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Contact Magazine Article

Issue 41

Date Winter 2008

Theme Moving on and Changes

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NACCPO - 10 years on

NACCPO (the National Alliance of Childhood Cancer Parent Organisations) is an umbrella organisation that now has over 35 member groups that support families of children and young adults with cancer during their cancer journey.

NACCPO was founded ten years ago at a meeting called by Professor Mike Stevens (then consultant at Birmingham) who was a leading light in SIOP Europe and the UKCCSG at the time, and a great supporter of ICCCPO (International Confederation of Childhood Cancer Parent Organisations) and parent involvement. Back then, the UK was practically the only developed country without a national parent group, or any significant input into children's and parents' issues for children with cancer internationally.

The initial objectives of NACCPO were to be a forum for sharing best practice among the member groups, to encourage and support the establishment of new parents' support groups at treatment centres, and be a national voice for children with cancer and their families. We joined ICCCPO in 2002.

NACCPO has steadily increased its membership, and in 2003, Associate Membership was established, so that organisations involved with children's cancer, but who were not 50% parent led, such as CLIC Sargent, Teenage Cancer Trust and Over the Wall, could also be part of NACCPO. Thus NACCPO acts a forum for all parties in the children's cancer arena.

Over the last ten years, NACCPO has provided representation for the views of children and young people with cancer and their families on various Department of Health/NHS working groups including NICE (National Institute of Clinical Excellence) Guidance Development Groups and the National Implementation Group for the Children's and Young Person's Improving Outcome Group, and Cancer 52 - a consortium of organisations which represent the less common cancers. Throughout this period NACCPO has enjoyed a good relationship with UKCCSG (now CCLG www.cclg.org.uk), establishing the role of parents in a variety of areas of its work, including through Contact and representation on the Executive Committee and a number of other committees.

A point was reached in 2004 when NACCPO had grown so much that it was decided to recruit a part-time Operations Manager (me) to support NACCPO's groups and activities. We have maintained links with ICCCPO and I have just returned from the annual conference in Berlin where I have seen numerous examples of the great work performed worldwide to help children with cancer and their families. The coming years will see NACCPO working closely with SIOP Europe and European parent groups to improve research, treatment and services for our children. NACCPO will continue its networking with other ICCCPO groups as we all have the same goal of providing all children with access to the best treatment, support and care possible, wherever they live. Until Geoff Thaxter passed away in August of this year he was a driving force in both NACCPO and ICCCPO and we owe him a great debt of gratitude.

Indeed, the support of Contact's publication costs by the Lisa Thaxter Trust has been key to improving communication with families and establishing parent input as a norm.

NACCPO co-ordinates the Annual Conference of Childhood Cancer Charities and Support Groups. Next year's conference will be hosted by the Youth Cancer Trust in Bournemouth on Saturday 20th June 2009. The conference is a great opportunity for networking with other parents, professionals and support groups.

If you have any questions regarding NACCPO or if you are a charity that would be interested in joining, then please email me on ro@naccpo.org.uk or telephone 01785 603763.

Find out more about our member groups and about NACCPO at www.naccpo.org.uk

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