Parents launch petition to help son with cerebral palsy walk
- Credit: Archant
The parents of a five-year-old boy with cerebral palsy have launched a petition to persuade NHS England to reverse its decision to cut funding for surgery that may help their son to walk.
Liam and Sam Smith, of Bramley Drive, in Offord D’Arcy, were featured in The Hunts Post two weeks ago and spoke of their disappointment that a national campaign calling on the government to reinstate funding had failed to gather the necessary 10,000 signatures and so will not be considered by health ministers. They learned in January that the procedure called Selective Dorsal Rhizotomy (SDR), which involves cutting the nerves in the spine that cause tightness in the legs – a dominant feature of cerebral palsy – will no longer be funded on the NHS.
However, the couple have decided to launch their own petition, which they hope will give their son Zachery, – and other children – the chance to walk unaided. The petition has been signed by 1,000 people in the first week, so the couple are hopeful of success this time.
“I have decided to start a new petition because I believe it is important to show people that funding for life changing operations is being cut on the NHS.
“Selective Dorsal Rhizotomy would give children and adults across the UK a chance to improve their mobility and furthermore their lives. This is very important to me as my son often asks me why he can’t walk or stand and it is just heartbreaking. The previous petition only managed to achieve 5,300 signatures in six months. I am hoping that the new one will reach the 10,000 needed to get a response from the government. Signing the petition is easy and only takes 30 seconds of your time.”
Daily care for Zachery involves him wearing splints, physiotherapy and he has botox injections in the muscles of his legs to prevent them tightening too much. Zachery can crawl and uses a walker in the house to get about, but his parents generally carry him to bed or to the bathroom, which will become difficult once he is older and heavier. Outside the house, Zachery uses a wheelchair.
The surgery, which is not without risk, is expensive and with physiotherapy and aftercare is likely to cost around £40,000.
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“It is risky as they have to operate on the nerves and it could cause some sensory loss or even damage to the bladder, but without it there is no chance that Zachery will ever walk unaided,” said Sam.
In July 2014, NHS England announced it was to fund specialist surgery for a number of children with cerebral palsy. A programme was launched to gather evidence on the effectiveness of the surgery. SDR is an extremely complex procedure and involves opening up the bones of the spine in the lower back to operate on the nerves, which could potentially help relieve spasticity.
NHS England has said it does not routinely fund SDR for cerebral palsy because, although it is a promising treatment, current evidence on its effectiveness is limited and the treatment programme it launched in 2014 was a pilot to ascertain results.
If you would like to sign the petition, go to: petition.parliament.uk/petitions/127708