Brain Tumour Consortium Spring Summit, London

Brain Tumour Consortium Spring Summit 2012

There was a great turnout on the eve of Brain Tumour Awareness Month at the Brain Tumour Consortium Spring Summit in London on 29 February 2012.

Brain tumour charities, including Brain Tumour UK and The Joseph Foote Trust, researchers, clinicians and patients assembled to discuss and debate a variety of issues affecting the brain tumour community.

Professors David Walker, Garth Cruickshank, Roy Rampling and Geoff Pilkington were the invited speakers on research, diagnosis, treatment and the political environment affecting brain tumour patients. Patient representatives also spoke, each bringing a profoundly moving and human perspective to the issues.

Professor David Walker at the Brain Tumour Consortium 2012Professor David Walker from the Children's Brain Tumour Research Centre, to which The Joseph Foote Trust is a key contributor, took to the floor first to report on the successful early diagnosis campaign 'HeadSmart'. Professor Walker said definitive evidence that the HeadSmart website was assisting health professionals to recognise brain tumour symptoms in children is now starting to emerge. However, it still takes an average of three months from the onset of symptoms to the confirmed diagnosis of a brain tumour. If this could be improved to one month, then we might see a dramatic improvement in survival statistics and recovery outcomes.

Sacha Langton-Gilks, whose 11-year-old son underwent treatment for a brain tumour, followed Professor Walker with a heartfelt plea for the group to continue the campaign to improve the speed with which brain tumours are diagnosed. She believes her son would have experienced reduced after-effects from his treatment had he been diagnosed earlier. She talked about her passion for raising awareness of the HeadSmart campaign in the hope that other children will receive treatment more promptly, and have a better quality of life as a result.

Professor Garth Cruickshank at the Brain Tumour Consortium 2012Professor Garth Cruickshank, whose team at Queen Elizabeth Hospital in Birmingham receives significant support from Brain Tumour UK, spoke about best practice and his doubts that the new Health & Social Care bill can deliver it to UK brain tumour patients. He too highlighted early diagnosis as a concern, presenting statistics indicating that 85% of brain tumour diagnoses are made at A&E when people arrive experiencing acute symptoms such as a seizure. The figures show that these patients have often already visited their GP several times with less severe symptoms. He touched on the issue of screening, pointing out that the cost of a scan is less than twice the cost of a GP visit, and there is a definable statistical likelihood of discovering brain tumours in a significant number of people who have no visible symptoms, if you scan a large enough group. He said more work may uncover a good case to make to Government for increased access to scans.

Joannie McCutcheon at the Brain Tumour Consortium 2012Joannie McCutcheon from Scotland followed Professor Cruickshank, recounting her own experience of multiple brain tumours, and her belief that brain tumour charities have an important part to play in delivering the best possible support to those affected by a brain tumour diagnosis.

Professor Roy Rampling at the Brain Tumour Consortium 2012Professor Roy Rampling spoke about the steps that must be taken to secure more funding for brain tumour research. He stressed his feeling that there are too few clinical trials available for brain tumour patients in the UK, with only 16 open as opposed to 185 in the USA. He made an impassioned plea for increased co-operation between brain tumour charities to maximise the amount and quality of funding available for brain tumour research.

Dr Vetri Velamail, a GP from Rotherham, told his story of being diagnosed with a brain tumour, his efforts to raise awareness amongst his colleagues and raise funds for research.

A panel discussion concluded the summit. Professor Geoff Pilkington asked that we remember the independent scientists conducting vital work when we devise research-funding strategies. He said these scientists play a vital part in the fight against the disease.

You can read more about the Brain Tumour Consortium here.

Brain Tumour UK had 15 representatives at the summit, and we welcome participation from anyone that has an interest in these issues. If you would like to hear about future events, receive invitations to them, and work with us to increase awareness, please get in contact with us.