Meeting of the Parliament 20 December 2023
I thank Clare Adamson not just for bringing the debate to the chamber but for sharing her personal story. Like her, I had never heard of CRPS before 2010. At that time, my daughter was nine years old. Like Clare Adamson, I have not spoken about this in public before.
My daughter had a sports day. Nothing obvious happened—we did not think that she got injured at all. Perhaps she took a little bit of a tumble, but kids of that age are always taking a tumble. The next day, she woke up with the most severe pain in her lower leg and foot. Her foot was a little bit red. The pain was almost indescribable. We could not even touch her slightly because she would scream in pain.
We were in hospital for tests, MRIs and X-rays, but most of the doctors told us that nothing obvious was wrong. However, as her parents, we knew that something was wrong. We spent days in hospital. Doctors were in touch with colleagues at other hospitals, and it was suggested that she had CRPS.
That was 13 years ago. Not much was known about the condition then, and it sounds as though awareness has not progressed much. There was no support at all. We did a lot of investigation on the internet, as most parents do. Because we were desperate, we reached out to a family in the United States whose daughter had a similar story and who were going through the same as us. We even bought a DVD that came from the States on possible treatments.
For my daughter, CRPS was almost like a nervous condition that was tricking the brain into thinking that something was seriously wrong. However, physically, nothing might have been wrong at all. I am not trying to say that it is all in the head—it is certainly not all in the head. People feel real pain, but the pain felt is almost out of control and not comparable to the original injury.
For my daughter, treatment consisted of two things: medicine—gabapentin, which always sticks in my mind—and a course of intense physiotherapy. I will never forget the physiotherapy. It was almost like we were torturing her. We knew that we had to break the cycle somehow, so we were trying to get her to walk again. She was screaming in pain, and the physiotherapist was almost forcing her to put her foot on the ground, even though that must have been hellish for her. We felt that we had to do something.
A little bit more help is available nowadays. I applaud all the charities that have been mentioned and are helping in relation to CRPS. What my daughter went through was horrendous, but her outcome was a lot better than that of most people with the condition. I hope that, with more awareness, diagnosis can be quicker and easier. As awareness grows, I hope that there will also be better treatments.
I thank Clare Adamson for telling her story. I hope that we can improve the situation for many people for years to come.
17:59