I was diagnosed with a rare cancer in 2022, since then I have met other patients in the same situation.

With no body of evidence to support the development of treatments via NICE the NHS may not fund treatment that has been proven to work for other cancers so we may have to crowd fund, apply to charity, wait for clinical trials or beg to access life saving intervention. Alongside this we feel staff knowledge is scarce and poor creating high anxiety and sparse access to any help. This must stop.