The government is to establish experimental treatment centres for fatal brain diseases such as the human form of BSE - despite scientific advisers' reluctance to endorse the drug that is being used.
Three patients are already being administered the drug via surgical tubes into the brain, a fourth is expected to start the treatment soon and more families are thought likely to seek legal permission to do so.
The Department of Health is hoping a handful of hospital units will agree to offer the treatment using pentosan polysulphate so that the complicated process of arranging operations, paying for them out of NHS budgets and providing after-care at home for each patient can be streamlined.
The equipment needed to implant the tubes is expensive, at least £30,000 and some estimates put it far higher.
Small but significant signs of improvement have been reported in Jonathan Simms, the Belfast patient with variant CJD, and the first on pentosan. Graham Steel, vice-chair of the Human BSE Foundation, said: "In the case of Jonathan Simms, there was a delay of eight months before treatment was administered. It is imperative that if any treatment is wished it should be administered as quickly as humanely possible."
Treatment of more recent cases has taken up to two-and-a-half months to organise but patients with sporadic CJD, unrelated to BSE, sometimes die within weeks of showing symptoms and usually within six months.
Pentosan's most ardent supporters do not claim it could cure the inevitably fatal diseases but believe it might at least stop progression. Stephen Dealler, a scientist who campaigned for its use, said: "I am very pleased that further treatments will be going ahead as this seems currently to be the only treatment that can be given with some indication of clinical response in the patient."
Government advisers on the committee on the safety of medicines have, however, insisted that there is still insufficient information in Jonathan Simms's case to reach any conclusions about the drug's efficacy or safety.
The health department confirmed that it wanted to identify specialist units. It said the treatments could not be regarded as trials but would like to maximise the information that could be gained from these treatments and was seeking advice on a common set of clinical parameters that could be used to monitor patients.
