Select Committee on Health Written Evidence

Memorandum submitted by CLIC Sargent (CP 13)


  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 research projects.

  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 hospital appointments.

  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 benefits—primarily Disability Living Allowance—are available in most cases of child cancer, the payment of this benefit is substantially delayed.

  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.

David Ellis

Chief Executive, CLIC Sargent

6 December 2005

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