A family in England is devastated after the country’s publicly funded heath care system denied their 6-year-old a life-changing surgery that could help her walk.
The family of Shannon Bowley, who has cerebral palsy and whose mobility is limited to scooting around, received a letter from the United Kingdom’s National Health Services over the weekend saying the surgery they were looking forward to and had spent a year preparing for won’t be happening anymore.
Why? According to the Nottingham Post, funding for such a surgery was discontinued last year. NHS England told the newspaper it is looking at options to fund the surgery, which could include the family paying for it themselves. The family estimated that it could cost more than $11,500.
“I felt like I had been punched in the stomach when I opened the letter — I was crying and I was heartbroken,” Shannon’s grandmother and legal guardian Samantha Jones told the Post. “I couldn’t think straight, and I was just trying to phone the hospital. I didn’t know if it really meant she wasn’t getting the surgery.
“After signing the consent form I thought it was a done deal. I felt like the whole world had fallen through. Everything we had done was pointless,” Jones continued, referencing procedures that had been done to prepare for this surgery.
Watch Jones and Shannon talk about their hopes for the surgery before they knew it was canceled:
The Nottingham Post in an editorial called on the hospital to “reverse [the] decision which puts bureaucracy first”:
We do not comment on whether the procedure scheduled for Shannon, who has cerebral palsy, should be funded by the NHS (although the local medical opinion appears to say the treatment would be beneficial).
Our principal concern is the decision to abandon plans for the operation was communicated just seven days before surgery, when the youngster was prepared for it and hopeful of a positive, life-changing outcome.
NHS England has claimed funding for this type of operation was withdrawn last year. But Nottingham University Hospitals NHS Trust says it was not aware of the change and it was one of a blizzard of new policies that were implemented at the same time. NHS England needs to review how it communicates with hospitals and NUH must ensure it is up to date with funding arrangements.
Shannon wasn’t the only child to learn a surgery that could improve her life with cerebral palsy was canceled. Eight other children were told shortly ahead of surgeries they wouldn’t receive them and 10 who were waiting for a surgery date to be set might never get one.
One of these kids was 6-year-old Kyle Mckenzie, who wants to someday play football with his friends. He was supposed to have surgery this week.
“I was absolutely gutted — it was like the world had dropped out beneath me. It was beyond words and I would have expected a phone call not just a letter,” Audrey McKenzie, Kyle’s grandmother and legal guardian, told the Post. ”There’s no cure for cerebral palsy but it would have given him a better quality of life and he could have gone and played football with his friends.”
Dorsal rhizotomy surgery is helpful for patients with a spastic type of cerebral palsy, which causes muscles to over react. The surgery involves cutting some nerve fibers going into the spinal column, reducing the signals being sent to muscles and thus reduce spastic episodes.
According to United Cerebral Palsy, the surgery can improve a person’s ability to sit and walk and can result in better upper limb use.
“We apologize for the disappointment and distress caused by the cancellation of surgery at such short notice,” Dr. Stephen Fowlie, medical director for Nottingham University Hospitals, told the Post.
Neither Shannon nor Kyle’s family are giving up hope that they might someday receive the surgery.
(H/T: Daily Mail)