More MS news articles for Dec 2001

Secret letter reveals ban on MS drug

Dec 23, 2001
The Herald (United Kingdom)

Patients in the west of Scotland are being denied an assessment to tell them if they would benefit from taking beta interferon, the controversial drug for multiple sclerosis.

South Glasgow University Hospitals NHS Trust has decided that it will not examine any more patients for suitability for the drug, which is available to MS sufferers in other regions of Scotland.

The Institute of Neurological Sciences at the Southern General Hospital in Glasgow treats multiple sclerosis suffers from across the West of Scotland but the decision to no longer tell them whether the drug could help has only come to light because a letter revealing the policy was sent to a patient by mistake.

The hospital's letter, which was addressed to Dr Harry Burns, Director of Public Health at Greater Glasgow Health Board, states: ''We have now indicated to all west of Scotland Health Boards that assessment for suitability will only be conducted when funding is identified. I suspect that this will, in part, be determined by the final recommendation from Nice (the National Institute for Clinical Excellence).''

The National Institute for Clinical Excellence, the government body which decides which drugs should be available on the NHS, is due to make its decision in January. The body which assesses medicines in Scotland, the Health Technology Board for Scotland (HTBS), will then make a ruling on whether the decision should apply north of the Border. The trust's policy has been in place since August.

The letter was sent, in error, to MS patient Jackie Doyle. Around the same time South Glasgow University Hospitals NHS Trust sent another letter to Doyle confirming that the process for qualifying for beta interferon begins with the assessment of the patient for suitability by the consultant and then moves on to the hospital asking the health board for funding.

Doyle, who is principal solicitor at the East End Community Law Centre in Glasgow, says this shows that the trust is ignoring its own policy.

She said: ''This means that patients are not receiving a full hearing. The procedure is meant to start with an assessment for suitability and then move onto assessment for funding. Effectively patients are being denied a clinical assessment.

''People should be allowed to find out whether a drug would help them. ''The government cannot assess how much this is going to cost them if they do not have accurate figures about how many MS sufferers would benefit from the drug.''

Doyle was assessed as suitable for beta interferon in January 2000 by her consultant at the Southern General, but Doyle claims that it was only when she threatened the trust with legal action that she forced managers to pass her case onto Greater Glasgow Health Board for consideration. She has since been informed, via a letter to her MSP, that her application has been denied. But Doyle says she is glad that she at least knows that beta interferon could help her. She says others are now being denied this information.

Mark Hazelwood, director of the Scottish MS Society, points out that if patients were told that beta interferon could help their condition they might want to raise funds to pay for the drug themselves.

He said: ''It is very important for patients to know whether they are suitable for beta interferon - some patients might want to access it through their own funds. This is really covering up the fact that large numbers of patients are suitable for this drug.

''Should the recommendation from the Health Technology Board for Scotland be that beta interferon should be available on the NHS then this policy of not assessing people will lead to more delays because we will not have a list of known cases.

''It has been very difficult to get information from this trust about their policy on beta interferon and when we see this letter we realise why this is the case - because an instruction has been given not even to assess patients to find out if they are suitable or not. It is outrageous.''

Shona Robison, SNP deputy health spokeswoman, added: ''This highlights how ridiculous the policy of a number of health boards is towards beta interferon.

''This letter proves that they are making it impossible for MS sufferers to be assessed as possible candidates for beta interferon. After everything MS sufferers have had to put up with this is another slap in the face. The policy should be reviewed immediately.''

The MS Society estimates that 1500 Scots could benefit from taking beta interferon. At the moment around 400 Scottish patients are prescribed the drug, which costs around (pounds) 7000 a year. In Greater Glasgow Health Board's area less than 10 people are prescribed beta interferon and that number has been the same for two or three years. Grampian, Fife and Ayrshire and Arran health boards still prescribe beta interferon. Grampian prescribes the most while Lothian Health Board has never prescribed beta interferon.

Harry Burns, director of public health for Greater Glasgow Health Board, last night defended the decision. He said: ''Beta interferon is extremely expensive and not very effective. More than a year ago we took the decision that we would not fund beta interferon because it is not a good use of resources.

''We spoke to patients and we found that the general feeling was that if we were going to invest in MS services we would be better spending money on physiotherapy than on this drug.''

The decision is backed by Professor Ian Bone, consultant neurologist at the Southern General Hospital in Glasgow.

He said: ''The whole point of an assessment is to find out if a patient is suitable for treatment. Suitability changes and if this drug becomes available the patient may need to be assessed again. Carrying out an assessment at the moment is a pointless process.''

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