INTRODUCTION

  As a national body representing the interests of children with cancer, and their families, we are very keen to contribute to your review and to work with you to help improve treatment and care.

  NACCPO is an alliance of 11 parent-run organisations representing 5,000 families who are dealing, or have dealt with, childhood cancer.

CHILDHOOD CANCER—PERSPECTIVE

  Cancer can be considered an ageing disease. The older you are, the more likely you are to get cancer, the more likely you are to die from it, and the more death from it is accepted.

  Research and treatment in recent years has dramatically improved survival rates for children (now around 70 per cent overall). Nonetheless, families do not find it easy to accept that a child might get cancer, or die from it.

  The trauma is the most defining a family is likely to face. If treatment is not successful, the child and family have to come to terms with premature death, sometimes a death fulfilled over a period of months. If the treatment is successful, the child and family may face long-term issues relating to disability, education, reintegration into society and family break-up.

  More research is now, rightly, turning to these psychosocial issues. It is essential that the families who have experienced the trauma play a full role in this research, and work with the service providers to help shape improvements treatment and care.

TERMS OF REFERENCE

  Responding to the Select Committee's terms of reference:

1.  Are resources for research adequate?

  While people die from cancer, resources can be stated as inadequate. In terms of overall resources expended, the UK spends less as a percentage of GDP and relies more on charitable support. So, there is a case to apply standards aimed at bringing resource allocation into line with our peers.

2.  How well is research co-ordinated?

  Resources will always be scarce compared with what work might be done, particularly in the field of health. Therefore, a strategic plan, measures and controls are required to ensure more effective direction of resources.

  Childhood cancer research, treatment and care benefit in the UK from the co-ordinating activity of the UKCCSG at 22 treatment centres. This provides a good working model compared with adult cancer.

  More generally, the number of organisations and varying interests in the cancer field is such that we cannot be making best use of resources.

3.  What barriers are there to taking research into practice?

  A strategic plan is required to focus resources where the research needed. Some hospitals have research and clinical trial facilities working together—this is a good approach to ensuring theory and practice support each other.

4.  Number and distribution of centres of excellence

  For childhood cancer there are 22 UKCCSG centres treating most kids in the UK. The co-ordination means that children receive similar standards of service anywhere in the UK, at these centres.

  However, the centres also rely on the support of shared care hospitals to provide local treatment for some patients, for some of the treatment. Because these are general hospitals, the standards of care are not as good and the difference is very obvious to many parents.

  As a parent who has seen the benefit of specialised care for my child and also seen friends and relatives treated for cancer in general hospitals, it is obvious that the resource/skill levels at the latter are inadequate and directly affect survival rates.

  A strong conclusion, therefore, is the need to specialise this type of treatment, and deal with logistics (eg travelling) as a secondary issue to saving lives.

5.  Is there a need for a UK National Cancer Institute?

  Yes. NACCPO was formed as an alliance of local parent groups to emulate the benefits created by the UKCCSG. Both retain their local structures to perform their work but benefit from national co-ordination and collaboration.

  Similar collaboration could exist between funders whilst still retaining their autonomy.

  An NCI would:

—  Co-ordinate the interests of groups (service providers, funders, patients, government);

—  Create a strategic plan for improving research, treatment and care;

—  Monitor results and recommend changes.

6.  What conditions are needed to ensure investment in development and trials?

—  A demonstration that funding is part of an overall plan and benefits the whole, whatever the outcome of specific trials;

—  Involve the funders in planning (ie part of the NCI);

—  Link success to reward (financial or otherwise).

SUMMARY

  NACCPO would be delighted to provide further input to your review, written or otherwise.

  We know that what is available to children in the UK is better than that available for adults and, therefore, provides the basis for some of the changes needed.

  We have a specific interest in childhood cancer and wish to play a role in helping to shape the psychosocial research and development. The input of users, customer research, is an essential ingredient in making things better.

10 March 2000