We’re launching The Big Survivorship Survey, with the aim of building the best picture yet of the standard of care for survivors of childhood brain tumours post cure and beyond, and we’re appealing for anyone with experience to take part in a short survey.
The medical profession has been brilliant at treating brain tumours in children and young people for the last 20 years – 80% are “cured”, but most patients are left with unseen health and developmental issues.
This is where survivors and their parents/carers are often left to fight for access to the specialist care they deserve during and beyond cure. We are asking for your assistance to help us find these survivors, their parents and carers.
“Success Life After Cure” has been championing a recovery pathway, equal and parallel to that for cure, and we’re starting to make progress – it’s been endorsed by an increasing number of leading clinical colleagues.
We estimate there are some 40,000 individuals who are living with the effects of a brain tumour diagnosed before their 25th birthday in the UK at the moment. We need to reach and hear from as many as possible as we reach a critical stage in our work to help and support as many survivors as possible.
We want to hear about their experience, at whatever stage they are in their brain tumour journey.
This will inform our work with NHS England to adopt our recovery pathway as standard care from tumour diagnosis and for as long as it is needed thereafter, something that we believe every patient, whoever and wherever they are in the country, deserves by right as part of their ‘cure’.
