Revealed: postcode lottery for dystonia treatment

Paul Kellow has a painful and debilitating condition called dystonia. The muscles in his head, back and neck twitch so violently he has trouble eating, he sleeps no longer than four hours a night, and he now rarely leaves his home in Leicestershire.

But Mr Kellow is a victim of a postcode lottery. His consultant, a world expert in Dystonia, has recommended deep brain stimulation (DBS). It is a procedure approved by the National Institute for Health and Clinical Excellence (NICE) and is supported by a number of international research papers showing that it can vastly improve many Dystonia cases.

But when Mr Kellow asked his local primary care trust, NHS Leicester, Leicestershire and Rutland, they turned him down. Channel 4 News has discovered that this is based on a policy that differs from almost anywhere else in England. If Mr Kellow had lived in Birmingham, Hull, Yorkshire, Humber, Essex – just to name a few – it is likely he would have had the procedure funded.

East Midlands: ‘Lack of robust evidence’

He has, however, the misfortune to live in the East Midlands which has the only policy (as far as we have been able to establish) of routinely refusing funding for DBS. The East Midlands specialised commissioning group, which is the local body responsible for developing policies on rarer conditions, says: “The use of DBS for non-Parkinson’s tremor, dystonia and pain disorders is not supported due to a lack of robust evidence.”

Sometimes I feel like just bursting out crying to be honest with you because I don’t know where to go, I’m just so tired all the time, because this shaking really does take it out of me. Paul Kellow

The east of England policy states that DBS can be funded if the patient meets certain criteria. The Hull policy says the same as does the Yorkshire and Humber specialised commissioning group.

The Dystonia Society says that DBS is an essential part of the treatment for dystonia. But, the society’s chief executive told us, all refusals that had come to him in the past year were from the East Midlands.

Mr Kellow has had three rejections for the funding. He said: “Sometimes I feel like just bursting out crying to be honest with you because I don’t know where to go, I’m just so tired all the time, because this shaking really does take it out of me.”

Grounds for rejection

The NHS funding system is highly complex but for specialised funding, it is referred to an individual funding panel. They make their own decisions but generally refer back to any policy developed by a specialised commissioning group.

We have seen the three rejections. They note the severity of the symptoms but have said:

January 20: The policy states that the use of DBS for Dystonia is not supported due to a lack of robust evidence and therefore the PCT cannot approve your request for your patient to receive this treatment.

April 3: The panel concluded that there was not sufficient evidence to demonstrate exceptional clinical circumstances. That is, the patient was not deemed to be significantly different from the group of patients with the same condition at the same stage and was not likely to gain significantly more clinical benefits than other in this group.

April 27: The screening panel therefore agreed that the definition of clinical exceptionality had not been proven and that this case will not be forwarded to the IFR panel for consideration.

Mr Kellow’s brother, Nigel, happens to be a consultant in pain medicine working in London. He has made a formal complaint to the PCT and has spoken to the public health doctor who heads the individual funding panel. He told Channel 4 News that he considered it ‘immoral’ that in a health service funding through general taxation patients can be refused treatments because they live on one side of an arbitrary boundary.

Leicestershire PCT said in a statement: “The PCT follows the East Midlands policy for Deep Brain Stimulation. The policy does not support routine funding for DBS for patients with dystonia and any consultant that wish to prescribe DBS need to request funding through the individual funding review process.

“In this case two previous applications had been turned down at the initial stage as insufficient clinical evidence was provided in support of the applications.”

Hope for future patients

None of the rejection letters state that further clinical evidence was needed. However, Mr Kellow has now unexpectedly been told that his case will be reviewed. The PCT said it was because further clinical evidence had been supplied.

Neither he nor his brother know what this might have been although Nigel Kellow did recently point out that his brother had lost a quarter of his body weight in the past two years because of the trouble he has eating.

There is hope, however, if not for Mr Kellow, at least for future patients. From next year the NHS commissioning board will be responsible for nationally commissioning specialised services and will develop national policies. The hope is that dystonia will be on the list and that they will follow the guidance from NICE and recommend funding when it is considered of clinical benefit.