26th April 2002 Third Meeting

  • The Minutes of the Second Meeting were agreed.
  • Vicky Vidler and Edwina Rawson reported on their attendance at the CJD Support Network Conference.
  • Sir Robert Owen confirmed that Dr Knight had agreed to act as a Special Adviser.
  • Comments on the Main Application form have been received from David Churchill and David Body.
  • The Care Report of Margaret Douglas et al., 1999, was considered. It was noted that there had been considerable improvements in care since her Report.


  • Sir Robert Owen confirmed that, in addition to the diagnosis, residency requirements had to be met under the Trust Deed. The Trustees agreed that confirmation of residency from Dr Knight, after taking a statement from the victim and/or their family, would be sufficient.
  • In cases where there is a conflict as to who should receive compensation, resolution would be difficult. Trustees need to be satisfied that everyone who is entitled to make a claim has done so.
  • Louise Skillman and Rachel Warren at Charles Russell, Solicitors, would assist victims and their families to complete the forms and to obtain documentation.
  • Charles Russell, Solicitors, would investigate the cost of setting up a simple website for the vCJD Main Trust. Details would also be added to other relevant websites.

Interim Payments

  • Interim payments could be made by way of written resolution after the applicant had provided all the appropriate information and documentation.

Principles Relating to Care

  • Sir Robert Owen confirmed that compensation for care would be paid from the Discretionary Fund, which is capped at £5 million. Trustees should bear in mind that other payments under the Trust Deed must also be made from the Discretionary Fund.
  • An hourly rate for providing care of £5.22 was agreed, which will be reviewed at a later date to take account of inflation. This was based on an average of the standard hourly rate of the National Joint Council for Government Services as adopted by Crossroads Caring for Carers for 1998-2000, spinal point 8.
  • It was agreed that a flat-rate would apply for both nursing and non-nursing care. Otherwise, Trustees would require precise and detailed information from families as to who provided what type of care and for how many hours. No distinction will be made between care which is properly described as “nursing” care and other care, as all care will have been provided with the same dedication and commitment.
  • It was decided that an enhanced rate for care provided at weekends and holidays would not apply as such enhancement is not applied to common law claims for damages or applied in the assessment.
  • The progression of the illness would be divided into four stages – three home care stages, and one hospital or hospice stage. Dr Knight and Gordon McLean should be instructed to produce a description of each stage of the illness, and to include the likely care requirements at each stage. This would provide a structure within which individual claims can be considered. There would be a maximum number of hours that could be claimed at each stage.
  • Invoices or receipts, or other documentary evidence, of purchased care should be submitted.
  • Travel costs for providing care would be paid at 21p per mile. This is based on the approximate average of the total pence for running costs per mile (20.3) at the rate in the AA Motoring Costs 2000 (PNBA 2001 Facts and Figures). This rate is similar to those applied in personal injury cases.
  • Claims for £5,000 for psychiatric injury suffered by a family member required a GP’s letter. Dr Knight would be contacted to recommend a psychiatrist to prepare summary descriptions of the probable diagnoses to assist the GPs prepare this letter.
  • Claims for over £5,000 required a psychiatric report confirming that the family member had an identifiable psychiatric condition.
  • Invoices or receipts, or other documentary evidence, of funeral expenses and costs of personal items for the victim or of property alterations should be submitted.
  • A letter from the employer, or other documentary evidence, should be submitted where a claim was being made for carers’ or victims’ loss of earnings.
  • Principles relating to dependency would be considered at a later meeting.

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