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Cross
Reference |
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The meeting was attended by Janet Gibbs (JG) (Chair of the Human
BSE Foundation), Jean Fairburn (JF) (Trustee of the Human BSE
Foundation), Peter Hodge (PH), Alan (AG) and Sandra Griffin
(SG) (Members of the Human BSE Foundation), Sir Robert Owen
(RO) (Chairman of the Trustees), David Churchill (DJC) and Malcolm
Tibbert (MT) (Family Representative Trustees), Richard Vallance
(RAV), Edwina Rawson (ELR) and Dipa Chakrabarti (DC) (Charles
Russell Solicitors (CR)). |
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A discussion document was circulated prior to the meeting by
JG. RO proposed to give an outline of how the Trust operated,
which he hoped would help to answer some of the points raised.
Cross references to the right of these minutes are to this discussion
document. |
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RO reported that Main Applications had been received in relation
to 141 Victims. By the end of the next Trustees' meeting arranged
for 23 July 2004, the Trustees will have considered 135 Applications
in full (except for the payments relating to particular hardship).
There are 6 remaining cases which are being processed at present.
By the end of the meeting on 23 July, the Trustees will have
considered 189 claims for the £5,000 payment as a result
of having suffered a psychiatric injury. To date, £27.4m
has been paid for compensation and £3.7m for expenses
and costs. [This figure excluded costs for Irwin Mitchell (IM)
paid directly by the Department of Health (DoH), and if these
are taken into account total expenses and costs paid from the
fund are £5.5m.] |
1.1
Purpose of the fund, and how this is being fulfilled |
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RO stated that he had requested specifically that the family
representative Trustees attend the meeting because of the criticism
that had been aimed at them by a number of families, which had
caused great concern for all of the Trustees and for the Foundation. |
2.6
Role of
the Family Trustees
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JG and the Foundation Members asked how the Trustees had been
appointed. RO explained that they had been appointed by the
Secretary of State. The scheme which led to the Trust Deed was
negotiated between the DoH and IM. The Trustees are legally
required to discharge their function in accordance with the
terms of the Trust Deed, which includes some discretionary elements.
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2.6,
1.1 |
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JG and the Foundation Members raised concern that the Trustees
and CR were regarded by families as agents of the Government.
RO confirmed that neither are part of the Government; the Trustees
are an independent public body, and have engaged CR as Secretariat. |
1.2
Families' State of Mind |
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JG and the Foundation Members felt that the Scheme was too complex.
RO agreed that the Trust Deed was a complex document and that
although at the initial stages of the negotiations it was understood
that there were discussions about creating a more simple Scheme,
this was strongly opposed by the Victims' families. As a result,
the Scheme had given rise to a considerable number of difficulties
which had not been foreseen when the Trust Deed was first drafted.
Consequently, the Trustees had previously suggested amendments
to the Secretary of State in order to improve the Trust Deed,
many of which had been adopted and had led to higher awards
of compensation to a wider number of beneficiaries. Some, however,
had been turned down by the Secretary of State. |
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One of the problems with the Scheme identified by RO was that
attempts had been made in some claims to prevent family members
being included, and it was only after investigations by the
Trustees that these family members who had a legitimate claim
for compensation had come to light. The Trustees are distributors
of public funds and have to ensure that compensation is paid
appropriately in accordance with terms of the Trust Deed. Within
these constraints, the overriding objective of the Trustees
is to award the fullest entitlement of compensation. |
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ELR explained the process for making claims. She explained that
CR processes some claims direct and works closely with other
Solicitors in cases where solicitors had been instructed by
family members. ELR referred to interim payments for urgent
funds to be released to living victims, and gave an overview
of the steps involved in dealing with a Main Application. She
explained that often, when the claim is submitted, there is
not sufficient detail of the potential Qualifiers under the
Scheme and that the Trust Deed provided a wide definition of
Qualifiers. For this reason, it is often necessary to ensure
that all family members are contacted to ascertain whether they
are entitled to make a claim and, if so, whether they wish to
do so. If this information has not been provided initially this
inevitably leads to delay in the claim being processed. Delays
are also caused by inadequate evidence being submitted in support
of a claim for dependency. |
2.4
The Claims Process |
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ELR continued that a detailed Report is prepared for the Trustees,
as well as a financial summary of the amounts claimed. The Report
is sent to the family's Solicitor, if any, for comment before
being forwarded to the Trustees. |
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ELR explained that a considerable amount of documentation is
sent to the Trustees in advance of a meeting. They usually receive
a large General Bundle providing documentation on various issues
that need to be resolved, a large lever arch file containing
claims for the £5,000 for having suffered a psychiatric
injury, and comprehensive papers relating to individual claims.
