12:00 - 09 July 2002
Multiple sclerosis sufferers in Notts are still being denied beta interferon - despite the Government announcing five months ago that up to 10,000 people would receive the drug.
The Department of Health said the treatment would be available on the NHS from May 6.
But no sufferers in the county have yet received the drug.
And the department has told the Post it is unable to give a time-scale for when patients will receive it.
There are concerns that, for some patients, their condition will have deteriorated so much they will no longer be eligible.
Roger Long, chairman of the Notts branch of the Multiple Sclerosis Society, said: "It is very uncertain what is happening. Sufferers who are eligible for it just want to know when they can receive it."
The Post reported in February that extensive trials would be carried out involving around 10,000 sufferers.
The Government offered the trial as a hope to sufferers, because the National Institute for Clinical Excellence said the estimated £10,000 cost of the drug was too much for the NHS.
As an alternative, Primary Care Trusts and health authorities will now pay for the drug, and get a seven per cent budget increase.
Drug companies involved in the scheme will pay for specialist nurses needed to carry out the 10,000 assessments on behalf of the Primary Care Trusts and health authorities.
There are around 330 Notts patients suffering from multiple sclerosis who could benefit from the drug - which in clinical trials has proven to reduce the number and severity of relapses.
Department of Health spokesman Darren Aldrich said: "It will take a little longer before we know exactly how many patients can receive the drug."
Assessments will be carried out in order of when people were first diagnosed.
A spokeswoman representing Primary Care Trusts in Notts said:
"The Queen's Medical Centre does not, as yet, have sufficient specialist staff in order to start the assessment process, although it is expected they will have by October or November.
"Once the specialist services commences, patients will be called forward for assessment."
Fears over drug delays
Sufferers of multiple sclerosis are worried that the process to receive drugs takes so long their condition can worsen to the point that they may become ineligible for treatment.
Multiple sclerosis sufferer Dot Sutton, 52, a former St John Ambulance volunteer of Barlow Drive South, Awsworth, took beta interferon as part of clinical trials for five years.
But it was denied to her after the trial because the former Nottingham Health Authority did not prescribe the drug on the NHS.
She believes she is now eligible to take part in the Government's £50m trial and is awaiting an assessment.
She said: "People want to know when they are going to get the drug - and how much longer they will have to wait.
"It's disheartening that we know we could have the drug but we have to keep waiting.
"After we have the assessment then what? How much longer will we have to wait?
"I really don't want it to get to the situation where people who were eligible at the beginning are eventually denied the drug because they had advanced too much before the assessment."
While on the clinical trials Mrs Sutton said she felt much better -
she was not as tired as she had previously been.
© 2002, Northcliffe Electronic Publishing