How to get assistance: Creutzfeldt-Jakob disease

NOT ALL those who had growth hormone therapy before 1985 have been made aware that they may be at risk of Creutzfeldt-Jakob disease (CJD). About a quarter of the 1,900 who had the therapy during the period of risk have not been located. In the Thames region, for instance, where 711 patients were resident, only 501 have been contacted.

The Department of Health has relied on the Institute of Child Health to contact former patients and has refused to take any direct administrative role itself. Many former patients are now members of the Child Growth Foundation, a voluntary group set up by parents in the 1970s. It is leading the legal campaign against the department for compensation on the grounds of medical negligence.

Tam Fry, who set up the charity and has a daughter in the at-risk group, is critical of the department's failure to take effective action to track former patients down. 'They have made it the job of already overworked clinicians who cannot be expected to do everything.'

If you believe that you received growth hormone treatement between 1959 and May 1985 you should contact the specialist or unit that treated you for verification. If this is impossible, you should contact the Department of Health's CJD follow-up unit at the Institute of Child Health on 071 242 9789. If you are currently receiving growth treatment with a biosynthetic growth hormone, or received treatment after October 1985, you should be reassured you run no risk of contracting CJD.

The Child Growth Foundation can be contacted on 081 995 0257 for general information and advice.