At the meeting, the Trustees make their decisions. After the
meeting, CR updates the documentation and sends this to the
Trustees for approval. In the meantime, CR prepares long letters
to the families explaining the Trustees' decisions, and the
Forms of Acknowledgement that have to be signed and returned
before monies can be released. After the Trustees have approved
the documentation, and the family members have returned the
signed Forms of Acknowledgement, money is released. Payment,
progress and banking records are then updated. It was agreed
that there was a great deal of work and dedication required
by the Trustees, that families had not been aware of. |
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PH asked whether the personal situation of a family was considered
when the Trustees made their decisions. RO confirmed that it
was, and that CR welcomed any direct input from the families
in this respect. The Trustees could only deal with cases on
the basis of the information submitted to them. CR had an open
door policy towards family members and families were encouraged
to deal with them direct, as this may expedite the process and
they had a full understanding of the Scheme as well as how Trustees
form and apply policies. However, at the same time, CR appreciated
that they could not cut across any existing Solicitor/Client
relationship that the family members had with their own Solicitors.
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JG and the Foundation Members did not think that families appreciated
they could contact CR direct. The Trustees and CR reiterated
that direct contact is welcomed, and invited suggestions as
to how the open door policy and approach of the Trustees could
be better communicated to families. |
1.2;
2.3 Legal Advice |
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JG felt that an important factor in this was the families' perception
that the process is confrontational. RO emphasised that the
Scheme was not an adversarial process because all the parties
had the shared objective of ensuring that families receive all
compensation which is due to them, within the confines of the
Trust Deed. CR puts forward all claims in such a way that will
achieve this. Because they are very familiar with the Scheme,
CR can advise families as to whether claims are within it. Nevertheless,
this is not how families see it, and this lies at the root of
many of the problems being experienced. |
1.2,
2.3 |
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JG and the Foundation Members stated that families felt that
the Trustees were refusing to pay claims that the claimants
believed to be valid. This gives rise to a feeling that CR and
the Trustees are trying to minimise payments. RO stated that
if certain payments are not made, it is because they are not
within the terms of the Trust Deed. |
1.2 |
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There were particular problems with earlier claims which had
been prepared for litigation, prior to the Scheme; as a result,
these claims did not always fall within the terms of the Trust
Deed. However, this problem is not confined to these earliest
claims. Families feel strongly that, if their claims are supported
by their legal advisors, there must be unresolved issues of
interpretation: 'the terms of the Trust Deed' are not as clear-cut
as we might wish. This is the main reason why the process is
seen as adversarial. |
3.
Issues of Interpretation |
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Concern was also expressed by Foundation Members about the cut-off
date for gratuitous care (S5.3.2), being 31 March 2001 or the
introduction of a Care Package for a Victim, whichever is the
earlier. RO explained that the Trustees were bound by this as
it is a term of the Trust Deed, as a result of negotiations
between IM and the DoH. Trustees had, themselves, felt concerns
about this, particularly as the Care Package is not uniformly
effective. However, representations to the Secretary of State
on this matter had not yet been successful. If the families
were concerned about this issue, they should raise it with legal
advisors. |
3.3.1
Gratuitous Care |
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SG was particularly concerned about the cut-off date of 26 October
2000 in Clause 5.4 which deals with claims for Carers' loss
of earnings. It was only recently that families became aware
of this as an issue, and felt that 'the rules had been changed'.
