Samantha Dickson Brain Tumour Trust

There was a great turnout for the Brain Tumour Summit today, which SDBTT staff and supporters attended (some of whom are pictured above with our Manifesto – improving outcomes for everyone affected by a brain tumour) as part of our role as a founder member of the Brain Tumour Consortium.

The Summit also officially launched Brain Tumour Awareness Month, which runs for the whole of March.  Find out more and ways to get involved.

Highlights included:

Professor David Walker talking about HeadSmart, how it started, why it’s so important and the progress the campaign is making:

• Earlier diagnosis will both save lives and reduce long term disability for children. 60/65% of those diagnosed in children will go on to lead adult lives, so disability is an enormous burden for the NHS.
• Feedback from paediatricians and GPs shows the HeadSmart website is welcomed, and is helping to reassure as well as to give guidance on referring for a scan.
• GPs perceive it takes 3 months to diagnose a brain tumour. Need to change this perception to one month – then we will see a difference.

SDBTT supporter Sacha Langton-Gilks shared her story with the room and how, if she’d had a HeadSmart symptoms card, she’d have been able to recognise the signs sooner for her son.

• Earlier diagnosis may have avoided a permanent brain shunt and 7 of his brain operations.
• She asked everyone to get involved helping us get a symptoms card into every household, school, nursery, GP surgery, SureStart centre and to all healthcare visitors and childminders in the UK.
• If you can help distribute cards, email us at info@headsmart.org.uk

Professor Garth Cruickshank looking at best practice guidance, the need to avoid a postcode lottery and what success would look like:

• The role of the Multi Disciplinary Team and Clinical Nurse Specialists is crucial to improve outcomes.
• In Birmingham 85% of adults are referred via A&E which is a shocking statistic.  Most had seen their GP very recently.
• It’s cheaper to scan an adult to get an accurate diagnosis than 2 visits to a GP.  Only 5-6% will be abnormal and not all of these will be brain tumours.

Professor Roy Rampling spoke passionately about the need for more research.

• Only 10% of brain tumour patients are enrolled in a clinical trial and there are only 16 trials open in the UK v 185 in the USA
• Brain tumour research spend was £4.5m last year – in the USA it was $100m.
• Brain tumour research receives less than 1% of cancer research funding.

If you’d like to find out more or get involved with our campaigning work, especially during Brain Tumour Awareness Month this March, simply drop us a line to enquiries@sdbtt.co.uk or call us on 01252 749990.