Published on 3 Jan 2013

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.

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7 reader comments

  1. Lianne Morgan says:

    I have voice dystonia and have first hand knowledge of how awful I have been treated by many doctors and consultants. There us not enough awareness within the NHS of this condition. It is an awful disease and so often put down to (in the head) if you know anyone with dystonia you will know how crazy that sounds.

    It really is a great thing that they now recognise that DBS is the only way for some patients.

    I myself continue my battle against it, but thankfully I have found a brilliant consultant and speech therapist but every day is tiring, and still it is unbelievable how many people treat you like an idiot., because of it.

  2. Gary says:

    I have Idiopathic Familial Dystonia-Parkinsonism that started in Laryngeal Dysphonia, and has progressed from head-to-toe. DBS helps many temporarily with mild forms of Dystonia, but it is unfair to claim this as a cure. The batteries require replacement frequently, and if you have Hydrocephalus this would not be recommended, so I take 32 pills everyday.

    I am not a candidate for this, as I have an extremely rare case. I know many that find this works, and others that have endured a nightmare with DBS. It is a costly maintenance and runs a risk of infection, rejection, or other dangerous issues that must be taken in consideration/

    1. Nigel Kellow says:

      You have such a negative view. It has never been claimed to be a cure, but it can be highly effective at controlling symptoms. In my brother’s case his symptoms now are no more than 1/10th of what they were before the implant. Admittedly he has had a fantastic result, but the results are steadily getting better with improvements in devices and patient selection.
      Of course there is a risk of infection, as there is whenever anything is implanted in the body, but this is around 1%. And of course the batteries wear out, but they do last around 5 years and can easily be replaced. In that respect it’s no different from a pacemaker, and there are hundreds of thousands of people around the world who’ve had one of them for many years.
      The medical teams are fully aware of all the implications and on-going commitment, and I’m sorry your medical team haven’t been able to get on top of your dystonia.

      1. Paula Hall says:

        Dear Mr Kellow

        Please could you advise how your brother is now another year down the line?
        My husband has been offered DBS on August 18th 2014. His symptons are very similar to your brother, only he has dystonia & tremor so they are doubling the operation using 4 electrodes & maybe 2 brain pacemakers. We are delighted to have the opportunity of some hope with this terrible disease as botox has plateaud, he is in alot of pain & gets no peace as it is worse when he is at rest.
        Is there anything your brother would advise to do differently before we go ahead. We often think of him & couldnt believe before & after pics . We were so happy for him.
        Any advice would be much apreciated.
        Kind regards

  3. londoner says:

    Lianne, I am so sorry to hear what you are going through, but it is no surprise to me. Whether private or NHS, the awareness of so-called professionals to anything but the most basic neurologic conditions is shockingly inept and unprofessional. When it comes to neurology, there is a physician-centered, not a patient-centered culture. Patients who know their history, symptoms and the sequence of progression of those symptoms? Patients who observe themselves contextually? Patients who expect to be listened to? Patients who know that any successful treatment depends on the empowerment of the patient as an equal member of the team – with the only first-hand expertise of their own symptoms and conditions… Intelligent, active patients are simply an annoyance to the neurologist whose primary agenda is shuffling through the day to get home. Behaviour toward patients is arrogant, shameful and should be examined – certainly with more care than too many patients are given. .

  4. Cheryl Pinder says:

    I also have Dystonia, Ormandibular, this affects my mouth, jaws, lips, unable to communicate properly, unable to eat properly, my neck is constantly turned to the left and my chin on my shoulder. The pain every day is indescribable, I too am thinking of having DBS, awaiting appointments etc. I have met up with the head of the DBS Team in The National Neurological Hospital in Queens Square, he said that DBS may help, I think we all know that’s it’s not a cure, but even if it helps 50% then it’s worth it, I desperately want to try and improve my quality of life, only 60 years young, hope to have many more years of living to do yet.
    I have spoken to 2 people who have had DBS, changed their lives, albeit a different type of Dystonia than mine, that’s the trouble with this condition, it affects people in different ways. I know there are risks, but as with any operation you take a risk.

  5. Ruth T says:

    I had drug-induced dystonia which affected my jaw and tongue for over 2 years and I got pushed from doctor to doctor until finally I had an attack in front of my GP who recognised it for what it was and gave me an injection which immediately counter-acted the phenothiazines that were causing this very painful condition (I completely understand Cheryl’s indescribable pain but at least mine went away immediately with the injection).

    Over the years, occasionally i’ve been given medication that, when I have taken it, if my tongue starts first to ‘shiver’ – I know then to stop it immediately before it all gets a whole lot worse.

    My GP at the time also told me to never have morphine in hospital if I’m offered it. And he gave me the names of some other medications to avoid, e.g. for nausea or anxiety.

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