However, it was noted that IM's recent letter had been misunderstood
as it had only pointed it out as 'uncertain'. RO explained that
the Trustees had taken Counsel's Advice on this Clause and that
the correct interpretation was still being considered. It is
unclear from the wording of Clause 5.4 whether carers' loss
of earnings are subject to a cut-off date. |
3.3.2
Carers' Loss of Earnings |
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RO explained that the Discretionary Fund had been limited to
£5m. There is no doubt that when the Scheme was negotiated
it was not appreciated how many claims would be made on this
fund. RO had written to the Secretary of State requesting an
increase in the amount of the Discretionary Fund. A meeting
had been arranged provisionally to take place with the DoH,
a representative of the Trustees and CR on 28 July 2004. RO's
meeting with the Secretary of State would take place sometime
thereafter. |
2.2
Discretionary Fund |
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SG asked why it had taken a year for the request to the Secretary
of State for further funds for the Discretionary Fund to have
been made. It was explained that a draft letter to the Secretary
of State had been prepared 12 months ago. The DoH had been aware
of this letter and the intended meeting, but, understandably,
had asked the Trustees to prepare projections to support any
argument that the Discretionary Fund should be increased. CR
subsequently considered a number of sample cases for particular
financial or emotional hardship as a result of suffering a psychiatric
condition (Clause 4.3.2), and the Trustees had a Workshop in
February to discuss these. A Guidance Note of the principles
that the Trustees had adopted was circulated and put on the
Trust's website (www.vcjdtrust.co.uk). They subsequently received
the estimated number of claims from IM and projections were
produced thereafter. The letter had been re-drafted, updated,
and sent to the Secretary of State. |
2.2 |
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RO stated that he was in favour of the possibility of further
meetings taking place between members of the Human BSE Foundation,
the Trustees and/or CR. RO was keen that communications should
be improved. |
1.2 |
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RO confirmed that the total amount paid into the Scheme (Main
and Discretionary Funds) is £67.5m not £55m as queried
in JG's discussion document. The Trustees are required to manage
the fund which included paying compensation, investing the money,
paying taxes, expenses and legal costs. The taxes that had been
paid to date were the usual ones for this type of Trust Fund.
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2.1
Composition of the Fund |
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It was confirmed that in the terms of compensation awarded the
Scheme was generous and families received higher amounts in
compensation than they would receive in litigation. Again, the
Foundation Members felt that not all families have been made
aware of this. |
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Concern was raised about the fees paid to the family Trustees.
RO stated emphatically that this was unfair. The family Trustees
had not been aware that they would be paid when they accepted
their roles. At one of the early meetings, it had been decided
that a distinction should not be made between the family Trustees
and the professional Trustees in terms of remuneration. The
family Trustees provided a professional service, and therefore
should be paid professional fees. RO explained that the family
Trustees had provided the professional Trustees with a valuable
insight into vCJD; their contribution had been immense. RO referred
to a list of some of the particular issues in which the family
Trustees had made a significant contribution, which is attached
to these Minutes. RO urged the members of the Foundation to
ensure that family members are made aware of the valuable work
done by David and Malcolm. Criticisms of them were wholly unfair
and unfounded. JG stated that the purpose of raising these issues
was so that the Foundation has the necessary information to
reassure families on this. |
2.6 |
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Concern was raised by JG that families were being asked to keep
invoices/receipts for items relating to the Victim, whilst they
are providing care and may not be thinking too much about compensation.
This leads to expectations that may be disappointed when the
claim is finally made In some cases - and not always consciously
- this expectation may influence decisions about what they can
afford in the way of care for their patient. ELR mentioned that
it is important for family members to retain invoices and receipts
when they have received an interim payment to the Victim whilst
the Victim is alive. It is of paramount importance that the
funds are spent in the appropriate manner, i.e, for the Victim's
benefit, and the Trustees need to be satisfied that the Victim's
interests are being protected. Also, if receipts are submitted
subsequently in support of a claim under Clause 5.2 for personal
items that have been purchased for the Victim under Clause 5.2,
the claims are more likely to be met by the Trustees. |
2.7
Information and Guidelines |
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Foundation Members referred to a small number of cases where
there had been a problem with the Basic Sum. These families
felt that the circumstances of different family members had
not been sufficiently taken in to account. This can be a particular
problem, for example, when there is breakdown of relations between
family members. Sometimes an apparent agreement among relatives
at the time the claim is made is not subsequently adhered to.
