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 More good news on Duodopa ...
http://new.edp24.co.uk/content/news/...A28%3A17%3A783
"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.
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 waist 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."

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