U.K. Charity Focuses On Treatment for Teenagers

Its cancer services may be suffering from lack of cash from the state-funded National Health Services, but Britain is playing a pioneering role in the care of teenage patients—thanks to charity. The Teenage Cancer Trust was formed in the late 1980s after the mother of a 13-year-old with cancer highlighted the trauma of having cancer during the turmoil of adolescence. She was concerned that her daughter would be isolated by her illness and thrust back into a dependent state just as her peers were asserting their independence. The initial idea of the trust was to establish a single specialist unit for teenage cancer patients within The Middlesex Hospital in central London. There are now six units throughout the United Kingdom and five more are planned. The trust estimates that 20 units are required to treat all teenagers with cancer in the United Kingdom. At present, many are treated in pediatric wards with more cots than beds, or in adult wards where they may be the youngest patients by 50 years or more. Evidence is emerging that the teen units could improve survival rates. Two broad benefits are reported to affect outcome: development of clinical expertise in treating teenage cancers, and the creation of a teenage-friendly atmosphere. Last month the trust attracted delegates from the United States, Canada, India, Australia, and Europe to a wide-ranging conference in London. One key take-home message was that small is beautiful. This emerged from an evaluation of the 11-bed Middlesex Hospital unit where staff perceived lack of space as a potential problem, but patients and parents had a wholly different view. Anne Mulhall, Ph.D., told the meeting: “On such a small ward, lack of privacy might be considered as problematic, but for the parents, being part of the unit was more important.” The unit’s size helps to promote a relaxed, sociable atmosphere that goes hand in hand with “rituals” such as open visiting and late waking, and provision of mutual support. These factors “undoubtedly improved teenagers’ morale and their ability to cope with both cancer and treatment.” To date, clinical trial results suggest that the type of treatment protocol carries more weight than place of treatment. In studies comparing adolescents treated on pediatric protocols with adolescents treated on adult protocols, patients on the pediatric protocols have shown a clear survival advantage. “In all likelihood the results reflect the nature of the treatment rather than the place of therapy,” said Ronald Barr, M.D., professor of pediatrics, pathology and medicine, McMaster University, Ontario. “It seems more likely that adolescents have disease which is more akin to childhood disease and are therefore more appropriately treated with childhood-focused protocols.” Staffing was another key issue at the conference. The number of beds in the six United Kingdom units ranges from four to 12: the more beds, the more affordable a unit becomes in terms of staffing ratios. Kevin Windebank, senior lecturer in child health, University of Newcastle-upon-Tyne, and consultant pediatric oncologist at the city’s Royal Victoria Infirmary, emphasized the need to maintain a flexible attitude to staffing. He said: “We have six beds. It may be hard to imagine how we staff that. We have a dedicated team of nurses, but we’re flexible. There are some days when there’s only one patient on the teenage unit, so the nurses help out on the ward. At other times the unit is really busy.” Yvette Cooper, U.K. public health minister, has hailed the TCT units as “an excellent example of how the voluntary sector and the NHS can work in partnership to achieve a high quality for a specific group.” It is one of many areas in the United Kingdom where charities have led the way. The best known is the modern hospice movement, which began in 1967 with the opening of St. Christopher’s Hospice in London. This helped to establish palliative care internationally as a specialty in its own right.

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