Letters

Last year, a mother with two young children wrote to me with a problem that politicians have the power to change. She has multiple sclerosis.

There is a drug - beta interferon - that can help her condition. Without treatment, she could expect her disease to progress unchecked until she is too disabled to support her children. According to a recently leaked report from a government memo, this treatment will be withdrawn from the NHS.

The government's decision on whether its withdrawal is acceptable for the 85,000 people in this country with MS will no doubt soon be made public. More often than not MS strikes at breadwinners, making them dependent on carers for the simplest tasks in their day-to-day life. Commonly, when one partner gives up work due to the disease, the other must also give up their job to care for them.

When beta interferon was first made available in 1995, people with MS and their families looked forward to a brighter future. It was never a cure, but it was and is the only drug that has been clinically proven to treat MS. The reality instead has been 'postcode prescribing'. Some people have received the drug, many haven't.

Overall, just two people in every 100 MS patients are receiving beta interferon today. This is less than anywhere else in the developed world. Now it seems the government's response is likely to make access to beta interferon even more restricted.

The reason for this scandal is that the clinical benefits of beta interferon are not thought sufficient to justify its cost. This is the provisional view of the National Institute for Clinical Excellence. MS sufferers are understandably aghast at this decision. Never did they imagine that NICE's answer to the injustice of postcode prescribing would be to deny beta interferon to any new sufferers whatsoever.

(Those already receiving beta interferon would continue to receive treatment. ) The effect of NICE's decision would be simply to set in stone the boundary between the 'haves' and 'have-nots'.

Such an outcome is hardly surprising for a body that puts more weight on opinions of health economists than patients. NICE has refused to hear directly from people living with MS, who are the best placed to assess the value of treatment on their quality of life.

Instead, it has been told by the government to consider 'the appropriate use of available resources' - in other words, whether the NHS can 'afford' beta interferon.

What my constituent and the other 85,000 MS sufferers need is a well-planned and properly delivered service. As part of that service, beta interferon should be available to patients whose experienced doctors believe they can benefit from it.

Treatment with drugs and services such as physiotherapy should go hand in hand. It is quite wrong to play one off against the other.

Patients with this terrible disease need both.

Nor is it the case that beta interferon is not 'cost-effective'.

Recently published evidence has shown that, in the long run, it is actually cheaper to provide beta interferon than to pay for all the long-term care that a patient disabled with MS will need. So NICE's decision doesn't just look like a betrayal of those living with MS, but bad economics as well.

In July, the prime minister unveiled his 'national plan' for the NHS. NICE also met to make its decision whether beta interferon should or should not be available on the NHS - the decision we long await. To Mr Blair I say this: making beta interferon available to those who need it won't cut any waiting lists. It won't grab any headlines. It won't even cure the disease.

What it will do is make a very real difference to the quality of life of people living with MS and their children. Surely, that is what the NHS is for? The prime minister may be surprised at the public mood of the moment on this and other issues. If this decision stands, he cannot be surprised if MS sufferers and their families feel abandoned by his 'modern' NHS.

Paul Burstow, MP Sutton and Cheam House of Commons