NACCPO Working Groups

Part of NACCPO’s aim is to act as a voice for parents of children and young adults with cancer by working with medical, government and charity organisations in the UK and worldwide.

Below are some of the current activities that NACCPO board members are participating in:

The Children’s Cancer and Leukaemia Group (CCLG) Publications Committee

The CCLG Publications Committee was formally established in 2005. The Committee's brief is not only to continue to develop resources that were begun under the UKCCSG Siblings Project Group but also to liaise with other cancer information producing organisations.

This ensures that unnecessary duplication of effort is avoided and collaboration will enable better publications to be produced.

The Committee consists of parents, survivors and health professionals who meet quarterly to review booklets in preparation and consider ideas for future publications.

Informal feedback and the sheer numbers of requests for the published booklets suggest they have plugged an information gap and are a well used resource.

Current publications can be viewed and downloaded from their site or are available free of charge in CCLG treatment centres.

Rachael Olley is the NACCPO representative on the CCLG Publications Committee.

Contact Magazine

NACCPO is a partner on the Editorial Board of Contact magazine which is dedicated to sharing knowledge of childhood cancer issues through it’s award-winning quarterly magazine.

Contact is distributed through the Children’s Cancer and Leukaemia Group (CCLG) to all of the CCLG treatment centres and is available free of charge to families of children and young people with cancer.

It is aimed at families with a newly diagnosed child, to those undergoing or off treatment and for bereaved families.

It is also highly relevant for professionals in the field or indeed anyone with an interest in childhood cancer.

Contact provides a unique blend of reliable, up to date information on childhood cancer, treatment and current research with articles of human interest from families and survivors.

The aims of the magazine are to provide continuing support to affected families, whatever the outcome of the child’s illness, to aid understanding of the research process and convey a message of hope and optimism.

Contact may be viewed, listened to or downloaded on-line, archived editions may also be viewed here.

Sally Amos and Rachael Olley are the NACCPO representatives on the Editorial Board of Contact.

The Rapport Study

We are represented on the working group for this study which is funded by Cancer Research UK.

The study is exploring the relationship between parent and practitioner when a child is diagnosed with Acute Lymphoblastic Leukaemia (ALL) and how the relationship changes during treatment.

This is an important study and one in which we hope will be for the benefit of parents, paediatric oncologists and other medical staff. Rachael Olley is the NACCPO representative on this working group and Eddie Hincks provided input prior to the start of the study.

Parents Association for Seriously Ill Children (PASIC) involvement in Working Groups

PASIC uses every opportunity it can to represent its families on various working parties for the planning and development of future children's cancer services.

As well as working with our partners at the Queen's Medical Centre, Nottingham we are involved in the Greater Nottingham Cancer Forum, East Midlands Children and Young People's Improving Outcomes Guidance Committee, the Healthcare Commission and the Nottingham Bereavement Forum, to name but a few.

It is our aim to be a voice for our parents and their children.

Bea Brunton and Julie Dixon are NACCPO Committee members from PASIC.

Joint ICCCPO and SIOP Initiative ‘Through My Eyes’ Project

The ‘Through my Eyes’ initiative is a three year international project designed to look at all aspects of cancer treatment and recovery.

It is a joint initiative between the International Confederation of Childhood Cancer Parent Organisations (ICCCPO) and the International Society for Paediatric Oncologists (SIOP).

The first two years of the project looked at children in hospital and at school.

The 2007 focus is ‘life with cancer at home and in the community’.

Once collated, the photographs will become part of a permanent exhibition of images designed to educate and inform the public about the issues surrounding childhood cancer.

Children from NACCPO member groups have taken part in each of the three years of the project.

Images of the project can be viewed on the ICCCPO home page and more about 'Through my Eyes’

Cancer 52

Cancer 52 is a consortium of organisations which represent the less common cancers.

After the "Big Four"; breast, bowel, lung and prostate, the mortality rates for the rest put together is 52% - more than half.

The Government has put huge resources behind diagnosis and treatment of the Big Four but more needs to be done to improve diagnosis treatment and outcomes for the other cancers.

Cancer 52 was formed in 2006 with a view to finding common ground on which to campaign.

The issues of concern to all the groups falls into the following categories: GP knowledge, treatment standards, data and information, better research, access to drugs and clinical trials. Of these, it was decided to begin with GP Knowledge.

Early diagnosis is vital in achieving successful outcomes but so often cancer symptoms are non specific and some of the less common cancers are rarely ever seen by GPs.

Childhood cancers fall into this category.

GPs are bombarded with literature and awareness raising campaigns but swamping them with information is of no benefit. More needs to be understood about how GPs and patients relate to each other and how GPs train and acquire knowledge.

A project scoping exercise is underway to determine how best to go about achieving earlier diagnosis of less common cancers. Libby Halford, CEO of the Childhood Eye Cancer Trust is a member of Cancer 52 and sits on the GP knowledge sub-group with a special interest in childhood cancers.