Young people with cancer and families alongside 22 national cancer charities sign letter to new Prime Minister – over 1,450 people have signed in support

Today, Tuesday 23 July, Young Lives vs Cancer and Children’s Cancer and Leukaemia Group (CCLG) alongside 20 other children’s cancer charities, have written to the new Prime Minister, Sir Keir Starmer, and Secretary of State for Health and Social Care, Wes Streeting, together with over 1,400 young people with cancer,  families of children and young people with cancer, and members of the public. The letter asks for the new UK Government to make sure children and young people with cancer get the support they need.

When receiving the letter, Keir Starmer and Wes Streeting will learn of the struggles young people and families face when going through cancer treatment and why they need better support. Alongside signing the letter, supporters were asked to leave comments for the new Prime Minister and Health Secretary about what they think needs to change. One parent said: “More financial support for travel expenses and all expenses in general. I am still struggling to get Carer’s Allowance for looking after my son who was diagnosed 2 years ago with a brain tumour.” Another parent said: “More mental health support available. My daughter went through 9 months of treatment before dying and never got any support in that sense.”

Every year, over 4,000 children and young people (0-25) are diagnosed with cancer in the UK, around 12 per day. The letter states “the impact on children, young people and their families is unique both physically and mentally” and changes need to be made to help with this impact.

The letter goes on to explain: “During treatment, children and young people miss education, parents quit jobs, and social lives stop. Financial burdens are massive, forcing almost impossible choices. After treatment, support can disappear which can leave young cancer patients and their families alone.”

The Prime Minister and Secretary of State are invited to join the charities and others in the sector in a collective approach to make change happen.

Lauren Ridout is one of the many parents of a child with cancer who hope the letter is a first step to making change that children and young people with cancer need. Her son Artie was diagnosed with medulloblastoma just after his 3rd birthday. The family, who live in Dorset, travelled 150 miles up and down to Bristol Children’s Hospital for Artie’s treatment almost every week. At the start of his treatment, Artie’s family spent 12 weeks at the hospital and then spent the next nine months travelling back and forth for his chemotherapy and radiotherapy treatment.

Lauren said: “You want to think ‘it doesn’t matter money’s the least of our worries now’ but when you can see you are spending £100s on stuff you don’t really need to be paying for like take out, parking tickets when you’ve got your mortgage and other household bills it’s really soul destroying and there’s nothing you can do about it because you have to be with your child in hospital”

Georgia, 21 from Peterborough, has also signed the letter in hopes other young people with cancer get better support than she did. Georgia was diagnosed with Hodgkin’s lymphoma at just 19 years old in 2022. She had to go back and forth to the doctors multiple times before being diagnosed. She then chose to have treatment closer to home, rather than a centre that provided age-appropriate care, because of the costs of travel to get there.

She said: “For me, the call to improve diagnosis experience particularly resonates. I saw a GP multiple times and it took me being admitted to A&E to get a diagnosis”

The letter asks the Prime Minister and Secretary of State to work with the charities and organisations to help make vital changes happen. “They need holistic, tailored care. They need the financial barriers to accessing treatment and support removed. They need research that continues to drive advances in treatment. Children, young people and their families need to no longer be consumed by the burdens of housing, transport, education, employment, or debt when going through the most disruptive time of their lives. We know you will be very busy, but children and young people with cancer, and their families, just can’t wait”

Rachel Kirby-Rider, Chief Executive at Young Lives vs Cancer, says: “For too long, young people and families we support, like Artie and Georgia, have been struggling with the impacts of cancer. Instead of being able to focus on their treatment, young people and families have been struggling with the costs of cancer, their mental health, the impact on their employment and issues with housing. The list goes on and it isn’t right. They deserve better.

“With a new Government comes a new opportunity for us to work together to make sure children and young people with cancer and their families get the support they need. We all have a part to play, and we look forward to working together with our partners in the charity sector and the new UK Government to make this change happen.”

Jeanette Hawkins, CCLG Chief Nurse, said: “The needs of children and young people with cancer, and their families, are different from older adults. While some aspects of care are rated highly by families as evidenced in the under 16 and adult national cancer experience surveys, this masks many problems that need addressing immediately.

“Key areas that need attention through government and policy leadership are an earlier and better diagnosis experience, psychological support needs for the whole family, adequate financial support for families, especially with travel costs, and survivorship support to manage the often lifelong side effects of treatment on children and young people.”

The letter has been signed by representative from 22 cancer charities; Young Lives vs Cancer, CCLG (Children’s Cancer and Leukaemia Group), Ellen MacArthur Cancer Trust, Teenage Cancer Trust, Blood Cancer UK, Sarcoma UK, Anthony Nolan, The Brain Tumour Charity, Bone Cancer Research Trust, Supershoes, Teens Unite Fighting Cancer, OSCAR’s Paediatric Brain Tumour Charity, The Joshua Tree, SUCCESS Charity & consultant paediatric neuro endocrinologist, Grace Kelly Childhood Cancer Trust & General Practitioner, PASIC, Cancer Awareness for Teens & Twenties (CATTs), Candlelighters, The Tom Bowdidge Youth Cancer Foundation, Solving Kids Cancer, LATCH Welsh Children’s Cancer Charity and Brain Tumour Research.