Haemophiliacs who fear their families might be at risk of accidental infection with the human form of BSE are demanding guidance on how to deal with blood spills in their homes.

The wife of one patient said they had been advised by hospital staff to incinerate clothing and bedding and to put compensation claims to their local primary care trust.

The risk that variant CJD has been given to haemophiliacs from contaminated clotting factors is, according to most experts, probably small, but patients are worried by the announcement that a person might have contracted the disease through blood transfusion.

They fear their families might be endangered if rogue prion proteins said to be involved in vCJD were present in blood spills.

There is official safety guidance to hospitals, professional health staff and families of known vCJD patients, but nothing specifically for haemophiliacs, who are said to remain only at theoretical risk.

Some have been told they may have been exposed to vCJD risk in 1996 and 1997, because donations from people who later suffered from vCJD were included in the manufacture of clotting factors. The clotting factor is now imported from the US and the government has promised synthetic alternatives within three years. But some haemophiliacs have gone on "treatment strike" until then.

Peter Longstaff, in Jesmond, Newcastle, already infected with HIV and hepatitis C, is one of those. When he burst a vein, the bloodied carpet was removed by men in biohazard suits.

His wife, Carol Grayson, said hospital staff had advised her that clothing and bedding should be incinerated. "If we have to have bloody clothes and bedding incinerated we need guidelines and reimbursement of cost."

The Newcastle primary care trust said: "We would need to take legal advice on any claim."