Toby beats pain with help from Evelina London

Toby Mills in a physiotherapy room at Evelina London.

A boy who was confined to a wheelchair and unable to go to school due to excruciating chronic pain has beaten his pain and made a full recovery thanks to a programme at Evelina London.

Toby Mills aged 13 from Orpington, Kent, fell down the stairs and hurt his back in 2016. Toby was taken to his local emergency department (A&E) and had to visit hospital two further times when his pain became increasingly worse.

After being referred to the rheumatology and chronic pain service at Evelina London, Toby was diagnosed with a form of complex regional pain syndrome (CRPS), a condition that causes pain across the entire body. This meant he struggled to sleep, making the problem worse because tiredness and stress affects CRPS. Things became so bad that he missed most of his final year at primary school.

Toby’s mother Caroline Sandford-Mills said: “Toby was in a tremendous amount of pain. He was often unable to leave his bed for days at a time and could rarely make it out of the house.

“Everything he did made the pain worse, and this was a big strain on the whole family. Eventually I left my job so that I could care for him full time.”

Experts at Evelina London recommended the hospital’s Pain Management and Rehabilitation programme, known as the PRIME programme, to help treat and manage Toby’s condition. Dr Suzy Gray, lead clinical psychologist for chronic pain and rheumatology at Evelina London, said:

“Given how difficult it can be for children to deal with chronic and debilitating pain, the PRIME programme aims to help them take part in normal everyday activities, which often leads to an improvement in the pain itself.

“Our team of doctors, physiotherapists, psychologists and occupational therapists work together to create treatment plans that help children and young people get back to doing things that are important to them. We also work with their parents to help them better understand ways to help care for children suffering from chronic pain as this can bring its own challenges.”

Toby thrived on the PRIME programme and became close friends with other young people. Patients on the programme stay in hospital during the week and spend weekends at home, so Toby and his family had an opportunity to try his new pain management techniques in a home setting. After completing the programme and having follow-up reviews, Toby was fully discharged in November 2017.

Caroline said: “The PRIME programme has been life changing for the whole family, and Toby has done brilliantly well. He has recently started back at his secondary school, and has come top in a national UK maths challenge! I’ve also been able to go back to work full-time.

“I knew we had turned the corner when, just like all the other children at Evelina London, he went down the big slide inside the hospital in the second week of the programme. It brought home just how far he had come, and how great it was that he could once again enjoy life like any other happy and healthy boy his age. We are all incredibly proud of him.”

Toby said: “The team at Evelina London was brilliant and helped me overcome the pain from my fall. I’m really happy to be back at school, and can now go back to playing rugby which is something I love to do.”

Find out more about rheumatology and chronic pain services at Evelina London.