All About Multiple Sclerosis

More MS news articles for February 2003

Mother's Despair at Drug Delays

12:00 - 21 February 2003
Gayle Graham

Kate Eggleston is one of thousands of people in the UK waiting for the new multiple sclerosis "wonder drug". A shortage of specialist consultants has caused a backlog in its prescriptions.

When four-year-old Holly cut her finger and was crying, it wasn't her mother who kissed it better and put a plaster on. It was her elder sister, Charlotte, who is seven.

Their mum, Kate Eggleston, can't see - and has to rely on her daughters for many everyday tasks.

From having full sight about a year ago, the 31-year-old has slowly lost her ability to read, make shapes out, see colours and watch her children properly.

The deterioration of her eyesight has been caused by multiple sclerosis, an incurable condition which was diagnosed four years ago.

What started with numbness in her face spread to vertigo - she couldn't even get out bed.

At the time, Mrs Eggleston, from Long Bennington, Newark, had daughters of six months and three to cope with.

She had given up work as a shop assistant to look after her children, but this valuable time was being taken from her as she became more and more ill.

She was referred to a neurologist at the Queen's Medical Centre, where she was told she had multiple sclerosis.

She said: "I was absolutely scared.

"I didn't really know what it was. I thought I was going to die.

"I was 27 and I had multiple sclerosis.

"The doctors told me there was no cure and I was in a daze."

Over the past few years, Mrs Eggleston's eyesight has slowly begun to deteriorate - a symptom of her condition.

She said: "It started out like I was looking through the lens of a camera.

"Certain things would be in focus, but everything else would be blurred, as if it was out of focus.

"But over the past year it's really deteriorated to the point I now can't read.

"It makes things very difficult me, and it frustrates me as a mum.

"I can't help Charlotte with her reading homework, because she can read the letters better than me.

"I can't even take them out to the park, or on a walk as we live in the middle of nowhere and I can't cross the road without someone else there to check the traffic's clear.

"That's a huge responsibility for a seven-year-old and it's not fair to put Charlotte under that type of pressure.

"And if one of them hurts themselves, I can't see how bad it is.

"Charlotte understands I can't see and is really good, but she is only a child."

Mrs Eggleston's hopes of recovery are pinned on being given a drug which can slow down the progress of multiple sclerosis.

In 2000, she was told she would be eligible for beta interferon, a new 'wonder' drug that had been reported as being able to slow down the deterioration process and delay inevitable symptoms.

At the time, it had still not been approved for use on the NHS and the only patients being given the drug were on random trials.

Hope came in February last year when the National Institute for Clinical Excellence said that it would approve use of the drug in a trial of 10,000 sufferers.

It would be offered to certain patients who underwent hospital assessment and had the relapse form of the condition, such as Mrs Eggleston.

But, a year later many sufferers have still not been seen by doctors at the Queen's Medical Centre.

Problems arose after the Government failed to recruit as many consultants as were needed.

Nottingham only started assessing patients last November and Mrs Eggleston is still waiting for an appointment.

She is one of a 1,000 people caught in a backlog at the hospital - a regional centre which has just one consultant assessing all 1,500 patients in the Trent region.

Although her consultant has told her she could be helped by the drug, he cannot prescribe it himself - the government says only patients seen by specialist neurologists at a dedicated assessment centre will get beta interferon on the NHS.

Mrs Eggleston said: "I am annoyed I am still waiting on a list.

"My symptoms may not have progressed as rapidly if I'd been offered it sooner."

Her father, John Morris, is helping as much as he can.

He said: "She has been through a lot, and there's a lot more she'll have to face.

"She is incredibly strong-willed and never lets it get her down.

"It's been hard watching her illness change, but I think she's coped amazingly, considering she is a young mother.

"Her being almost blind is hard for her to cope with.

"Holly suffered a paper cut the other day, and Charlotte had to put a plaster on her because Kate couldn't see where exactly the cut was.

"I can see that it frustrates her, and that's upsetting."

Dot Sutton, of Barlow Drive South, Awsworth, is also waiting for her assessment appointment to come through in the next four or five weeks.

She took beta interferon as part of clinical trials for five years, and now hopes to receive it permanently on the NHS.

She said: "I know my symptoms have deteriorated since I stopped taking it , but I can't afford to pay for it myself.

"I am now in a wheelchair and before I could walk quite well.

"I understand that beta interferon is not a miracle drug as it only alleviates symptoms and delays their onset.

"It doesn't cure people and, while it's helped me on the trial, I understand that I have to wait in a queue for it.

"It has taken a while to get to this stage, but I understand it's on a first come first served basis.

"The hospital is having to see a large number of patients.

"A few of my friends are awaiting their assessments, too, and it is comfortable knowing if we are eligible for it we would be receiving it about the same time."

Another sufferer, Mary Pearson, of Trowell Grove, Long Eaton, has suffered from multiple sclerosis for almost nine years.

She paid for the drug herself for three years and now receives it as part of the clinical trials.

She said: "Beta interferon has helped alleviate my symptoms.

"Because I paid for it myself I got it as soon as the clinical trials started and I didn't have to go through the assessments.

"My quality of life is so much better. I can walk a little and I have a little more control over my life.

"The drug reduces the chance of your body catching a virus, which can lead to a relapse.

"For every relapse you have, another disability sets in.

"I am just concerned that with around 1,000 patients still waiting to be seen, when people need reassessments after a year on the trial, the queues will still be as long.

"This has been an ongoing problem since beta interferon was first trialled in 1995.

"It is just a shame that almost a decade since the drug was first available, people are no better off, and many are worse.

"It appears to be an uphill struggle for many sufferers.

"For me, the drug has helped, and for others it has helped people to remain mobile longer than they otherwise would.

"It should have been available for all for many years now."

© 2003, Northcliffe Electronic Publishing Ltd