Hansard

I thank colleagues across the chamber who will speak in the debate and all those who supported the motion.

Complex regional pain syndrome, or CRPS, is a rare neurological condition that I presume many in the chamber will never have heard of. If truth be told, I wish that that were the case for me, too. However, my son, Aidan, has CRPS. He is 26 and on the first steps of a professional career that he loves. I have never spoken about him in Parliament before—I felt that that would have been an intrusion into his privacy when he was younger—but I have his blessing to do so this evening.

Aidan loved rugby. He was a Dalziel dragon from the age of five and was a dedicated and talented hooker. In his first year at high school, he broke his wrist on the rugby field. That would be traumatic enough for any child or their parents, especially as it involved an operation and a pin, but we thought that it was mechanical, fixable and not threatening or life limiting. However, we were wrong.

Aidan complained of pain following the injury. Despite that, he continued to get on with rugby and karate, and he continued to play clarinet at school. He is a talented musician and, at the time, he hoped to study at the conservatoire.

Months after the stookie came off and the wound healed, Aidan came home with a strange swelling on his knuckle. The school had had the foresight to draw a circle around it—it was like a grape on his knuckle—to which Aidan had added a smiley face. Our general practitioner saw him and, within a few hours, Aidan was in accident and emergency with a suspected spider or insect bite or, in the worst case, sepsis.

That was the start of a medical pathway involving multiple disciplines, X-rays and MRI scans. It involved ups and downs, including a further visit to A and E, where he was—in my opinion and his own—coerced into saying that someone might possibly have bumped him in the corridor at some time in the school day and that that would have led to the swelling on his hand at the time. That did not happen—he had not had an accident.

A further low point was when an orthopaedic consultant suggested to him that he was having bad dreams at night and was banging his wrist on the wall while asleep. Can members imagine that teenage boy feeling that no one understood or believed him?

We tried everything, of course: physiotherapy; transcutaneous electrical nerve stimulation—or TENS—machines; acupuncture; wax baths; and icing. Icing was frequently recommended by clinicians and physiotherapists, but it is one of the worst things that can be done for someone suffering with CRPS. I am sure that we will hear that from other members.

Eventually, having waited for two years after his referral, Aidan saw a pain consultant, and was diagnosed on his first visit. Although his pain and challenges remained the same, the sense of relief and validation that he felt was overwhelming. Mirror box treatment with appropriate neurological treatment helped a little, but there is no cure or treatment for CRPS. We need more research into, and much more awareness of, the condition.

Aidan is in a relatively good place. He could not put in the practice to achieve his clarinet and bass clarinet goals and become a professional musician. Nonetheless, he won the music prize in sixth year, he has studied for a music degree, and he is now on his future pathway. That was despite being told by a guidance teacher after his standard grade results that he had been a disappointment and that he should have done much better and got all As. His dad and I were very proud of him. Unknown to the teacher—despite the condition being disclosed—I had had to sit up with him in tears at night, with him begging me to cut off his wrist and hand.

That might sound like a teenage drama until it is understood that, for CRPS sufferers, elective amputation is a common route. We first saw that reported in the news in 2019, when a promising Welsh athlete, Helena Stone, had her leg amputated at the age of 22 following a kayaking accident when she was 16. CRPS is usually, but not exclusively, triggered by an injury.

CRPS has always been in the news. Recently, it has been in the news because of the Netflix documentary “Take Care of Maya”. The title comes from the suicide note of Maya Kowalski’s mother, Beata, after she was accused by clinicians of Munchausen syndrome by proxy and her daughter was taken into care in the US. That is a tragedy in the true sense of the word, with a family losing a loved one in horrific circumstances. Indeed, a Florida court has just awarded the family damages of $261 million to the family against John Hopkins all children’s hospital in St Petersburg. The documentary has raised awareness and understanding of CRPS.

A number of charities, including CRPS UK and Burning Nights CRPS Support, provide support. Through Burning Nights, I met another pupil from Aidan’s school, Kiera McAdam, who is just a few years older than him, is also in a professional educational role and is a champion fundraiser for the charity. Her experiences of grappling with CRPS as a teenager and adult resonate with Aidan’s.

In 2022, Burning Nights held its annual conference in Scotland. I was delighted to attend with Aidan and know that it was a profound and inspirational experience for him to meet and talk to other young people coping with CRPS. I also met Victoria Abbott-Fleming in person; I had been working with her for a number of years and was honoured to be asked to open, and to speak at, the conference. Victoria was a successful barrister until a fall at work in 2003 triggered CRPS. During the time that she has had the condition, she has had both legs amputated above the knee, not through the type of elective surgery that I mentioned earlier but due to life-threatening, aggressive and extreme CRPS symptoms. You can read Victoria’s story on her founder’s page on the Burning Nights website.

Throughout November, which was CRPS awareness month, Burning Nights posted daily tweets informing people of the condition. The tweets are incredibly informative, and I urge anyone interested in learning more about the CRPS to look at them, and at the charity’s tweets in general.

I have just about managed to get through my speech without crying, but I have cried about CRPS in this place. At an event here in Parliament, I met a truly inspirational academic from the University of Glasgow, Dr Jennifer Corns, who came here with a brain—not the incredible one that she herself has but a plastic one. I know that many people will remember her from having their photograph taken with that brain in the garden lobby. She is an expert on chronic pain. When I mentioned Aidan’s diagnosis, her first question to me was, “Did he have an accident?” and I knew that she understood. There was no need for an explanation or for the same questions. I had met someone who understood what I had gone through—and I am just a parent, not a sufferer.

Today is about raising awareness. There is work to be done in general practice surgeries, in accident and emergency and in our schools to foster understanding and empathy. There is also a need for access to pain condition nurses and consultants, and waiting times, especially for young people, must be improved. Aidan, Kiera and Victoria, and all those across the globe living with CRPS day in, day out, are all heroes in my eyes. [Applause.]