More and more medical professionals are seeing the benefits of the growing number of support groups being set up to help the parents of children diagnosed with cancer. VICKI SWAIN looks at the vital role they now have in cancer care.

As with any serious illness, a diagnosis of cancer in a child is one the hardest situations a parent can face.

Many, along with family and friends of the sufferer, often feel at a loss as to how they can help, and for that reason an increasing number support groups have been emerging across the world.

Children’s cancer affects the whole family, not just the patient, and the medical profession generally welcomes the existence of any organisation providing support, and has actively encouraged the establishment of such groups.

They allow people to meet and talk with others in similar situations, whether it is to share their fears or to participate in the social events many of them organise as a break from the pressures involved with caring for a sick child.

The groups also exist to support sufferers of specific tumour types or focus on a particular patient population, like bereaved parents or siblings.

They play a major role in reducing the shock and isolation felt when a child is diagnosed with cancer, but often tend to operate locally at treatment centres with no national or international voice.

The formation in the UK of the National Alliance of Childhood Cancer Parent Organisations (NACCPO) has
brought together a number of previously isolated parent groups. It has helped to create a national voice for parents by working with medical, government and charity organisations on a national level, and helps to share best practice between member parent organisations in the UK and in countries around the world.

By working with parents and professionals, the organisation has realised emotional support can play an important role for families dealing with childhood cancer, especially if it comes from those who have experienced it.

NACCPO also provides a link between the UK parents’ groups and the International Confederation of Childhood Cancer Parent Support Groups (ICCCPO). With its 48 member countries it gives members an even greater voice and the chance to share even more information.

Geoff Thaxter, Chairperson of NACCPO and ICCCPO executive board member, says: “The idea of an international parent organisation was first discussed in 1992 and two years later it was formed.

“We want to help children around the world to access the best treatment and care, and we work closely with organisations like the international medical organisation (SIOP) to ensure this happens.

“At the moment we are encouraging ICCCPO members to twin with other groups and by pairing developed
countries with developing ones they can all learn from and support each other.”

In the Middle East, three cancer groups are already currently members of ICCCPO – Alexandria Group of
Childhood Cancer Care (AGCCC) in Egypt; the Society to Support Children Suffering from Cancer (known as
MAHAK) in Iran and CHAYIM, a group for children with cancer in Israel. Dr Abdallah Al-Nasser, a cancer specialist in Saudi Arabia, is currently co-ordinating professional cancer activity in 12 Middle Eastern countries and will soon be starting a programme to set up more parent organisations across the region.

For those working in the field of childhood cancer there are also study groups available. In the UK, the
Children’s Cancer Study Group (UKCCSG) aims to improve the management of children with cancer and to advance the knowledge and study of childhood malignancy.

The organisation currently has around 400 members, working in 22 specialised paediatric oncology centres throughout Britain.

Explained Dr Sue Ablett, Executive Director of the UKCCSG Data Centre: “Children’s cancer is sufficiently rare that professionals derive huge benefit from membership of a professional body.

“It gives them an opportunity to discuss difficult cases, provide support to junior colleagues and gain from the experience of more senior ones. Most importantly though, they provide the chance to standardise treatment nationally, develop collaborative multicentre clinical trials and, once developed nationally, provide the opportunity for further collaboration internationally.”

In the UK, the relationship between professionals in the UKCCSG and patients, parents and relatives has
been helped by the launch of Contact, a free magazine for families of children and young people with cancer.

Continues Sue: “This has proved an excellent vehicle for both sides to raise issues of concern or interest, to educate and inform, and to strengthen the bonds that come from being part of a very special community.

“Children’s cancer study or support groups can be influential in the amount and type of research into childhood cancer. This can be laboratory-based research or clinical trials, but for rare diseases both need active collaboration and participation.

“For biological studies, which are increasingly important in the identification of new prognostic factors, no single centre will have enough tumour specimens of the same type to carry out meaningful research. It’s only through sharing and pooling of data and material that this work can be carried forward.

“Creating a culture of collaboration and sharing of scarce tumour material will only come about with trust built up with colleagues over time and this is the real strength of a national group.” Funding is often a major difficulty and in the UK virtually all research into childhood
cancer, including the co-ordination of clinical trials, is funded from charitable sources.

“The problem is that childhood cancer research is usually in competition with adult cancer laboratory work or clinical trials, where patient numbers are so much greater. In a bid to secure funding, demonstrating good organisation and cohesion, and avoiding wasteful competition, is always a powerful tool,” adds Sue.

Anyone keen to develop a children’s cancer study or support group is advised to learn from those already in existence.

The UKCCSG is now 24 years old and has developed from 15 doctors, who met originally to try and form a cancer community, into an organisation with annual running costs approaching UK£1 million and a coordi-nation centre with 20 members of staff.

“We are always willing to meet with others to discuss ways that we can help and encourage others, and hopefully stop them from making the same mistakes that we did,” says Sue.

“We don’t claim to know it all, and will go to other groups on issues where we are not strong.

“It’s often better to start in a small way, but my advice to both parents and professionals is to talk to groups that are already well developed. Many countries face huge difficulties whether political, geographical or economic, but bringing people together to share experiences and swap ideas is vitally important.

“For professionals, paediatric oncology can be a hugely demanding career and the support of colleagues can often provide a much-needed lifeline.”
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