Ray’s story

Ray Castell in his wheelchairBetween September 2012 and April 2013, a random sample of 50 people newly referred to the Oxford Health NHS Foundation Trust Physical Disability Physiotherapy Service with neurological long-term conditions in Oxfordshire were offered a one-off payment of £400 as a personal health budget to buy services to help them to exercise more regularly. Ray benefitted from this scheme, and for him the results were transformational.

Until ill health struck suddenly in August 2012, Ray Castell was leading a busy and active retirement. What began as a nagging back pain quickly turned into a crisis, as overnight he awoke with no feeling in his left leg, and he was rushed to hospital. Emergency surgery was necessary late the same day as Ray underwent a five hour operation that offered an alarming 30 percent chance of success. It was discovered that Ray had been suffering from myeloma, a bone marrow cancer that had unknowingly attacked and swelled one of his vertebrae and thus strangling his spinal cord. The vertebrae had to be removed and he needed a titanium cage inserted to protect his spinal cord and titanium rods pinned into his back to strengthen his spine.

Ray survived, but recovery has been a long, slow road, which benefitted from his remarkable determination and the unstinting support of his wife. A major operation was followed by complications such as a chest infection. However, Ray still remembers the day when after being left with no feeling from his chest downwards and weeks of immobility he was finally able to move one of his little toes, followed slowly by movement returning to his right leg then the left.

In addition to the physical recovery he needed to make after major surgery, Ray was also dealing with the gruelling treatment for the cancer – which included stem cell transplant. Before returning home, Ray spent some time in the Oxford Centre for Enablement. Five months after the back pain began, at the age of 68, Ray was finally back at home. At first he needed to use a wheelchair, but gradually against all odds he gained enough mobility to walk using sticks.

The physiotherapist who was visiting Ray at home brought up the subject of a personal health budget, at just the right moment. Before he became unwell Ray had been a keen cyclist and long distance walker, and while dealing with sudden illness and disability is difficult enough, not being able to participate in the activities he loved was a huge blow.

Ray was searching for ways to improve his mobility, and hearing that he’d been chosen to receive a one-off budget to help him get moving again was perfect timing. When you’re feeling limited it can be difficult to think differently so the conversations to develop a support plan were really helpful.  He talked through the options with his physiotherapist, and decided to use the money to join his local gym, with some money left over to cover taxi fares so that he wasn’t reliant on his wife for lifts.

The gym provided just the hope and encouragement he needed. Before long he was gaining strength and confidence, and he found that the design of the low level cycling machines at the gym were an inspiration. If he could use this stationary bike – then why couldn’t he find a similarly designed bike for riding outside? His physio had already suggested a trike as a more stable alternative to a traditional bicycle, but the upright versions available in shops didn’t work for him, so he looked into other possibilities.

He eventually settled on a recumbent tricycle which, now also fitted with electrical assistance, means Ray can get out and about safely in his beloved countryside using mainly traffic free routes. While the personal health budget didn’t pay for the trike, the opportunity of a gym membership had certainly given him the boost he needed, and a way forward to more freedom. Finally, being able to just take off and have some time to himself.

Now that he has his own trike, he’s able to do that again.

Ray discovered art after retiring, and that’s also had a massively positive impact on his wellbeing. Prior to his illness his interest was in stone carving, but this became too strenuous after his operation, so now he’s moved into sculpture using copper and his work has recently featured in a Tewkesbury art exhibition. Ray has also discovered blog writing and is even developing a website for disabled accessible cycle routes, which he hopes to release soon.

Ray’s confident that other people could be getting out and about with the right vehicle and the right information. While the personal health budget only paid for the gym membership, Ray believes the discussions around the budget opened up wider possibilities.

“It was support towards finding a new way of doing things and enjoying life.”

Find out more about disabled access cycle routes on Ray’s website: www.freeonwheels.org.uk