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Celebrating those who ring the bell and supporting those who do not

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Last week, my limited scientific knowledge (a barely scraped GCSE pass) was stretched to the limit by a brilliant presentation given by Professor Persis Amrolia, from the UCL Great Ormond Street Institute of Child Health, about research into CAR-T (chimeric antigen receptor T-cell) therapy. The presentation was part of an event to showcase the work of Children with Cancer UK, which has funded part of the research. The presentation was part of the activity around annual Childhood Cancer Awareness Month, which runs throughout September.

CAR-T, I learned, is a cutting-edge treatment for aggressive leukaemia when other drugs have failed, which is personalised to the individual patient. Immune cells are taken from a sample of the person’s blood and genetically altered to recognise and destroy the cancer cells. The professor’s presentation was bookended by case studies of two little boys with aggressive leukaemia he had treated. One died aged six, some 10 years ago, having relapsed following significant traditional chemotherapy, radiotherapy and a bone marrow transplant. Another, more recently, also aged six, having similarly relapsed following traditional treatment, is currently free of cancer and at home, having participated in the CAR-T trial.

It was fascinating and moving in equal measure and an important reminder that we cannot stand still in developing better diagnostic tools and more personalised, kinder treatments for children and young people with cancer. On the same day, NHS England announced that CAR-T would be made available to children through three hospitals. Early days, but CAR-T has already been mooted as the most significant treatment breakthrough for a generation.

Gruelling treatment

Every day, 12 children and young people are told they have cancer. Like every family coming to terms with a potentially life-threatening diagnosis, it is devastating news. And alongside the physical and emotional turmoil, there are wider implications for family life. The social and economic impacts were highlighted by CLIC Sargent last week. The charity’s report found that children with cancer face journeys twice as long, costing twice as much as adults with the same disease to get to specialist treatment centre. On average families face an average 60 mile ‘cancer commute’, at a cost of £180 a month.

  • £180

    The average cost of a child's 'cancer commute' for treatment

While the treatment can be gruelling, more and more children are able to ring the end of treatment bell which can be found on cancer wards across the country. There’s much to celebrate – improvements in diagnosis and treatment means the survival rate for children with cancer has increased significantly, with 84% surviving five years or more. Anyone who has seen a family ring the end of treatment bell will know how emotionally powerful it is.

But, while more children are surviving free from cancer, and new breakthrough treatments like CAR-T are being developed, sadly around 250 children and young people with cancer die each year.

When curative treatment fails, it is crucial that children have access to high quality palliative care. This means professionals having difficult conversations with families, and discussing what is important to children and young people and how they can be supported to live their lives. It means offering different choices of care and support at the end of life, in hospital, at a children’s hospice or at home. And it means supporting the whole family, including the child’s brothers and sisters during this difficult time.

Patchy care

Together for Short Lives’ evidence suggests that for these children, access to round-the-clock children’s palliative care is patchy and inconsistent. Not every family is aware of the choices available or supported to make them. I would urge everyone – commissioners, clinicians and policy makers to read Sacha Langton-Gilks’ book Follow the Child, which draws on her experience of caring for her son David, affectionately known as DD, who died following a brain tumour in 2012, aged 16. It is a powerful account of the importance of planning at end of life and the importance of a good death for the whole family.

  • 250

    Children die from cancer in the UK each year

As Sacha says, “I consider having managed a good death for my child, fulfilling his last ever wishes as the greatest achievement of my life and my biggest consolation in the howling chasm of grief. I meet families who have not been given that choice and they tell me they will never recover and, knowing what it means to me, I know they’re right”. Sacha is passionate and determined to make sure that all families facing the unimaginable know that charities like Together for Short Lives and local services across the country are there to support families, helping them to explore the choice of care that is right for them.

Childhood Cancer Awareness Month

We are blessed in the UK to have some amazing oncologists in the NHS and some brilliant charities supporting children and young people with cancer. So, to support Childhood Cancer Awareness month this September, we should re-affirm our commitment to working towards a world where no child or young person dies from cancer. We should celebrate all those children who get to ring their end of treatment bell and continue to invest in research so more can do in the future.

But, we should also pause to remember those children whose treatment will not be successful. And we should work tirelessly to ensure that every child and their families are able to make the choice or care that is right for them and are supported with high quality children’s palliative care. Because as Dame Cicely Saunders remarked – “how people die lives in the memory of those who live on”.

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