• Suffering a psychiatric condition which has given rise to particular financial or emotional hardship.

• Carers' loss of earnings that cause them particular hardship.

• Victim's loss of earnings that cause particular hardship to the victim or his/her dependants.

• Dependency calculated by reference to potential earnings of the victim where to do otherwise would cause particular hardship.

• Particular hardship suffered by a dependant because he/she is unable to obtain adequate life insurance or mortgage protection insurance without paying a substantial additional premium as a direct result of his/her relationship with the victim.

Emotional/Financial Hardship

To date, the Trustees have considered 31 claims for psychiatric condition that has given rise to particular financial hardship, and 166 claims for emotional hardship. The Trustees have established a number of principles in relation to these claims, which are available by clicking here for the Guidance Note for Hardship (General) or here for Guidance Note for Particular Emotional Hardship, or here for Guidance Note for Particular Financial Hardship.

Carer's/Victim's Loss of Earnings

Guidance Notes and Application Forms for claims for (1) carer's loss of earnings which cause particular hardship are available by clicking here and here and (2) victim's loss of earnings which cause particular hardship are available by clicking here and here.

The meaning of particular hardship and applying this concept to the claims is extremely difficult. The first problem is that the Trustees have to decide what is meant by particular financial or emotional hardship. The Trustees recognise that all relatives who had a loved one contract vCJD have suffered hardship; however, the Trust Deed states that payments can only be made if the hardship is particular. To make this assessment, the Trustees have no option but to consider all claims for hardship and make a comparison between them so that they can identify the claims where the hardship is at the 'normal' or 'usual' level of severity and those where the hardship is more than 'normal' or 'usual', i.e. particular. This, in itself, is an invidious task, but is necessary under the present Scheme.

The second problem is that, in order to make the assessment between the 'normal' or 'usual' level of severity and claims where the hardship is more than 'normal' or 'usual', family members will normally have to provide details as to how their suffering is above and beyond that of other families. This is a distressing task for the family members, but is necessary under the present Scheme.

The third problem relates to the costs involved in preparing the claims to meet the requirements of the Trust Deed. As mentioned, details will be required as to how the family member's hardship is particular. If a claim is being made for financial hardship, this Statement will have to include a detailed consideration of loss of earnings (and documents to support these), outgoing expenses before and after the psychiatric condition, and the effect of receipt of the Basic Sum on hardship. Calculations will also be required to ascertain net available income before the psychiatric condition began and available income thereafter. The Trustees are concerned that there is no doubt that this process will incur considerable solicitors' and Trustees' fees, which are likely to be disproportionate to the amount of compensation available to meet these claims. They are doing all they can to keep the documentation they require to a minimum, but must ensure that they comply with the terms of the Trust Deed.

For the above reasons, the Trustees put forward proposals to the Department of Health that the Scheme should be simplified, possibly by removing the requirement for particular hardship. However any amendment would have to be supported by the families and at a meeting on 6 September 2004 attended by representatives of the Department of Health, Irwin Mitchell and Charles Russell, Solicitors, it became clear that it was unrealistic for the Trustees to hope for a simplification of the original scheme incorporated in the Trust Deed to be negotiated between the parties, i.e. the Department of Health and Irwin Mitchell. No proposals have been put forward by the parties as to what could be introduced to replace particular hardship and it seems that no amendment will be made in order to make the process less stressful for the families and cost-effective in terms of solicitors' and Trustees' fees.

The fourth problem is that the Trustees are concerned that the Discretionary Fund, initially of £5 million, would not have been sufficient to adequately compensate the claims for particular hardship. Regrettably, even with the additional £3 million, the limited Discretionary Fund will not permit the Trustees to compensate particular hardship to the extent they would wish. They are, of course, limited by the amount of funds available.

Sir Robert Owen met with the Secretary of State on 25 October 2004. Click here for the Abbreviated Minutes of that meeting.

On 19 July 2006 the Trustees again met with the Secretary of State with another proposal to simplify the scheme. Further information can be found in the text of the vCJD trust update and minutes section of the website.