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Information
on the Variant Creutzfeldt Jakob Disease (vCJD) Trust
Dr
David Stevens, Consultant Neurologist and Trustee of the vCJD Trust.
This article appeared in the Association of British Neurologists newsletter,
Summer 2002 edition
In October 2000 the Secretary of State announced that the Government would pay compensation to those affected by vCJD. For the first 250 cases a maximum of £55,000,000 has been allocated. The Trust Deed was signed on 15.03.2002. Please click here to view the details of the seven Trustees and Abbreviated Minutes.
In order to be eligible for compensation, two criteria must be met:
| • | The first is that the diagnosis is vCJD. If the patient has died, then the diagnosis is likely to be definite vCJD, but if the patient is still alive, then it must be that of probable vCJD. The Trust employs the legal test of the balance of probabilities, meaning that the probability of the diagnosis being correct is 51% or greater, which is a lower level of probability than that used clinically or in national surveillance. Under the terms of the Trust Deed, the diagnosis must be confirmed by the National CJD Surveillance Unit. A diagnosis from another source will not suffice. |
| • | Secondly, the patient must have resided in the U.K. for not less than 5 years between 1982 and 1996 and this must be confirmed by the National CJD Surveillance Unit. |
When the diagnosis is suspected, it is important that the National CJD Surveillance Unit is notified without delay. Early confirmation of the diagnostic probability and residency history will allow patients and their families to benefit from compensation. Such notification continues to be necessary for surveillance, research and the initiation of assistance from the National Care Package. The contact person is Dr Richard Knight.
Under the scheme, compensation of £120,000 or £125,000, depending on the date of diagnosis, can be made to victims and their families. Interim payments may be considered, when there is an urgent need for funds. Additional payments can be made to compensate for expenses and further payments can also be made to the victim's carers and dependants.
For further details, contact Edwina Rawson, at Charles Russell, Solicitors for the Trustees, at 8-10 New Fetter Lane, London, EC4A 1RS, Tel: 0207 203 5000, or visit the website.