Lived experience and the power of learning What attracted you to the Peer Leadership course? I think originally it was for professional reasons. It’s about personalised care and we predominately work with people who receive personalised care so I thought it would help me know a bit more and support customers a bit better. But then I realised it was really good for my personal life as well. How would you describe the course? It’s quite eye opening. I learnt things that I didn’t know. I’ve been with consultants my whole life and I learnt things about my rights as a patient that I had no idea about before. It’s quite empowering as well because you realise you have more rights around your own care and your own treatments. For example, I didn’t know you can request your own GP surgery, even if you don’t live in their area. When I lived in Shoreham, I had an amazing doctor, he got me diagnosed with Ehlers Danlos Syndrome (EDS) so I loved him, because I’d been fighting for a diagnosis for whatever was wrong with me for about 13 years, so the fact that he knew what I had straight away was brilliant and I would have loved to have stayed on with him. But when I moved out of the area, I was told I couldn’t because I wasn’t near them. But it’s a patient right that you can choose your own GP surgery. So that would have been really amazing to know at the time, because I would still have that doctor. And I think sometimes all it takes is that one doctor you connect with and for me, that was him. How has the course affected/changed you? It’s changed the way I think about my own treatment options. It’s given me a bit more knowledge and power to be able to say, ‘that’s not going to work for me, let’s find something else.’ And knowing that I’m able to sit with my consultant and make a decision together and be able to tell them what outcome I want and then they can help me get there, rather than be dictated to and told what options I have. It’s changed my outlook on how I’ll interact with my consultant, and how I’ll weigh up my options and hopefully that’ll lead to outcomes that are better for me. What would you like to do once you have completed the course? Talk to my consultant first and get some better healthcare outcomes once I have all the knowledge. But I plan to use that knowledge to help my friends and family as well. It’s more about just having that extra knowledge in my head. Knowledge is power! Why is ‘lived experience’ important in decision making? Not everyone is in a little box, you have different disabilities or mental health conditions. And a lot of the time there’s a list of very strict symptoms for each of these impairments, and that’s not always the case. Everyone’s individual and everyone’s impairments all affect them differently, even if you have the same impairment as someone else. When you are making decisions, knowing how a condition can affect a person, having that lived experience is really helpful. You can read all about a condition like EDS for example, but those symptoms are not limited to what you see on the NHS website. There’s a lot of other things that are involved. Including someone with lived experience in decision making gives healthcare professionals a chance to see that people aren’t just one set of symptoms. What would you say to something thinking about starting the course? Do it! It’s so helpful and so empowering to find stuff out after so many years of being in and out of hospitals. Even if you don’t want to be a peer leader at the end of it, having that knowledge for yourself and your friends and family is so important. And if down the line you want to become a Peer Leader and pass that knowledge down to other people then that’s amazing! But for now, focus on yourself and people that you love. Having the knowledge that this course gives you will massively help you and the people around you get what they need from their care. Why do you think personalisation in care is important? Like I said before, we’re not in a little box. We all have our individuality with our personalities, our impairments, everything. No two people are the same. Personalising care to a specific person rather than a specific impairment is the way forward that will allow people to get the treatments that they need and to be sent in the right direction. One treatment that works for one person may not work for someone else. By looking at personalisation and making it all about that one person, I think it’s going to make treatments a lot more successful and improve people’s quality of life as well. Become a Peer Leader Join the free Peer Leadership Development Programme today. There has never been a more important time to help shape and influence how health and care is delivered in England. Find out more about the programme and sign up at the link below.