Tuesday, 19 April 2011

Hope for cerebral palsy sufferers

Met a very nice lady on Saturday morning whilst out canvassing.  Ellie Thompsopn told me all about her campaign to deliver affordable Selective Dorsal Rhizotomy  (SDR) treatment to the UK.  SDR is a technique designed to improve walking and/or increase the range of motion and improve body positioning for cerebral palsy sufferers.

Ellie’s charity, HUGS, concentrates some of its efforts on raising funds to cover the substantial cost of putting a child through treatment.  Even so, sadly, the success rate in the UK is significantly lower than over in America where pioneer Dr T S Parks, using less invasive surgery, is able to enhance mobility in virtually all the patients he treats.
HUGS, along with other interested bodies, now want the UK to follow Dr Parks lead whilst at the same time securing financial support for patients and/or their families to cover the costs of treatment since NICE (National institute for Health & Clinical excellence) have said that there will be no NHS funding for this procedure.  The good news is that from May Dr Kristian Aquilina will be performing SDR surgery using Dr Parks’ techniques at the Frenchay Hospital in Bristol – but at an anticipated cost of £24,000 per patient.  Additionally only children over 6 years of age will be treated in the UK yet statistically Dr Parks has proven that the surgery is more successful the younger the child.
If anybody would like to know more about HUGS then please visit their website www.hugs-uk.com
and for further information on selective dorsal rhizotomy then visitwww.scope.org.uk/help-and-information/z-therapies/selective-dorsal-rhizotomy
Without making any political point, it is the responsibility of anybody representing the community to highlight issues such as these that affect the disadvantaged in society irrespective of the party umbrella that they work under.  Personally I do think that funding should be made available to help subsidise the cost of treatment at the very least and that the rules governing the minimum age of treatment be re-visited given Dr Parks’ research.

No comments:

Post a Comment