Read about our pioneering study with South Tees NHS Foundation Trust here.

Participant Spotlight: Alyson

Surgery Hero
October 9, 2023

Alyson is 58 years old and joined the Surgery Hero programme while awaiting a reverse shoulder replacement. She’s now had the operation and is on the road to recovery. Alyson is no stranger to the operating room, but in this interview, she tells us how working with her coach changed her perspective on managing her own health and helped her to feel in control.

Can you tell us a bit about your health journey?

I was born with a rare condition called Beals Syndrome, but it wasn’t actually diagnosed until 13 years ago. It’s a connective tissue disease, which means that all my muscles and my tendons are too short for my body and they snap very easily and are very difficult to repair.

I’ve had issues with my shoulders for years and multiple operations, but the muscles always snapped again right away. Because of that, I had to have a procedure called a reverse shoulder replacement, as the rotator cuff muscles were too badly damaged for the standard operation.

So far the operation seems to have gone well. I’m now in the process of building up the muscles around the shoulder to get some movement back, but it has to be taken very slowly. It could be up to 18 months before I know if it’s been successful or not.

What made you choose to participate in the programme?

I’m a great believer in doing what I can to pass it forward. I used to go to medical schools to help with exams because my condition is so rare and I knew it would help the medical students to learn.

When I read about the Surgery Hero programme, I thought the concept of it was brilliant. And I thought if I participated it would help the programme progress to help the next set of people coming through.

How has your approach to managing your health changed since participating in the programme?

I can recall one specific moment. It was after the operation, my appetite was completely gone and I had lost some weight.

I was giving myself a hard time and I wasn’t sure how to handle the situation. But my coach just stopped me and said, “what would you advise a friend in your position?”. Being asked that question was like a lightbulb moment and my entire perspective changed.

That was the point that I changed my view on how to handle my health issues both then and moving forward. I realised I was in control — it was just amazing.

If it wasn’t for my coach I don’t know where I would have been at that stage. In my opinion, working with her made my recovery so much smoother and so much more manageable.

What did you like most about the Surgery Hero programme?

I looked at the programme as my security blanket.

Although my coach wasn’t with me at all times, she was always there at the touch of a button on my phone. I could message her at any time knowing she would get back to me.

Using the app also kept me on track. For example, tracking my sleep made me realise how bad my sleep was and therefore I had to change that. So, I spoke to my coach about improving my sleep and she was able to help with that too.

What advice would you give to someone thinking about taking part in the Surgery Hero programme?

Do it! I would recommend it 100%.

This was my 20th surgery, and I don’t think I’ve ever felt quite so relaxed before and after. And that’s down to the support I received from my coach.

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