Our latest report - published last month - highlights a devastating picture of delays and inequality for people with Lynch syndrome and their families. But what is Lynch syndrome and why are so many people being failed?
Caused by a fault in a group of genes known as 'mismatch repair' genes - Lynch syndrome leaves people at dramatically greater risk of developing bowel cancer. In fact, their risk can be as high as 80%, and they're also at higher risk of other cancers like womb, stomach and ovarian.
Whilst this alone is certainly going to be worrying, having Lynch syndrome also means there's a 50:50 chance your children and other relatives will have it too. And cruelly, that's why its impact can often span many generations.
One of the big problems is most people don't actually know they have the condition. And why would they? There are no symptoms and there's a real lack of testing across the board. But there are some tell-tale signs - like having bowel cancer at an early age and a family history of Lynch-related cancers - which should start to raise alarm bells.
Image used with Caroline's permission
Unfortunately initial suspicion of Lynch syndrome is only the first hurdle. At what is already likely to be a stressful and uncertain time many patients face an agonising wait for testing and answers. Sadly, I regularly hear stories like Caroline's - that remind us we've still got a long way to go:
'In total, the whole process from referral to receiving my diagnosis took 15 months. Having bowel cancer is stressful enough and it's not helpful having to chase health professionals.
I had never heard of Lynch syndrome, but it highlighted my family history. My mum died of ovarian cancer, her mum died of bowel cancer, my mum's brother died from cancer in the liver, mum's sister died from ovarian cancer and my mum's other brother died from lung cancer.'
For many, like Caroline, finally being told you have Lynch syndrome can come as a relief. After such a long period of uncertainty, Caroline told us she felt 'very lucky' to know she had the condition. The diagnosis helped explain so much for Caroline's family and importantly means her young daughters won't have to go through the same journey.
There's no cure for Lynch syndrome, but knowledge really is powerful - knowing you have the condition means you can take steps to reduce the risk of bowel cancer. This will likely come in the form of preventative surgery or surveillance - meaning the bowel is regularly examined by colonoscopy.
Taking these steps can help detect bowel cancer early - when it's easier to treat - or even stop it developing in the first place. This can be life changing for patients, yet bottlenecks in the system and huge variation across the country mean some patients are left slipping through the net.
To ensure everyone with Lynch syndrome has access to the best quality care at each step of the process, things urgently need to change. A more coordinated national strategy for Lynch syndrome testing, management and surveillance could not only mean a more reliable pathway for patients and their families, but could ultimately save lives.
And that's why it's so crucial that the UK's Health Ministers step up and take responsibility. Help us raise the pressure and create change by signing our petition.
