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It has been recently highlighted in the press that some UK children with cerebral palsy are not offered pioneering spinal surgery at home and have been forced to seek help in the USA.
The Telegraph newspaper reported in July 2013 of the case of Kyle Weaver, a 3 year old from Colwyn Bay. In May of this year Kyle had spinal surgery in the USA to assist with his mobility and free him of debilitating pain. The report highlighted that the standard care in the UK is to relieve contractures in limbs through botox injections or the use of a baclofen pump, however these drugs are short lasting and can have side effects. Kyle’s family wanted a better option for Kyle and sought surgery known as selective dorsal rhizotomy (SDR). However funding for UK surgery was not given by the NHS as he was considered too young.
SDR is an established treatment for those who have a pattern of stiffness with cerebral palsy known as spastic diplegia, predominately involving the thighs, legs and feet. SDR is surgery to divide the nerve roots which contribute most to the spasticity in an effort to relieve a child of the pain and discomfort of contractures and hopefully enable greater mobility. In the UK children between the ages of 4-11 years of age with a diagnosis of spastic diplegia should be considered for surgery, although some children will not be considered suitable to undergo the surgery. Even after surgery an intensive period of physiotherapy will be required in order to build muscle strength and tone.
The National Institute for Health and Care Excellence (NICE) have issued guidance on the suitability of children for this treatment and have sought further research into the long-term outcomes including any potential complications, but also relating to assessments of disability, social inclusion and quality of life.
In Kyle’s case he was not approved for NHS surgery so his parents raised funds through charitable events and generous donations to send their son to America for treatment. Kyle has enjoyed a great result following his treatment and can now walk with sticks and hopefully will proceed to walk unaided and is pain free. The report highlighted the other benefits of this treatment stating: “Children with CP often use all their energy on mobility, and overcoming pain, so they can’t spare any resources for areas of development such as language, Post-operatively, this can be one of the most exciting areas of improvement.”
Kyle is of course not an isolated case and there has also been campaigning in the south west of England by the ‘Help us Walk’ campaign. The families in this group are seeking funding from NHS Swindon for the expensive Selective Dorsal Rhizotomy surgery, but in the meantime are raising funds privately for the surgery to be undertaken abroad.
At the clinical negligence team we represent many families who have brought forward a cerebral palsy claim by suing the NHS for having caused their child to suffer a brain injury. A large number of parents find the use of the baclofen pump distressing with limited results and wish for a solution which is likely to produce real results for their child, permanently. Contractures are know to be particularly painful and even if the goal of unassisted walking isn’t reached, the fact that parents’ know their child is pain free brings much comfort in itself. This surgery is estimated to cost £50,000, which in the longer term, if considered of benefit, appears to be a good investment of NHS funding.
If you have concerns about these issues please contact a cerebral palsy solicitor for further advice and guidance.