Dystonia U-turn by NHS primary care trust
In May this year we reported on the case of Paul Kellow. Mr Kellow has dystonia, which is a painful and debilitating neurological condition. It made the muscles in his head, back and neck twitch so violently he had trouble eating, he couldn’t sleep longer than four hours a night and he had become virtually housebound.
Yet, his local primary care trust, NHS Leicester, Leicestershire and Rutland had repeatedly turned him down for a procedure called deep brain stimulation. All other treatments, including botox, had failed and his consultant said this was his only hope. We showed that unlike every other health authority in England, the east Midlands had a policy of not funding deep brain stimulation. They said there was no evidence that it worked.
This was despite it being recommended by the National Institute for Health and Clinical Excellence. Mr Kellow had become a victim of a postcode lottery. His misfortune, apart from the dystonia, was to live in the east Midlands.
But suddenly, the PCT had a change of heart. We do not know if it was our intervention, or that of Mr Kellow’s brother who is himself a doctor, or the work of the Dystonia Society. It doesn’t really matter now. What matters is that they fell into line with the rest of the country in this case.
And in October, Mr Kellow was admitted to the Royal Hospital for Neurology and Neurosurgery in Queen’s Square in London. We have now been back to see Mr Kellow and the change was unbelievable. The shaking has stopped, he has put on much-needed weight, he is able to walk more than a few steps and already he was planning a visit to the pub for the first time in more than a year.
Mr Kellow is remarkably sanguine about the failure of the PCT to initially fund the treatment. He is just so pleased to be feeling normal again.
And there is more. The Dystonia Society has now been sent a document by the National Commissioning Board. From next April they will make decisions on funding for rarer conditions (about 50 people a year in England have deep brain stimulation for dystonia) and they have put in a draft that there is evidence that the treatment works. The hope is now that nobody else will have to go through the fight Mr Kellow did.
You can follow @vsmacdonald on Twitter