A different kind of normal. I work in chronic pain. It’s not what everyone would choose. In fact, lots of people have asked why on earth would you wanna do that? The answer to that’s really easy, I absolutely love it. I work at the Bath National Pain Centre; I’ve been there for nearly 15 years and we are a NHS national specialist centre for people with pain associated disability and it’s for people of all ages. So, you get to work with kids, adults and their families and my patients come from all over the country to stay residentially for treatment. I work as part of a massive tree team of different professionals, and we get the time to actually get to know our patients and their. Families. The patients that I see, they are not coming to us because they haven’t engaged with local services, or they haven’t been trying hard to help themselves. The people that I see have generally tried absolutely everything to reduce or get rid of their pain and it hasn’t worked. The pain is still having a massive impact on their lives. 

So pain rehab is not about reducing or getting rid of pain. What we do is we are trying to help people to get fitter, get stronger, do more of the important things in their lives with ongoing persistent pain. Now this story is about autism. Autism is a complex developmental difference it affects 1 to 2% of the population. It is more common in men than in women, and around 50% of people with autism have a learning disability. Now that’s important because the patients that I work with are predominantly female. It’s very rare that any of them have a learning disability. So based on that information, the number of people I should be seeing with autism is really tiny, right? Now, as part of the work we do in Bath, we run three-week adolescent group programmes and that’s that young person and a parent. This is one of those groups. We’ll do a little circuit. And in a group like this where you have 5 or 6 young people, it’s really common for one or two of them to have autism. That’s our normal, actually that’s the way it’s always been. So this is something we were really curious about and it’s actually something we thought we probably needed to find out more about. So what did we do? We contacted lots of young people on the waiting list for a group programme like that and what we found out was that a quarter one in four of our young people waiting for programme was autistic. They are massively over representative in our pain service, but why is that important? Why do we need to know? Why do we need to consider this? I’d like to tell you about one of my patients, Grace. Grace is 15, she’s smart, hard working, she’s interested in history and politics. She also has a diagnosis of IBS, and she’s got widespread joint pain. The first time I met Grace was when she came for her assessment, she came with her mum. It was my job that day to do a full bisection social assessment on behalf of my team and my clinic was running very late. I remember feeling very stressed. I’m sure you’ve all had experiences of clinics just like that and if I’m completely honest with you, I was kind of hoping I can make up some time in my next assessment if it all went smoothly. So I asked Grace about her pain and her previous medical history and what treatments and investigations she’d had so far. I thought Grace was quite shy. She wasn’t really looking at me, but Mum was answering all the questions and we were rattling through them, so that was great. I asked Grace about school. Mum said she’s on a reduced timetable, but she’s not actually going in very much, but she’s doing great academically, she does a lot of her work at home, so they weren’t too worried. I asked about friends. Mum said she hadn’t really stayed in touch with people from school and she’d always been very mature for her age. Hadn’t, really. she’d always kind of gotten better with older children and adults. I asked about her routine and her sleep, Mum said she was struggling to get to sleep at night, sometimes waking because of the pain, so she tended to sleep in in the morning, she was always tired and that was one of the reasons they were struggling to get her into school. Physically, Grace could walk without aids, she had a wheelchair for when she went out, or for longer distances but generally, she was spending most of her time in her room. She wasn’t really going out at all. Now, when Grace came on our three-week programme, I got to know her properly. In fact, we talked about her assessment and I asked her what it was like for her. She told me she never really liked unfamiliar places, it was too bright, too loud, the fire alarm had actually gone off in reception while she was waiting to come in. On Monday afternoons, she usually went into school, that was her routine, those were the things that were important. Those are the things that were have been impactful to her. She remembered that they asked so many questions that she couldn’t keep up with what I was asking, but she noticed that if she nodded along to whatever mum said, then I would move on so that was great. We talked more while she was with us about friends and school. She told me she’d never really liked school. She’d always felt different. She didn’t really understand kids her own age. We talked about routine, Grace told me mornings, particularly school mornings at home, were horrible, they made her feel horrible, everyone was rushing, everyone was getting cross trying to get her little brother and sister to school. It was nice, it was easier to stay in bed until everyone had gone. It was also really nice to stay up once everyone had gone to bed. It made life easier. What was a group programme like for Grace, now our group programmes are run a bit like a school day. We have sessions from 9:00 till about 4:00. It includes physiotherapy, activity management, pain, education, communication, healthy living, psychology. Grace did really great with some routine and structure. She found that her sleep improved, she was less tired. Grace would be the very first person to say that exercise is not her thing. So getting to know Grace and her interest was really important. For example, Graces love of politics, what she really wanted to do was be able to get up on stage and do debating and in order to do that, she need to be able to get up some steps. She needs to be able to stand for a for a prolonged period of time. For her, they were reasons where it might be worthwhile to get a little bit fitter and a bit stronger. We checked out Graces understanding of the sessions and if we slowed things down and we used diagrams that really really helped. The great thing about Grace is that once she saw the point to something she tended to stick at it much better than anyone else in the group. We helped grace to communicate with her family, particularly mum and school, about the things that she found challenging in that particular environment and she was able to get more support at school with what she needed. Now Grace is just one patient and she has her own completely unique challenges and strengths. But what we do know now is that we are going to see lots of neurodivergence in chronic pain settings. We need to wise up. We need to be aware of how it might present. And we need to be aware of the risk that pain and health problems are going to overshadow autism. I think we can make changes. We can provide more personalised care. But I think embracing different differences is the only way we can be truly, truly help our patients. That’s it. Thank you.