A FRUSTRATED couple are willing to re-mortgage their home to pay for their daughter's spinal surgery in the USA after the NHS said a planned operation could not go ahead here because of an administration problem.
Sporty 14-year-old Ella Tomlinson, a year-nine pupil at Hereford Cathedral School, developed scoliosis of the spine around 18 months ago and is in the medium to serious stage of the condition.
A traditional, irreversible operation involving steel rods is available but would likely put an end to her sporting days while requiring huge amounts of after-care.
However, her parents discovered a procedure called Vertebrae Tethering (VBT) – which had been perfected in the USA and brought to the UK by a London consultant – which she was due to have before Christmas.
But just over two weeks ago, the family received the devastating news that the NHS funding had been withdrawn for the VBT operation – mainly because it has not been assigned a specific code within the NHS and was being carried out under the same code as the alternative operation.
Ella’s dad, Steve Tomlinson, said: "We were absolutely devastated because the consultant explained that NHS England have now said that there needs to be a specific surgery code for this operation.
"The consultant has to go through the correct procedures to first of all get this code and then be able to get the funding to be able to reinstate it.
“The initial estimate was nine months but it could just go on and on. Of course the problem we have got is that you can only have the surgery as long as you have not stopped growing and while your spine is still flexible so the clock is against us.
"The cost of the two different operations cannot be dissimilar but the cost to the NHS of follow-up treatment and care is, without doubt, far more expensive with the steel rod choice. Surely this is a very short-sighted decision given the evidence."
The steel rod operation would require a minimum of two weeks in hospital, three months off school, 12 months to fully recover plus the need to learn to re-gain balance, particularly to be able to walk up and down stairs again. There would also be hospital visits, physiotherapy and a lot of post-op care which would mean long periods of Ella’s life lost through this condition.
Ella, who is training with the county hockey and netball teams, would be due to start studying for her GCSEs next September and the steel rod operation would likely impact this.
VBT, however, would require a maximum of a week in hospital and medics say would require a six-week recovery.
The main benefit is that Ella, who dreams of one day being a microbiologist, would retain full forward movement, could continue with her sport, and there would be minimal follow-up treatment.
Amanda Tomlinson, Ella's mum, said: “She just wants to be a normal 14-year-old girl doing normal things.”
“Our options now are – and there is no choice, it has to be unless something miraculous happens – it has to be America but we are talking a lot of money,” Mr Tomlinson said.
The surgery and hospital stay would cost around £160,000 but flights and accommodation would be on top of that.
“It’s our daughter," said Mr Tomlinson. "She’s got her whole life in front of her. If we have to go into debt to be able to afford to send her to America that’s what we will do. But we shouldn’t have to.
"If it’s only a code that is stopping it and that has to be allocated then that’s just beyond belief really.”
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