TOT RAPS NHS POSTCODE LOTTERY If we lived 35 miles away my boy could get leg op enabling him to walk
specialists. “There’s no time to waste,” she said. “He can join a waiting list next month when he turns two so we’re desperate to make it happen.”
But she added: “We’re not thinking of this as a miracle cure. The physio afterwards will still be gruelling for Awstin but it will avoid a lifetime of hideous procedures.
“Awstin’s legs do not straighten and doctors have warned this is already putting pressure on his knees.
“If this goes on, he is likely need to have his legs broken and casted in childhood to strengthen them and his muscles cut and stretched. He’ll be in a wheelchair and forced to take months off of school at a time.”
Clare hopes her boy will attend a mainstream school but fears he may deteriorate before then. Last month, she and Richard set up a crowdfunding page that has so far raised just under £800 towards his treatment.
She hopes to raise the entire £50,000 to cover Awstin’s consultations, a year of physio prior to the op, the surgery itself and aftercare.
Both Bristol University Hospital and Great Ormond Street in London are prepared to perform the op privately. Clare added: “It’s a huge sum and we’ve a long way to go but we’re determined not to let this unfair decision deny our boy an active future.”
“We are so close to a lifeline yet still so far. It’s infuriating. If I moved over the bridge it would be a different story but our lives are here so we can’t. Besides, we simply shouldn’t have to.”
NHS England commissioned SDR treatment in July following trials.
Patients can receive it provided they meet certain criteria, with a decision on whether funding will be wheeled out across the board to be announced later this year.
In Wales, the NHS offers funding in a small number of cases but Clare claims she was quoted £2,500 for an initial consultation to decide whether Awstin would be eligible and was warned funding opportunities were “extremely rare”.
A Welsh Government spokesman said: “NHS Wales and England have commissioned SDR treatment as part of a trial to evaluate its effectiveness. The full findings are expected by the end of this year. This evidence will be used to consider whether the procedure should be routinely available on the NHS in Wales. “Where treatments such as SDR are not routinely available within NHS Wales, a clinician may submit a request for the treatment to be funded to an Individual Patient Funding Request panel in the appropriate health board.”