This blog was written by Lynne Craven, who took part in our first webinar of 2020, which explored a clinical case of a person known as ‘Paula’.
I joined the Rethinking Medicine webinar on Monday, not because I am a clinician, rather because I am an interested patient. I heard the story about Paula and I can’t stop thinking about her and thinking that I could have been like Paula.
I was diagnosed with relapsing remitting MS in 1995. By the time I got my diagnosis I was ‘well’ again and told to go and get on with my life! That diagnosis left me feeling pretty sick though, I couldn’t get MS out of my head and I definitely couldn’t get on with my life. Then I was diagnosed with hypothyroidism, and then familial hypercholesterolaemia (I ignored this for 10 years) I could have easily become anxious and depressed, I was fearful about my future and at times angry. I could easily have sought solace in cake, chocolate and Chardonnay. And indeed at times I did! I could easily have put weight on, become obese and developed Type 2 diabetes.
So what happened? It was 1997, I’d spent two years feeling ill when I wasn’t, then, I had a relapse! I couldn’t walk properly (these days that zig-zag stagger is my proper walk). I went to the GP expecting answers and solutions. I soon realised he didn’t have any after he asked me, “Do you think you might be having a relapse?”
I was stumped! He didn’t seem to know and I definitely didn’t know. It was a relapse and it began to dawn on me that the NHS didn’t know how to ‘fix’ me. The people around me didn’t understand, I felt very alone and lost. But I had shifted a bit because I was beginning to realise I had to change. Two more years passed, then, in 1999, I was in the right place at the right time.
I attended a Living Well course. It was actually the Stamford chronic disease self management programme later to become known as the expert patient programme. It didn’t make much of an impression on me straight away, that came later. I did however meet some other people who were in a similar position to me, living with a long-term health condition that didn’t have a cure and that clinicians didn’t seem to have any answers for. I met other people who were also struggling and I didn’t feel so alone. The course introduced me to some skills like distraction, positive self talk, how to communicate better with family and friends, action planning and problem-solving. These days we’d call that peer support!
I’m not like Paula, though I have met many people like her. Why am I different?
I went on to train as a volunteer deliverer for the expert patient programme in 2003 and that’s when I began to learn about self-management, that’s when I began to get some control in my life. I was developing my knowledge, skills and confidence to self-manage by showing others how to do it.
I’m not like Paula, though I have met many people like her. Why am I different? I think I have accepted that I live with a long-term condition that cannot be cured by medicine, the other two can, but only if I engage and do my bit. I have a role to play in managing the impact MS has on my life. I can’t do it alone, I need the support of family, friends and a variety of clinicians. I have re-thought my role as a patient, I am no longer passive, expecting the NHS and its workforce to cure me. I now know I have a huge, important role to play, when it comes to managing my health and wellbeing. It was my peers who showed me this was possible and gave me hope.
I don’t expect to be fixed anymore, however I do expect to be supported and treated as an equal partner in my care.
What has happened to self-management interventions, led by people who are like me? There are some out there, take HealthMakers in Berkshire. You have to be in the right place at the right time. That’s not fair because some people like Paula will fall through the cracks when the NHS can’t ‘fix’ you, and rather than being shown empathy, honesty and kindness you’re told you have to ‘get on with it’ at a time when you just can’t.
I don’t expect to be fixed anymore, however I do expect to be supported and treated as an equal partner in my care. I would like there to be collaborative care and support plans, not for me, I’ve got my own virtual one, but for Paula. I just wish somebody like me could have connected with her, that she had been in the right place at the right time.
I spent the day in hospital yesterday receiving new treatment and everybody there was nice to me… but… they still treated me as a patient and did stuff to me and for me… and I ended up being just a little bit passive again. What happened in the end though? I connected with the other three people in there with me and we supported each other… peer support… we need more of it!
Watch last week’s Rethinking Medicine webinar.