Kate Lee, Chief Executive’s blog, ‘Time to go big or go home’

In October CLIC Sargent produced it’s 2017 Impact report. Three people we supported – Kaiser, Vicky and Seren – hijacked it, describing in their own words the impact we had on their lives. It wasn’t their brilliant writing that caused a bit of a stir. It was the part where we said “Hands Up, We’re Not Perfect” because we listed, very honestly, some things we got wrong. Most depressingly for me yet again we failed to increase our reach, meaning for another year some 1,000 or so children and young people with cancer did not get any of the specialist social care support CLIC Sargent uniquely provides.

Each year for the last six years CLIC Sargent has been reaching around 69% of all children and young people diagnosed with cancer. Our reporting systems, impact stats and experience data tell us that we have a significant impact – which we are incredibly proud of. But we know how many are diagnosed and we know how many we work with, so we absolutely know the gap. Throughout those years we’ve been using this statistic of only reaching ‘2 out of 3’ as a key fundraising message. It’s a mantra everyone in the organisation knows. It was in our 2015 strategy, it was in my CEO recruitment pack three years ago, but it was also like wallpaper; something we walked past every day, a problem that had sat in the too difficult box for too long.

I had been to a really inspiring ACEVO lunch and listened to Oli Barrett, co-founder of the Connector Unit, push back on the suggestion that some problems are just too big to solve. The next day with my Director of Services, Helen McShane we had a meeting of minds and agreed it was time to go big or go home. So we asked two simple questions; “who are the ‘missing third’ and why are they missing?” You’d have thought we’d know. It became clear we didn’t.

So I stood in front of all my staff and said we need to hold off on the self-congratulatory praise for another good year. We are failing a third of people we are supposed to help. This is tough for a charity. ‘Failure’ isn’t a word we are comfortable with and admitting to a problem you don’t even understand let alone know how to fix does feel slightly ‘out there’.

Over the last few months we’ve been collating some solid evidence about why some children and young people probably don’t hear about CLIC Sargent. One of our hunches proved correct; young people aged 16-24 who are treated in adult hospitals are not being given access to age appropriate information and support, such as we and other charities could provide. We also dispelled some myths, like the 31% we don’t reach not having significant needs. This can’t possibly be true, given that most young people (92%) with bowel cancer – a really tough diagnosis – don’t get any help from us. We don’t reach 43% of children with brain tumours despite the fact it is our biggest cancer killer (18% won’t survive). In fact we have discovered that most of the missing 31% fall into just eight types of cancer.

Now we’re starting to understand the issues, we are planning a new approach. This includes persuading organisations like Bowel Cancer UK and Jo’s Cervical Cancer Trust, who have already agreed to meet with us, to work in partnership with us to connect us to young people with traditionally ‘adult’ cancers, work with the NHS and crucially opening up access to our services to self –refer so that young people and parents can find us even if we can’t find them.

Age appropriate specialist care and support should be a right of every child or young person diagnosed with cancer. I don’t want another 23-year-old sat on an adult ward with people twice their age thinking ‘What about me?’

So, I am personally calling on individuals and organisations across the sector to join our fight to get specialist care and support to everyone diagnosed with cancer under 25. If you’re a cancer charity, policy maker, influencer or NHS Cancer Alliance leads, please talk to me. I need your help.

Today we’re also launching a survey to hear from young people with cancer who are not or did not receive our support, or their parents. It may save lives, in more ways than one.

Transparency and being honest about your organisation’s failings is actually the easy bit. Committing to improve the situation and making ourselves directly accountable to users and donors for that improvement is the hard part. Having said that, it isn’t as hard as facing cancer without support when you’re 16.

Organisations wanting to get involved can email kate.lee@younglivesvscancer.org.uk.