This can cause great distress, especially if those who do not
receive a share of this payment were closely involved in caring
for the Victim. RO confirmed that the approach adopted by the
Trustees in relation to the Basic Sum is usually to follow the
Rules on Intestacy where no Will exists, unless doing so would
lead to unfairness. The Trustees give careful consideration
to this when dealing with the claims and, as mentioned previously,
can only take into account the information that has been put
before them. This is one reason why it's important for the Trustees
to be sure they're aware of all potential claims before making
this decision. RO confirmed that the Basic Sum payment is higher
than damages for pain and suffering and loss of amenity that
would be awarded at Common Law. |
3.2
Distribution of the Basic Sum |
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RO recognised that no differential between the suffering of
the earlier and later families is recognised in the Trust Deed,
other than the additional £5,000 paid for both the Basic
Sum (£125,000 instead of £120,000, Clause 1.29)
and Experience of the Family (£10,000 instead of £5,000,
Clause 4.1) in cases where the Date of Initial Diagnosis was
before 26 October 2000. DJC stated that his family had written
to the DoH in relation to this matter and urged other families
to do the same. It was believed that David Body would make representations
to the Secretary of State in relation to the earlier families
at the meeting on 28 July. |
3.4.3
Special Position of the Earliest Families |
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•
Strong concern was raised by the Foundation Members about
the requirement for a psychiatric report in claims made for
particular financial or emotional hardship under Clause 4.3.2.
Many family members find this experience very distressing,
and in some cases it can lead to serious setback in coming
to terms with their loss. RO explained that the Trustees are
not psychiatrists, and cannot discharge their function without
a report from a psychiatrist (who might already be treating
the applicant). This is particularly important where a claimant
may be recovering from psychiatric injury, as a psychiatrist
would be needed to assess retrospectively the extent and impact
of such injury. RO clarified that a psychologist or therapist,
not being medically qualified, could not certify diagnosis
of a medical condition. DJC and MT also explained that the
original aim of proposing compensation for psychiatric injury
was to encourage family members to visit psychiatrists and
pursue treatment if necessary.
• It was also explained that if a person had established
that they had suffered a psychiatric injury they may also
wish to make a claim that they had suffered particular financial
or emotional hardship. It was recognised that all families
had suffered enormously as a result of having lost a loved
one to vCJD, but the Trust Deed requires there to have been
suffering above and beyond the norm for the group of families,
i.e, "particular". Families are very concerned,
however, that this interpretation of 'particular' is too restrictive.
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3.4
Particular Hardship |
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JF expressed concern about arrangements for payment made to
minors. MT and RAV explained that, at present, the cost of administering
a trust for a minor would have to come out of the fund set up
for the minor. These costs can be large, and could use up a
significant amount of such a fund, especially for a small sum
over several years. To protect the interests of the minor, therefore,
the Trustees policy is ordinarily to recommend that a trust
be set up if the sum involved is greater than £50,000.
There is litigation between IM and the DoH in relation to the
costs of appointment of professional Trustees in Trust Funds
set up for children. |
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It was agreed by all that the meeting had been very worthwhile. |
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ATTACHMENT
CONTRIBUTION
OF DAVID AND MALCOLM
The
contribution to the administration of the scheme by David Churchill
and Malcolm Tibbert has been immense. In addition to being involved
in all aspects of the administration on a day-to-day basis, they
have had an exceptional role in many specific areas, some of which
are listed below.
· Dissemination of information. As family members, they have
been invaluable in highlighting what type of information should
be made available to the families and how this should be communicated.
· Unique input as to the families' experience of having lost
a loved one to vCJD. This insight permeates all of the Trustees'
activities, including correspondence, (for example, the long payment
letter to the families) and the outcomes of decisions (for example,
that victims may require additional heating).
· Highlighting the particular experiences and difficulties
of the earlier families.
· Insight into the intention of the parties when negotiating
the terms of the Trust Deed.
· Information as to medical developments, for example the
availability and impact of experimental treatment.
· Making themselves available to answer general queries from
families.
· Providing information in relation to the impact of the
Care Package on families.
· Being instrumental in bringing about amendments to the
Trust Deed, which have benefited the families and resulted in higher
awards of compensation or awards to recipients initially excluded
(e.g. "non-qualifying" carers).
·
Input in relation to the principles that have been adopted by the
Trustees, for example that any item for over £3,000 for real
or personal property should be supported by documentary evidence,
and particularly in relation to care.
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