Variant CJD Trust – no fault compensation

by Elaine Motion

Description of the trust set up to administer the government compensation scheme and the method of making a claim

The Journal, January 2003, page 13

This compensation scheme is designed to go some way towards recognising the trauma and tragedy suffered by patients and their families to try to provide a means of alleviating some of their suffering.

Details of the scheme were announced on 1 October 2001. Subject to certain qualifying conditions set out below, it is effectively a “no fault compensation” scheme.

The Government have allocated a maximum of £55 million for the first 250 cases.

An additional sum of £50,000 will be paid out in the first 250 cases to recognise the particular difficulties that these early patients and their families had to overcome.

The latest statistics show that as at December 2002 there had been 119 deaths from vCJD in the UK and an additional 10 patients have been classified as probably afflicted. Those individuals are still alive.

The vCJD Trust

The Trust is set up to enable the administration of the scheme briefly outlined above. There are seven Trustees who have been appointed by the Secretary of State for Health. They have a wide range of relevant disciplines and experience.

The Trust Deed was signed on 15 March 2002. The names of the Trustees, abbreviated Minutes and other information concerning the Trust can be found on its website (www.vcjdtrust.co.uk).

In order to be eligible for compensation various criteria must be met. Firstly, the diagnosis of a patient with vCJD.

The Trust Deed indicates that the criteria will be satisfied if it is confirmed that the patient is suffering from probable vCJD. The decision concerning the probability of the diagnosis must be confirmed by the National CJD Surveillance Unit which is based at the Western General Hospital in Edinburgh and headed up by Dr Richard Knight. This unit deals with all cases of suspected vCJD.

If the patient has died then the diagnosis may have been confirmed by post mortem examination. If the patient has died and no post mortem has been carried out or is still alive, then the Surveillance Unit must advise the Trust whether or not that patient has suffered or is suffering from probable vCJD. It should be stressed that a diagnosis from another source outwith the National CJD Surveillance Unit will not suffice in terms of the Trust Deed.

The second criteria is that the patient must have resided in the United Kingdom for not less than a total of five years between 1982 and 1996. Again, for the purposes of compensation, this must be confirmed by the National CJD Surveillance Unit who will use data supplied to them by the patient and/or the family.

It goes without saying that it is vitally important that when a diagnosis of vCJD is suspected, the patient is referred without delay to the National CJD Surveillance Unit.

This is, of course, necessary for continuing national surveillance; associated research and for the prompt initiation of assistance from the National Care Package. As you will be aware, as of 1 October 2000 the Government initiated a care package scheme to ensure that patients suffering from this illness would receive all the necessary care required. If further information is required in relation to the National Care Package then this can be accessed to a degree in the Trust’s website as detailed above, but further information can be obtained from the Department of Health.

Patients will obviously benefit in many additional ways if they are able to receive early compensation. Therefore, the prompt confirmation by the National CJD Surveillance

Unit of the diagnosis probability and the residency history is of the essence.

The relevant documentation, including the Trust Deed, and the main questionnaires for claimants are accessible on the website.

Claims, with the completed questionnaire and supporting documentation, can be submitted directly to the Trustees’ solicitors, Charles Russell, 8-10 New Fetter Lane, London, EC4A – telephone 0207 203 5000. The point of contact is Edwina Rawson. The Trustees’ aim is to assess and finalise claims as quickly as possible. It will be appreciated that to enable that to be done it is paramount that the documentation provided is as complete as possible. The Trustees’ solicitors are only too happy to assist and discuss any queries that may arise in providing such information.

Under the scheme, compensation of £120,000 (or £125,000, depending on the date of diagnosis) can be made to victims and their families.

Additional potential heads of claim include single sum payments for the experience of the vCJD for the family of the victim; psychiatric condition for a member of the family arising out of this experience; psychiatric condition causing particular financial or emotional hardship; funeral expenses; real or personal property purchased in relation to the patient; care costs (whether purchased or incurred); travel for providing care; carers’ loss of earnings causing particular hardship; victims’ loss of earnings; future losses to the deceased’s dependents and professional costs. All the relevant definitions are within the Trust Deed for each of these potential heads of claim.

It should be stressed that the Trustees will consider interim payments before a full claim has been considered, where there is an urgent need for funds as when, for example, a patient is still alive.

Trust website – www.vcjdtrust.co.uk

Elaine Motion, Partner, Balfour&Manson