It was a ‘kick in the teeth’ for Sally Morton when she was told the NHS no longer funds the operation that would enable her three-year-old daughter to walk.
Sally, 31, from Beck Row, had thought Jasmine was on her way to having the selective dorsal rhizotomy (SDR) operation that would counter the effects of spastic diaplegic cerebral palsy, which gives her painful muscle spasms and means she cannot even place her feet flat on the floor.
Jasmine, whose dream is of being able to run with her twin sister Summer, had MRI scans and X-rays at West Suffolk Hospital and was referred to Bristol Hospital, one of five doing a trial of SDR. That meant Sally had to stay overnight in a Bristol hotel with Jasmine, for whom car travel is painful,
The family have also funded £3,000 of private physiotherapy which was also painful for Jasmine, who is so determined to walk that when asked in a family video ‘Are we going to help you walk?’ replies: “No, I’m going to do it all myself.”
But then Sally was told funding was no longer there and she needs to raise £30,000 to get it privately.
Sally said:“It was a kick in the teeth. That’s something everyone should have a right to, everyone has the right to walk and be free from pain.
“Why shouldn’t Jasmine have it done when there are people who are ill because they’re obese or through drugs and drink getting treatment?
“If they were cutting heart operations, we’d all hear about it, but this only affects a minority.”
The operation, which severs nerves causing the pain, would mean Jasmine would suffer less pain. Without it she will need a life of pain killers, physio and operations. The splints she has to wear every day will need to be constantly remade as she grows and the taxpayer is paying for an electric wheelchair for her and future care.
The longer she waits, the less effective the operation may be and Sally still hopes she can have it so she can walk when she starts school.
NHS England says the trial was to allow the treatment effectiveness watchdog NICE to assess SDR’ cost effectiveness.
An NHS England spokesperson said: “Current evidence is limited, but together with NICE we are exploring SDR further through our innovative evaluation programme which offers treatment to a limited number of patients who meet the clinical criteria.
“Not only does this enable these children to have potentially life-changing surgery, but it also provides a real opportunity to gather the vital evidence we need on the effectiveness of the procedure, for the benefit of our patients.”
But Sally said: “They do this operation every day in the USA, so they know the effectiveness.”
St Louis Children’s Hospital alone says it has done more than 3,000 SDR operations over 27 years.
Donate to Jasmine’s fund at https://crowdfunding.justgiving.com/sally-morton