Alice’s Arc was delighted to attend the first-ever debate on childhood cancer on Tuesday 26th April at the House of Commons. Dame Caroline Dinenage, MP for Gosport brought forward this debate following the work of Sophie’s Mum, Charlotte (Sophie’s Arc) who brought this to Caroline and the Health Secretary, Sajid Javid.
Caroline Dinenage set the scene with her vision for a childhood cancer mission to form part of the new UK 10 Year Cancer Plan. She referred to childhood cancer as the ‘Cinderella’ of cancers and the ‘backwater of cancer research’.
The debate was special for many reasons. Here are a few:
1- It was incredible that Sophie’s mum managed to secure this debate with Caroline Dinenage.
2 – It was an honour to attend with Gaspard’s Arc, Sophie’s Arc and Will’s Arc.
3 – There were MPs who contributed on behalf of Alice’s Arc, Ebony’s Arc, Elsa’s Arc, Jessica’s Arc and Oliver’s Arc and other fellow rhabdomyosarcoma families.
4 – 22 MPs across parties and geography spoke of their constituents experiences of childhood cancer. Mark Tami MP shared the story of his 9 year old son’s diagnosis with leukaemia. He wanted childhood cancer to become a global focus via the G7/G20 health summit.
5 – We were proud that Laura Trott MP did a fantastic job raising the story of her brave constituent, Alice, and highlighting the work of Alice’s Arc and how we must and can do better for these children.
6 – We are all too familiar with the terrible word ‘rhabdomyosarcoma’ and to hear it voiced over and over again was almost a relief, yet so very emotional.
7 – As the stories were told the key issues regarding childhood cancer came up time and time again driving home the message – the path to diagnosis, the harsh treatments, the long-term side effects for survivors and the devastating impact on family members psychologically, logistically and financially.
RESEARCH – The calls for better investment for researching childhood cancer came up consistently. Given our focus investing in research for rhabdomyosarcoma, Alice’s Arc wholeheartedly supports this. Currently, nearly all research for childhood cancers in the UK is funded by charities, only 3% of public funding is directed to it. This figure for public funding for childhood cancers has not increased for the last 10 years. This must change. The EU has childhood cancer as a major focus for their Cancer Mission and EU Beating Cancer Plan. Could the UK Government invest in this type of plan both for childhood cancer care and research or link it in as a separate section in the new 10 Year UK Cancer Plan?
Maria Caulfield, Minister for Patient Safety & Primary Care wrapped up with the Government response and it was disappointing and sadly changed the tone of the constructive debate.
1 – On diagnosis/referral pathways/GP training: she suggested that NICE guidelines and the NG12 guidelines underpin cancer referrals and that online education programmes such as Gateway C are comprehensive portals for GPs to access to understand signs and symptoms of childhood cancers.
2 – On research – she raised the whole genome sequencing via the NHS available to all children with cancer since 2019. – she raised progress treating childhood cancers and acknowledged that for rhabdomyosarcoma, children are not surviving and that research is crucial to how we deal with it long term. – she highlighted the work of the BRC Royal Marsden and the BRC Great Ormond Street government funding streams.
We are conducting due diligence and evidence building in order to respond to Maria’s speech. We are looking forward to sharing our findings. We are aiming to constructively challenge some of the points highlighted by Maria and translate them into concrete action items. We will do this by working together with Sophie’s Legacy and other childhood cancer organisations who all have the same mission. Together we are stronger.
This debate was such a fantastic step in the right direction but now we need the Government to commit to #thechildhoodcancermission that Caroline Dinenage so eloquently spoke about. For those skeptical and for those who think childhood cancer is rare, let’s put it another way. Cancer is the number 1 killer of children under the age of 14. For every child lost to the disease, think about the number of years of life lost, all that potential. Now, that is a vast number of years and that is the tragedy that bereaved childhood cancer families face. The loss of potentially 70 years of life and all that could’ve been experienced in that time. That has got to count for something. That is what we are all fighting for – the gift of a child’s life.