WEDNESDAY 21 JUNE 2000

MR ANDY FULLER

  573. I now call Mr Andy Fuller from the National Alliance of Childhood Cancer Parent Organisations.

  (Mr Fuller) Good afternoon and thank you for inviting me here today. I should like to give a short statement on behalf of the National Alliance of Childhood Cancer Parent Organisations on the effects cancer has on its families and the effectiveness of cancer support groups. I have been involved with childhood cancer since my daughter Daisy died of acute lymphoblastic leukaemia in February of 1987. She was treated in three different cancer centres before she sadly died in July 1995 aged ten after a tiring eight-year battle against leukaemia. On that day of diagnosis the everyday worries and stress of a normal family life are all overtaken by the concerns of a very sick child. A family becomes divided: one partner has to divide their loyalties between the sick child, any other children, home and work. Daily hospital visits soon become routine and monotonous and as time passes days in hospital do become less frequent. You physically become mentally and medically orientated, constantly giving tablets, medicines and even taking part in some of the daily procedures that other medically trained personnel cannot do such as flushing out Hickman lines. Home soon becomes a second hospital ward. Friends and families are not welcome when they are suffering from even the common cold. You place a barrier and shield around your most loved treasures and you have to protect them. When infections do happen, you soon slip back into the hospital way of life, again having to travel many miles to specialist centres; but you will do anything to see your child get the best treatment they most thoroughly deserve. A parent or carer has to become a master of all jobs in the house: dealing with the stress and trauma of seeing a sick child live through so much pain, trying to keep the family united—sadly this often results in separations—taking on a new role of housekeeper, doing the washing, cleaning cooking, along with continuing to work and visiting the hospital, all while their partner cares for that sick child by the hospital bed. You continue to put up a front to friends and families telling them all is well and that you can cope, even though you know you are at your lowest and saddest time. Along with the treatment of childhood cancer, we also need to look at the cancerous problems which surround such treatment and these cannot be medically healed. These problems are primarily parent and carer orientated but are inherited from the diagnosis of childhood cancer. To list these problems in such a short space of time is impossible. They vary from money problems, job security, future employment and education for that sick child. Your child is being cared for by the best means possible, but it is also easy to forget that the parents, the brothers and sisters need to be cared for as well. To do this you need some form of support outside the hospital environment such as support groups like my own, COPARS, based at Addenbrookes Hospital. They need the support of the new national group to assist and guide them. Many of the problems which arise could easily be eased by the unity of support groups at local and national level with the hospitals, research groups, national charities and policy makers. Some of you may ask what is the need for a support group at local level let alone nationally? A parent needs somebody to talk to, to be able to pass on his or her worries, thoughts or concerns to somebody outside the sterile hospital environment. These willing volunteers support and give them the free time they deserve, when necessary forwarding any problems in total confidentiality to the relevant authorities within the hospital, the staff, the social or the Sargent workers. They can also provide the vital entertainments such as short holidays, parties or that much wanted gift for a sick or perhaps dying child. Recognition by the Government, research groups, hospitals of the need for local and national support groups is a must. These support groups can provide the vital link in the chain of treatment. They can greatly improve the standard of life of the patient, carers and their families, by calling on their vast knowledge gained from their own experiences. Support groups can also support the medical staff along with aiding research groups with various projects or surveys. A Sargent project was recently held in which NACCPO, in conjunction with the local support groups, found willing volunteers from their own vast databases to answer a questionnaire. This was far more cost effective and guaranteed a better response to the project's need and hopefully Sargent will be able to deduce from the results what the true family needs. Consultation in research projects and working together can only but improve the quality of life, not just for the patients but families as well. The input of user/customer research is an essential ingredient to making things better. Our national group has a specific interest in childhood cancer and wishes to play a role in helping you shape the way forward. In your research, please, do not forget that families need help as well.

  Chairman: Thank you very much indeed; a most moving piece of evidence. Particularly when it comes to childhood cancers we are all aware of the distress and emotion involved in that. Thank you for giving us so clearly your own personal experiences. We do take note. Thank you.