The father of a disabled seven-year-old has claimed the NHS is ”stalling” his daughter’s progress.
Stewart Ramsay says he is running out of patience with the health board as he awaits a decision that will determine whether his daughter Brooke will be referred for an operation to help her walk.
Since the summer, the Carnoustie family have been at the centre of a fundraising campaign to help pay for a procedure known as selective dorsal rhizotomy (SDR). They have already made contact with Bristol-based specialist Dr Kristian Aquilina to discuss the youngster’s suitability.
Although the NHS has turned down an initial application for funding, Mr Ramsay sent in a formal appeal for Brooke to be assessed by the expert to gauge whether she could benefit from the surgery. He has now been told there is no system for ”out of area referral” on SDR, leaving his daughter in limbo.
”It is the same old thing in that we are still waiting for a decision from the NHS on when they are going to see us,” Mr Ramsay said. ”I feel we are being stalled and I don’t know why. There is just no need to do it.
”It seems ridiculous to me but that is what we are faced with. We have already spoken to Dr Aquilina in Bristol and he has seen some video footage of Brooke walking. We have spoken with Brooke’s consultants who have said she is an ideal candidate for this type of operation.
”I am just at a loss as to how they can’t just give us a decision either way and let us know.”
Around £42,000 has been raised for the Brooke’s Dream fund since it was launched, with family, friends, colleagues and members of the public in Angus all getting behind the drive. If funding can’t be secured, the bulk of the money will have to go on paying for the operation privately, leaving the family out of pocket when it comes to covering expensive aftercare treatments and therapies.
Stewart said: ”We are just short of £42,000 at the moment and the fundraising is going really well. The biggest thing, to me, is that within six months so many people, some of whom can ill afford to help us, have managed to get us to that total and, meanwhile, the NHS can’t even be straightforward. I feel like we are getting the runaround.
”It will eventually come to the stage where we can’t wait any longer and we will just have to refer ourselves privately to Bristol.”
The NHS first began to discuss Brooke’s application in August last year, around the same time as the Ramsays first made their fundraising efforts public.
NHS Tayside medical director Dr Andrew Russell said: ”We have deferred the decision to offer Brooke a referral for SDR while we carry out a review looking at the potential of developing a system of out of area referral for this procedure. We appreciate that the family feel they are in a difficult situation but we hope to continue to work with them so we can achieve the best possible clinical outcome for Brooke.”
Brooke would become the first Scottish child to have SDR in a UK hospital if the funding case is finally settled. The operation aims to remove the spasticity in her lower limbs caused by cerebral palsy.
It is the same operation twins Ayley and Chloe Hirsch also from Carnoustie have undergone in the US after a massive local fundraising effort to pay for the surgery and aftercare.