Sam speaks out…


April 6th, 2011

A 14-year-old brain tumour survivor has told politicians how under-funding and new EU legislation are threatening the vital developments that saved his life.

Eighteen months ago, Sam White, from Newark, was given just an hour to live by doctors. After treatment at The University of Nottingham’s Children’s Brain Tumour Research Centre (CBTRC), Sam has defied both the experts and the odds. Although he still suffers from memory loss, Sam is back at school with extra support.

Sam met Gedling MP Vernon Coaker and East Midlands MEP Glenis Willmott when they visited the CBTRC at Nottingham University Hospital’s Queen’s Medical Centre (QMC).

After a tour of the research laboratories, the politicians were urged to support the All Party Parliamentary Group, which hosted the launch of a national manifesto on brain tumours last year.

Devised by the leading charities — