A three-year-old girl has been denied an operation that could enable her to walk because of an NHS postcode lottery – despite the procedure only being available at her local hospital.
Little Evie Tucker suffers from cerebral palsy and can only shuffle a few steps at a time in her walking frame.
She will be unable to walk for life without a #25,000 operation which is only performed at one hospital in Britain – which happens to be just 12 miles away from her home.
But the procedure is not routinely funded by the NHS and bosses have ruled that Evie’s case is not strong enough to justify the cost.
Her family are now trying to raise cash to fund the four-hour operation themselves in a bid to help Evie walk before she reaches school next September.
Mum Karissa Skidmore, 28, who lives in Avonmouth, Bristol, with partner Dan Tucker, 31, their five-month-old son Jack and Evie, said she is the victim of a postcode lottery as health trusts elsewhere have provided funding.
She said: “This is a postcode lottery – they are saying the treatment is not available to other children but it is to those in other parts of the country.
“I understand that we are in tough times are they want to save money but you can’t put a cost on the worth of a child’s quality of life.
“Evie is great value for money, the effects of this operation will last for the rest of her life and without it she won’t ever be able to walk.
“I want Evie to have the surgery as close to her fourth birthday in March as possible as she is not at school yet and it will not interfere with that.
“It would make a huge difference to Evie if she could walk.
“I can see it in her face how frustrated she gets at not being able to join in with her friends walking and dancing and it will make a difference to all of us as a family.
“Without the surgery she will not be able to walk by herself.
“She has a walker, which she probably manager about ten steps with before she gets really tired so mainly she crawls around.”
Evie was delivered ten weeks early after Karissa suffered a fall and she spent the first seven weeks of her life in the neonatal intensive care unit.
Brain scans at Southmead Hospital in Bristol showed she had cerebral palsy.
Accounts worker Karissa said: “They said early on that judging by Evie’s brain damage she would not be able to walk, talk and might not be able to eat.
“But she does everything that every other three-year-old does, apart from being able to walk.”
The operation – called a selective dorsal rhizotomy – can be carried out on children aged four to 11 and involves cutting some of the nerve fibres between the muscles and spinal cord.
A neurosurgeon goes in through the back of the patient while they are under general anaesthetic and tests the nerves with electrical impulses.
Any nerves acting abnormally are then cut. Patients who have the operation require physiotherapy costing around #10,000 for several months afterwards.
The operation has been available at Frenchay Hospital in Bristol – just 12 miles away from Evie’s home – since last May.
Consultant neurosurgeon Kristian Aquilina (corr) has since performed the operation on 12 patients at the hospital and recommended it for Evie two years ago.
A further 14 children have been assessed by Mr Aquilina and had funding for the operation refused by their local NHS Trust.
NHS Bristol’s exceptional funding panel considered Evie’s request for the surgery but refused it in December last year.
A letter from the Trust read: “The panel agreed that there is a small but significant cohort of patients who may benefit from this new developing procedure and they had not been supplied with sufficient evidence to demonstrate that Miss Tucker has the potential to benefit over and above other patients with a similar condition for whom this treatment is also not currently available.”
A spokeswoman for the Trust added: “NHS Bristol is responsible for distributing services fairly across the whole of the population of Bristol, a position that means we have to make difficult decisions about funding.
“Unfortunately, the need for healthcare services usually exceeds the resources available. We cannot always provide NHS funding for all of the treatments that patients request.”
Evie’s family plan to appeal the initial decision but are now focusing on fundraising to pay for the treatment privately.
For more information please visit www.justgiving.com/evieswishtowalk.
