A Crosskeys family are trying to raise £65,000 to help their disabled daughter to walk
News | Gareth Hill | Published: 11:00, Tuesday July 29th, 2014.
The parents of a five-year-old girl who suffers from Cerebral Palsy need to raise up to £65,000 for a life-changing operation because they cannot get funding from the NHS.
Olivia Robinson, from Crosskeys, is completely reliant on her parents for mobility but they have been told Selective Dhorsal Rhizotomy (SDR) could enable her to walk.
The surgery is not available in Wales, and only at selective hospitals in England, and is not funded as a rule by the NHS.
Father Daniel Robinson is disappointed the NHS would not pay for her to go to Frenchay Hospital in Bristol for an initial observation.
A year-on she has been invited back for a full day assessment, costing over £2,000, that will decide whether she can have the treatment or not.
Mr Robson said the health board will not pay for the assessment.
He said: “The main thing for us is that she goes through the treatment, the benefit outweighs the risk.
“It’s a life changing operation that will save the NHS money in the future.
“It’s alarming when you see people having non life-changing cosmetic surgery on the NHS but they won’t pay for treatment that can help a little girl to walk.”
A Welsh Government spokesman said: “We fully appreciate the desire of families who have children with cerebral palsy to pursue treatment they feel could improve their child’s life.
“In common with the rest of the UK, SDR is not routinely commissioned by NHS Wales because there is a lack of clinical evidence at this time to support the treatment.
“However, Wales will be taking part in NHS England’s ‘commissioning through evaluation’ process to fully assess SDR’s effectiveness to inform its future use.
“This means funding will be made available for a small number of children in Wales to have the treatment.”
If UK doctors cannot carry out the surgery, the family will go to the US for treatment that could cost £65,000.
Olivia’s charity, Footsteps for Liv, has raised £25,000 and have been named Sainsbury’s Pontllanfraith charity of the year.
Mr Robson said: “We are really pleased to have been selected as Sainsburys Pontllanfraith charity of the year and look forward to working with the store over the next year and hope that this raises awareness of Olivia’s cause.”