Memorandum submitted by CLIC Sargent (CP
CLIC Sargent was formed in January 2005 through
the merger of two existing cancer charities, CLIC (Cancer and
Leukaemia in Children) and Sargent Cancer Care for Children.
Supporting children, young people and their
families throughout the UK, CLIC Sargent provides the clinical,
psychosocial, emotional and financial help needed by those affected
by childhood cancer.
The result, in part, of our combined 65 years
of experience in cancer care and treatment, some seven out of
ten children and young people diagnosed with cancer will survive.
CLIC Sargent is committed to improving this figure still further
through its specialist care and funding both of clinical and social
Stronger together, CLIC Sargent is now the UK's
fourth largest cancer charity by turnover and the single authoritative
campaigning voice on cancer care in children and young people.
Our remit extends to comment on all aspects of policy relevant
to the well-being of children with cancer and their families.
Priorities in our first year include lobbying on such issues as
the cost of cancer, and the bureaucracy surrounding benefit claims
and entitlement for the under 16s.
We welcome the opportunity to contribute to
the Health Select Committee Inquiry into co-payments and charges
in the NHS.
In its terms of reference for this Inquiry the
Committee makes specific mention of several types of co-payment,
including car parking charges, that can be demanded of those attending
CLIC Sargent welcomes the Committee's consideration
of co-payments but we note that the scope of this inquiry is limited,
perhaps as a consequence of the Committee's remit, to matters
directly affecting the operation of the NHS. As such it appears
to discount other costs which result wholly and unavoidably from
the illness for which the patient is receiving NHS treatment.
Indeed, car-parking charges at NHS hospitals,
while an unwelcome additional cost for family members accompanying
a child during their cancer treatment, are a very small part of
the expenses incurred by these families over the course of an
illness like cancer or leukaemia in children.
Far more significant costs are accrued as a
result of travel to the hospital for the child's treatment, overnight
accommodation for parents near hospitals, extra food and clothing
for the child undergoing treatment for their cancer, and higher
utility bills when caring for the child at home.
Although non-means tested benefitsprimarily
Disability Living Allowanceare available in most cases
of child cancer, the payment of this benefit is substantially
From diagnosis of their child's cancer to first
payment of DLA a family will have to wait for at least 17 weeks.
In this time, the average family will spend more than £1,500
to provide the care and support their child requires while undergoing
treatment. For some families, the figure can be far higher.
And the weekly benefit, once received, is backdated
only to the point at which the claim became eligible. It will
not cover the first 12 weeks of the child's cancer care. It will
not meet the costs incurred when treatment is at its most intensive
and parental worry at its peak.
We note that the administration of DLA is a
matter for the Disability and Carers Service, and is, therefore,
an issue that might more neatly fall within the remit of the Work
and Pensions Select Committee. However, we also observe that very
strong links exist between the Department of Health and the Department
for Work and Pensions on the costs of care resulting from illness,
and therefore the issue of the full financial cost of an illness
cannot be considered solely a matter for the DWP or the Parliamentary
Committee scrutinising its work.
CLIC Sargent urges the Committee to acknowledge
that the full financial costs of an illness such as childhood
cancer fall largely outwith the health care system. These costs
are of a far higher magnitude than the co-payments that can accompany
NHS treatment more narrowly defined. We ask the Committee to highlight
this broader concern in the conclusions of its Report, and to
communicate this issue clearly both to Government and Work and
Pensions Select Committee.
Chief Executive, CLIC Sargent
6 December 2005