Posted on Monday 12 November 2018

in News, Press releases

Young people with cancer aren’t getting the support they need – ‘What About Me?’ report

Almost a third of young people diagnosed with cancer in the UK are missing out on vital support to help them cope.

Research by CLIC Sargent, shows that 31 per cent of children and young people diagnosed with cancer in 2017/18 went unsupported. The impact of cancer on the mental health of young people is stark, with 90 per cent experiencing anxiety and 70 per cent having depression during treatment. They also face financial worries and disruption to work and education. But they are not getting the help they need.

CLIC Sargent is now on a mission to find out how they can reach every child and young person who needs and wants support, after research revealed under 25s may be missing out on vital help due to the type of cancer they are diagnosed with.

Kate Lee, Chief Executive of CLIC Sargent, said: “Cancer can leave young people feeling terrified and isolated. No young person should be cut off from friends, school and their lives because they don’t know where to turn to get help. We know that having specialist support from an organisation like CLIC Sargent can make a huge difference to young lives facing cancer. But we also know we are missing the opportunity to support as many as 1000 of them. We can’t and won’t accept that.

“Over the last few months we have been exploring why these young people aren’t hearing about our services. We now know that 16-24 year olds who are treated in adult hospitals are not getting access to age-appropriate information and support. What’s more, we have found that most of the missing 31 per cent fall into just eight types of cancer.”

I don’t want another 23 year old like Chris to be sat on a cancer ward surrounded by people his parents or grandparents age thinking ‘what about me?’

Kate Lee, Chief Executive of CLIC Sargent

The charity wants to know how to bridge the gap and is calling on medics specialising in the eight cancer types to come forward to share their insight. It also wants to work in partnership with organisations and charities with specialist expertise in these areas. Most importantly, it wants to hear from young patients and their families who haven’t received support. One such patient, Chris McMillan, went unsupported after being diagnosed with bladder cancer when he was 24 and ended up having an emotional breakdown.

Chris’ story

“I had to have my bladder, prostate and surround lymph nodes removed. The weight of it all became too much. I was facing a six hour operation, and even if I did make a full recovery it meant I couldn’t have children. I was only 23 years old and being told I couldn’t have kids. I was in the adult urology ward with people twice my age, who had the same operation as me. People old enough to be my parents.

“I became extremely isolated. I stayed in my room and didn’t want to talk to anyone. I just felt really, really down about everything. I couldn’t see the light at the end of the tunnel. I couldn’t cope and I didn’t feel like I had anywhere to turn. I didn’t really feel like there was anyone I could turn to; I didn’t know what support was out there and I didn’t know where to look.”

Earlier this month, Chris celebrated two years cancer free. But every day, 12 more children and young people will hear that they have cancer.

Kate Lee continued “I don’t want another 23 year old like Chris to be sat on a cancer ward surrounded by people his parents or grandparents age thinking ‘what about me?’ We want to reach out to young people to work with them to ensure that in the future, CLIC Sargent is there for every young life who needs and wants our support.”

The survey for young people and parents online.

CLIC Sargent would like to hear from medical or healthcare professionals or cancer charities that can help us in our fight to get specialist care and support to everyone diagnosed with cancer under 25. If you can contribute in any way please email kate.lee@clicsargent.org.uk.

Complete our survey

ENDS

Notes to editors

For more information please contact Ellie Agnew on ellie.agnew@clicsargent.org.uk or call 07771 824563

1. About the report – There is a difference in CLIC Sargent registration numbers linked to eight specific disease types – brain tumours, bowel cancer, melanoma skin cancer, lymphoma, testicular cancer, ovarian cancer, cervical cancer and bone cancer. The highest numbers of gaps in CLIC Sargent registration data of these eight specific disease types are in young people.
2. If you are a young person with experience of cancer and you didn’t receive support, or if you’re a parent or work with young people with cancer, please fill in the survey: https://www.cvent.com/d/6bq3fh.
3. And if you are under 25 have been diagnosed with cancer and need support CLIC Sargent is here to help, talk to us at 0300 330 0803 or email whataboutme@clicsargent.org.uk.

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