More MS news articles for Aug 2001

'Beta interferon is my last hope'

http://news.bbc.co.uk/hi/english/health/newsid_1476000/1476002.stm

Monday, 6 August, 2001, 13:47 GMT 14:47 UK

It is likely that the National Institute for Clinical Excellence is to recommend the multiple sclerosis drug beta interferon should not be widely available on the NHS.

Studies show it can slow the progress of the disease and improve quality of life, but whether patients can have it depends on their health authority.

Here BBC News Online talks to Michelle Rudd, whose doctors say she would benefit from beta interferon, but whose health authority will not fund her treatment.

Michelle, who has suffered from multiple sclerosis, MS, since 1992 feels beta interferon is her only hope.

But the NHS says no.

Michelle, from Stourport-on-Severn, Worcestershire, said: "I can't possibly accept this decision. This disease is ultimately fatal. It's as if you're denying someone with cancer chemotherapy."

Michelle first noticed something was wrong in 1992. Driving to work, she suddenly lost the sight in her right eye.

Doctors finally diagnosed the cause as an early symptom of MS.

Michelle, a nurse, had no further symptoms for seven years, then while at work, she developed a paralysis down one side of her face, her leg and her arm.

The effects were not permanent, but since then she has suffered a relapse of her MS every five to six months.

"In the last two years, I've gone from blurred sight in one eye to walking with a crutch or a stick, further loss of sight and my right arm has been affected," she said.

She also has to catheterise herself so she can empty her bladder, and already, she sometimes has to rely on a wheelchair to travel long distances.

Michelle, 36, works as a nurse practitioner in a Kidderminster GP's surgery, but often has to have time off because of her MS.

Family life affected

She said her MS makes it difficult to be the kind of Mum she wants to be to her children Jonathan, 11 and Eleanor, six.

"Sometimes I don't look like Mum, and don't sound like Mum because sometimes I sound like I've been on the gin."

"We can't be spontaneous. I can't just decide to take the children to the park, or swimming. I have to have a sleep before and a sleep afterward."

Her husband Alec has to "do all the active things" with the children while she sits back and watches.

Hope

When she heard about beta interferon, Michelle thought she'd found something that could help her, and doctors at the Queen Elizabeth Hospital in Birmingham agreed.

She had the right kind of MS - "relapsing and remitting", and she fulfilled the criteria of being able to walk 100m without a stick.

"The neurologist said I was eligible for it but he couldn't give it to me because my health authority, Worcestershire, only paid for five people to have it."

Health authorities across the country have differing policies, with some funding all beta interferon treatment and others none.

Michelle said beta interferon was the "best thing there was" for MS sufferers, and there was nothing else.

"How can we quantify human life in terms of money?"

And she says she cannot wait for the decision of the National Institute for Clinical Excellence on whether people in her situation can have the drug: "I'm going to shout as loudly as I can in every available medium".

She is even considering taking legal action, perhaps using the Human Rights Act to argue to her right to life.