HOW CAN we make life better for children with cancer, asks Lizzy Buchan
No-one really wants to think about children having cancer. Of course no-one of any age deserves cancer but it somehow feels that this pernicious disease should be affecting older people who have lived a little and who are strong enough to bear the gruelling treatments involved.
Grim as it is to envisage these tiny bodies struck down by cancer, it happens to around 300 young Scots every year. These young people will suffer even more if we ignore this uncomfortable truth.
This is not to deny that extraordinarily good work is done in this area, by doctors, charities and indeed politicians who are campaigning to help young people. But two reports published this week make it clear that we need to buck up our ideas.
Experts from Edinburgh told a major cancer conference this week that Scottish teenagers could be missing out experimental treatments as they could only access to a third of the clinical trials they were eligible for, compared to their English peers.
Only 19 of the available 39 cancer trials were open for children under 16 in Scotland.
Nicola Sturgeon even pledged that every child in Scotland would have access to clinical trials when she was health minister in 2012, as part of Holyrood’s first dedicated cancer strategy.
Scotland’s geography appears to be playing a part in this “trial gap” as there are three main centres for clinical trials in Aberdeen, Edinburgh and Glasgow.
The priority for treating children with cancer has been to keep them close to home, so often there are a handful of young cancer patients at hospitals scattered across the country.
Experts have said that these smaller hospitals may not be aware of ongoing trials or how to recruit for them. This lack of awareness clearly needs to change so clinicians can confidently and quickly work together on making sure young people get the best care.
It is also worth examining whether there needs to be more education about clinical trials among the public.
All the joined-up thinking in the world will not improve take-up among vulnerable patients and their scared parents if they do not understand the benefits of such trials.
Impressive medical advances have also meant that many children and young people are living longer with terminal illnesses, with the numbers shooting up by more than 50 per cent in the past decade.
While this is certainly good news, it raises many more questions about palliative care for the young.
An excellent report published by York University professors and the Children’s Hospice Association of Scotland on Wednesday pointed out the urgent need for dedicated end-of-life care for babies, children and young people.
It called for children under the age of one and those living in deprived areas to be a priority for improved palliative care. Newborn babies have very different needs to teenagers and adults, so a one-size-fits-all approach will not work.
Charities such as Marie Curie are already leading the way by trying to change the way we talk, and think, about dying. But this landmark report shows that children and young people must be placed at the centre of this conversation.
Health secretary Shona Robison welcomed the report and pledged to use its findings to shape the Scottish Government’s new strategy due to be published later this year.
Let’s hope that these thoughtful contributions to the debate can help to provide better access to treatment for young people, or to make their final days comfortable when treatment is over.