in the fight against child cancer
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.
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
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
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
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
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,”
“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.”
Paediatric Clinic helping Middle East children
The Mayo Clinic, through its Middle East Regional Office
in Dubai, UAE, has announced a new coordi-nated care
programme for children.
An International Paediatric Clinic has been launched in
Rochester, Minnesota, as part of a new general paediatric
The clinic is a consultative service to paediatricians and
family physicians who wish to refer patients, as well as a
source for second opinions for parents who seek additional
or further evaluation of a problem. Complex and often
undefined problems are addressed.
According to Nancy Henry, MD, PhD, head of Mayo Clinic’s
international paediatric practice and a paediatric
infectious disease specialist, more than 100 children have
visited the clinic since it opened in 1999, including
children from the Middle East.
Dr Henry has helped to organise the care for 90 per cent
of the patients, especially those coming from Middle East.
She observes that the majority Arabic children are seen
during summer, when parents often visit for their own
medical needs and subsequently request evaluations for
She added that many parents from the Middle East bring
their children neurological problems, including cerebral
palsy. Other children have had malignancies, and went have
chemotherapy and occasionally, bone marrow transplants.
Dr Henry says the Mayo Clinic has been well received by
families from the Middle East countries and Gulf states.
“They appreciate our comprehensive evaluations for
children and the expertise to address complex medical
issues and organise a plan of care. their children are
healthy, then they are reassured our exams.”
For more information about the International Pediatric
Diagnostic Clinic, contact the Mayo Clinic Middle East
Regional Office Dubai on 9714 331 0556.
The Mayo Clinic, a not-for-profit American medical
provider, provides patients from around the world with
comprehensive treatment, accurate answers and detailed
explanations in over 100 medical specialties.
The Mayo Clinic Middle East Regional Office in Dubai helps
co-ordinate care for patients travelling the Mayo Clinic,
reviews medical records and makes recommendations about