.
A: My name is Samantha, I live in Islington and I’m the mother of an almost 18-year-old with complex health needs, disabilities, physical disabilities, and learning disabilities. I’m a single parent and I’ve been looking after him on my own since he was four years old.
Q: I understand that you’re working on a co-production group for lived experience members. Would you like to explain what you’re doing within the group?
A: This group consists of people like me who are parents of individuals with complex health needs, as well as adults who have complex health needs and are managing their own personal health budgets themselves. We’re involved in helping to produce a whole range of tools around what I see as empowering people to take control of their healthcare, especially when it comes to long-term healthcare needs. We are working towards producing a directory of providers for personal health budget holders, that they can use to help them manage their personal health budgets.
It’s a very simple concept and it sounds a bit more complicated than it is, but I think it’s very much what is needed. For those of us who do have personal health budgets, it feels like we’ve been floundering for years. Currently, it is a bit of an ad hoc system and we just tend to figure it out as we go along. Whereas this work suggests that the ICB is going to help vet providers to make sure they meet certain criteria and make sure they adhere to certain professional and legal standards, and so on. This means that I as a customer, or at least as a representative for my son, can then shop around for what I feel is the best provider of support for my son’s day-to-day personalised care needs that allow him to live at home independently.
Q: What does coproduction mean to you? And do you feel like your views are heard in this group?
A: Co-production has evolved a lot in my son’s lifetime. When he was younger it was very much top-down. There were a lot of systems in place, but it was a very confusing picture and I was a first-time parent. It just felt like everything was told to me; what to do, how to do, when to do it, and repeat. There seems to have been a slight shift in the views of families, children, and young people being sought directly, and that’s when I started to hear about personalised care and co-production. It made so much sense to me. It was what I felt as a parent, instinctively, because I only knew my son and I only knew his needs, so that’s all I focused on was caring for him, and trying to create opportunities for him in his life so he could enjoy himself. Whereas the system previously seemed very ‘one-size-fits-all’ and you have to fit into predefined moulds, which didn’t work for my son and his friends, and the families that I know.
Co-production for me means listening to the voices of the people who are living that life and inviting them to speak, to have their voices heard, to share their experiences. It also means working together to improve existing systems, but also design new systems. It’s not just assuming existing systems are going to work forever in the same way. Those of us who live with these systems are often the best placed to give a critical review of what works and what doesn’t, and what improvements can be made. It goes hand in hand and it’s just like any other part of life when you start talking to another person, you tend to bounce ideas off, you get more creative, and you get innovative. You realise how common problems are that you share and how you might have thought of similar solutions and then you realise we can mobilise together. This is much easier if we work on this together than if I try on my own. It’s such an obvious step to take but it’s taken a long time to get there, although I think we’re already starting to see some of the benefits of it.
Q: What have you gained from being part of this journey?
A: That’s an interesting question. I hadn’t thought that I wanted to gain anything, but I took this journey wanting to give something, which is the benefit of my experience with my son, accessing and navigating services on his behalf. What I have gained is realising how common our experiences are. Being the parent of a child with complex health needs and disabilities makes you feel like you are part of a very, very small group of people. Your life is very focused on very fine details of day-to-day life and although you recognise there are many more families in your position, being able to link in with others and realising they’re following the same path that you are, and that hearing the same feedback from professionals and practitioners, they’re feeling the same frustrations. You know the frustrations that exist from a system that is supposed to be there to help make life better, or at least make life equal but they’re doing the opposite constantly. It’s a relief to know you’re not completely on your own in that. Although it’s bittersweet because you feel sad that you’re not alone in these struggles. There is a commonality over these problems, and it is frustrating that a solution hasn’t been discovered yet.
I’ve also gained a bit of confidence because I think as a parent, I just get on with being my son’s mother. There’s no award ceremony, annual review, supervision, or feedback. There is the relationship I have with my son and the relationships I’ve made with other families and built with people who are involved in his care. It’s something that I can offer feedback from my experience, as painful as some of it has been to gain, and it has been challenging and frustrating at times. There are also positives from it and I can bring that back out into the world. It doesn’t just have to stay with me and my son, it can go beyond us so that other families can benefit, other children, and the wider society can be helped because society doesn’t properly cater for people with very complex health needs. It’s us trying to fit in. If you can make the difference of people understanding conditions better or the physical environment being more accessible then that feels like a huge win to me and an important step forward.
Q: What would you say to others like you with similar experiences or circumstances that may be interested in co-production and supporting service improvement or redesign?
A: I do have this conversation with friends of mine. I’ve always felt it’s important to listen to people and not just as a parent. I felt this all that way through my whole career, through my whole life. I’ve always been encouraging people to speak up and have their voice heard. I have some friends who were in a similar position to me, but who are less willing to get involved.
I’d encourage people to do this because everybody’s voice needs to be heard. Everybody’s situation is unique and different, however, there are common trends, and common patterns, and if you don’t come forward and share your experience, good or bad, the services may never ever know about it, and you may suffer. Your loved one may suffer and other people around you may also suffer. However, if you do go forward, there’s so much benefit from that. Sometimes it’s the quietest voices that need to be heard. I’d really encourage for the sake of making a difference in the life of a loved one as well as being able to recognise you have something of value to offer. I’d really encourage it, even if you try and decide it’s not for you, give it a go.