The worst time to be ignored?

When I joined CLIC Sargent as CEO, lots of my friends said “I couldn’t work with children and young people with cancer – I would just get too upset” (they said that when I went to the hospice as well – sucker for punishment). Well, I started in December and so far so good.  I have met lots of young people and children and some stories are very sad, but also inspiring and what they drive is a passion for the work.  The stories that have affected me most, however, are the stories of parents, who have just felt beyond helpless and hopeless as a result of their child’s diagnosis. 

Today CLIC Sargent is launching its new policy report “The Best Chance from the start” It makes pretty uncomfortable reading for any mum or dad as well health care professionals. The report looks at the journey parents of children 0-16 and young people aged 16-24 go through before they get their cancer diagnosis.  

30% of parents had to visit the GP 3 or 4 times before they were referred for the tests that confirmed their child’s cancer diagnosis.

As a mum of a 9-year-old boy and 13–year-old girl, that was the first thing that made me squirm. That is 3 or 4 times I’d have to sit in that GP surgery feeling like a bit of a fraud, reading posters about being a drain on the NHS.  For young people it is even worse, 25% went over 5 times, right at that point in your life when you are not necessarily sure of anything very much and are likely to trust a doctor’s judgement without question.   I know a good friend’s mum threatened to camp out in the GP surgery unless her 23 year-old daughter was referred for tests for a breast lump that was causing her pain. Sadly her cancer was diagnosed way too late to be treated. I’d like to think I’d be that mum, but the symptoms of childhood cancer are not as obvious and it remains, thankfully, extremely rare – and I don’t want to be judged with the worst label of all in the village surgery – “hypochondriac (aka: neurotic) mother”.

This being said, I know when my kids are not right; I just know. I have had years of differentiating between true sickness and “get out of PE” disease.   So, I am giving myself the credit to think that I would battle on, with my average 3-4 GP visits. So what about if the thing I find it hard to really even consider happens and my child gets a cancer diagnosis?  Well, what CLIC Sargent’s research shows is that 50% of the parents we surveyed felt that the late diagnosis affected their child’s prognosis and their long-term outcome.  We don’t know that for sure, because despite the money that has been spent understanding the impact of late diagnosis for adults, very little has ever been done for childhood cancers.  What we do know, because parents and young people regularly tell us, is at a time when they should be focusing on their treatment, they are angry at not being listened to, mistrusting doctors will listen to them now and often very, very guilty that they could have shouted louder, pushed harder.

So what do I want as a parent?

I want to know that if I tell a GP my child isn’t right they will listen and if my future 18–year-old daughter says she isn’t right it won’t be chalked up to too much partying and puberty if she says it isn’t.  I want to be listened to.  I want a GP who knows that cancer, however rare, is a possibility.  My GP will know what simple tests can be done, quickly and efficiently to rule some stuff out.   I want my GP to have access to specialists they can call to chat my case over, to help me feel like, although it may take time, they are taking me seriously – if it is the worst I can probably live with that.  What CLIC Sargent wants is more research into understanding the physical impact of a delayed diagnosis – so that like with adults we have the evidence to strengthen the system to get the same childhood cancer survival rates as the rest of Europe. AND whilst we really don’t want any child or young person to ever get a cancer diagnosis, when they do they will be focused on being strong for the future, not angry and guilty about the past.

Find out more about CLIC Sargent’s The best chance from the start campaign and support our calls for change in the health and care system: www.clicsargent.org.uk/bestchance