N&N offers new Parkinson's hope

MARK NICHOLLS A revolutionary new treatment for Parkinson's Disease - costing thousands of pounds and available to only a handful of patients in the UK - is being prescribed to transform the lives of two women from the region.


A revolutionary new treatment for Parkinson's Disease - costing thousands of pounds and available to only a handful of patients in the UK - is being prescribed to transform the lives of two women from the region.

For the past few years Anne Ellis and Susan Hogger-Chamberlain - both 53 and patients at the Norfolk and Norwich University Hospital - have spent longer periods in wheelchairs, suffering from the condition that left them increasingly trapped in their own bodies.

But a new method of administering medication has freed them from the agonising muscle spasms and uncontrollable movements that had dogged their lives.

The drug costs £30,000 a year for each patient and is only suitable for people with the more severe form of Parkinson's who have not responded to other treatments.

But within days of treatment beginning last week, Anne and Susan are now able to leave their wheelchairs behind and walk and move freely.

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Anne, who was diagnosed 11 years ago, said: “Over the past five years my condition has worsened. I get terrific cramps and searing pains but the new method of treatment has made an incredible difference. I can now move around better, it will enable me to get out of the house and I have got my quality of life back.”

The patients are using a treatment called Duodopa. It sees the tried and tested Parkinson's drug L-Dopa administered through a tube direct into their stomach rather than in tablet form. The women carry a pump in a bag around their waste which releases the drug in equal amounts throughout the day. If they feel a relapse, they have the option to give themselves a “boost” four times a day.

Mother-of-three Anne, from Repps, near Ludham, said: “Under normal circumstances you would not want a tube in your stomach but we have no choice. For me, instead of being rigid with pain, my limbs are now flexible.”

The symptoms of early Parkinson's disease can usually be well-controlled using medication in the form of tablets. However, in the later stages, it can be difficult to control all the patient's symptoms consistently throughout the day using standard tablets alone.

One reason is thought to be that the medicines get stuck in the stomach and are not passed onto the small bowel quickly enough for them to be absorbed into the body.

As a result patients often fluctuate between a state of good, almost normal mobility, interspersed with sometimes uncontrollable involuntary movements which can cause falls and injury, and disabling stiffness and tremor.

Their consultant neurologist Dr Paul Worth said: “This uses the old drug but in a new form in an extremely novel and clever package, that is why it is so expensive.

“With the potential of the drug and as it becomes more established and more people feel the benefits, the cost might come down and that will make it accessible to more people.”

Dr Worth applied to Norfolk Primary Care Trust - currently £42m in the red - to fund the drug on the grounds of exceptional need and despite the PCT struggling to offset the deficit the move was approved.

“We are delighted they accepted it and so far it seems to be doing a marvellous job. They are doing incredibly well,” he said.

The treatment has been used on about 60 patients in Sweden but in addition to the N&N patients, there are only seven others in this country who are benefiting.

The patients will need the treatment for the rest of their lives. They have a temporary tube in their stomach at the moment but both are due to have a permanent tube fitted tomorrow and are expected to go home on Friday .

Susan, from Oulton Broad, was diagnosed with Parkinson's when she was 32 and was becoming increasingly trapped in her own home and more isolated with her condition.

“It is almost too good to be true,” she said. “I cannot believe how much mobility I now have. The big difference is that now we will be able to plan our lives.”

Her husband Brian said: “The difference in her is amazing, not only physically but emotionally as well. It has been more dramatic than we expected.”

In the last few days, Anne and Susan walked down to the hospital shop together, which is something they could never have done before. Both hope to get out and about more and are grateful to the N&N for securing the life-changing treatment.

They hope it will pave the way for other Parkinson's Disease sufferers to receive the drug as the cost comes down.

Despite being £42m in debt, Norfolk PCT said it has agreed to fund the treatment on clinical need.

A spokesman said: “Whilst the PCT continues to work hard at managing and recovering from its large debt, putting the patient first has always been, and remains, its first priority. Decisions regarding the most effective treatment for individual patients are taken on clinical needs.”