Every day 12 children and young people are diagnosed with cancer. Yet not one of them has the same experience. All young cancer patients have different needs, opportunities and backgrounds and for some, the systems in place and gaps in support mean that their experiences are much more challenging than others. Far too many children and young people with cancer are experiencing inequality as soon as they are diagnosed due to a ‘one size fits all’ approach throughout much of the system. That’s why the support they receive must look beyond their diagnosis. It should provide them with what they need, so that they can go on to thrive no matter what. That’s why we exist.
Over the last year, we’ve transformed our services so we can help secure equity for all young cancer patients. From reshaping our social work model to ensure all new service users have equitable access to a consistently high standard of service, tailored to their needs, wherever they are based; to introducing our new winter emergency fund and launching our first Diversity Equity Inclusion and Belonging (DEIB) strategy. 2021 – 2022 has been spent looking at what needs to be done to create an equitable experience for young cancer patients.
These are the steps we’ve taken this year to making sure all children and young people get the tailored support they need at every single step of their treatment. We know we have more to do and we won’t stop until equity is achieved.
Support and access:
Making sure all children and young people can access and use our services
young cancer patients accessed our services this year
families stayed in our Home from Homes for a total of 839 stays
It really was a ‘home from home’. Not having to travel every day was so helpful.
When a young person or child is diagnosed with cancer, it’s important that they can quickly get the support they need. That’s why our Central Support and Social Care Team was developed; working with individuals to assess their needs and ensure they’re given the right levels of support. The team operates digitally so that wherever young cancer patients and their families live or are being treated in the UK, they can all access and benefit from our services – reducing a huge gap in our service provision and removing a barrier to support based on location.
1,407 service enquiries came in through our website this year from children, young people and families. The live chat function on our website played a big part in our central support reform. It’s rapidly reducing the barriers to support which young people were facing and making it easier for people to reach out.
All children and young people should be able to thrive after their diagnosis, not face ongoing debt and financial hardship as a result of their cancer treatment
In a year where cost of living shot sky high, families needed financial support more than ever before. It was imperative we supported those who were really struggling, so we developed new grants to help those facing uncontrollable costs.
worth of Young Lives vs Cancer Financial Hardship Grants were given out to those in need
young people and families received our new Winter Emergency Grant – worth £290,000 in total
grants were given to families in total to support various needs, equating to £966,000
I felt so relieved receiving the winter emergency grant as it meant I could afford to buy a proper coat, scarf, beanies and a blanket to keep me warm. I’m often too fatigued from chemo or in pain from my tumours so I have to use my wheelchair, and without moving it gets freezing and exacerbates my pain. Now I can enjoy being outside again.
Making sure young cancer patients have a voice
Young cancer patients deserve to be heard inside and outside Young Lives vs Cancer and we’ll keep working to make sure that happens. We invited them to contribute but to also challenge us to do better, so we’ve begun development of a Voice Board; a group of young cancer patients and families who will work alongside our Trustees. Externally, we’ve started work on a Children’s Voice Plan, which will amplify children’s voice and make them heard by those who can make change to government policy.
We’ve been fighting for better support for young cancer patients from the systems around them. Governments needed to know how much cancer costs families and we challenged them to do something about it.
The Scottish government launched a £5 million fund to help families be there for their children in hospital, meaning families will face less financial challenges when their child is diagnosed with cancer
After many years of political commitment we won funding for a Northern Ireland Family Fund
In the rest of the UK, we’ve continued to campaign hard and raise awareness of the costs of cancer at every opportunity. We’ll continue pushing to make more positive impact for families and change the price tag of cancer.
THERE'S STILL WORK TO DO:
We won’t ever stop
Here’s what we’ve committed to achieving over the next year.
We want to improve information accessibility across our website and printed materials for those with visual and hearing impairments and for those for whom English is not their primary language, so that everyone is able to access the right information
We will continue on our journey to work in a more empowering way than we have done in the past, by co-designing and co-producing more with our beneficiaries, and in 2022/23 we will increase their voice in our governance establishing a Voice Board. We will engage with diverse voices across the UK and respond to how the cancer experience is changing.
All children and young people have the right to access a consistent offer of support from Young Lives vs Cancer that reflects their assessed needs, and we will continue to shout loudly so they get better support from ‘the system’.
Want to know more?
You can read more our year by downloading our Annual Report and Accounts 2021/22 PDF.