In October, Clic Sargent produced its 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 was that, yet again, we failed to increase our reach, which meant that for another year some 1,000 or so children and young people with cancer did not get any of the specialist social care support that Clic Sargent uniquely provides.
Each year for the past six years Clic Sargent has been reaching about 69 per cent of all children and young people diagnosed with cancer. Our reporting systems, impact statistics and experience data tell us that we have a significant impact, of which we are incredibly proud .
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 reaching only "two out of three" as a key fundraising message.
It’s a mantra everyone in the organisation knows. It was in our 2015 strategy, it was in my chief executive 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. I had a meeting of minds the next day with my director of services, Helen McShane, 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 needed to hold off on the self-congratulatory praise for another good year. We were failing a third of people we are supposed to help. This is a tough thing for a charity to admit. "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 past few months we’ve been collating some solid evidence about why some children and young people 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 per cent we don’t reach not having significant needs. This can’t possibly be true, given that most young people (92 per cent) with bowel cancer – a really tough diagnosis – don’t get any help from us. We don’t reach 43 per cent of children with brain tumours despite the fact that it is our biggest cancer killer (18 per cent won’t survive). In fact we have discovered that most of the missing 31 per cent fall into just eight types of cancer. You can read more in our report.
Now we’re starting to understand the issues, we are planning a new approach. This includes persuading organisations such as Bowel Cancer UK and Jo’s Cervical Cancer Trust, which 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, open 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 people and organisations across the sector to join our fight to get specialist care and support to everyone diagnosed with cancer who is under 25. If you’re a cancer charity, policy-maker, influencer or NHS Cancer Alliance lead, 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 might save lives, in more ways than one.
Transparency and being honest about our 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.
Kate Lee (Kate.Lee@clicsargent.org.uk) is chief executive of Clic Sargent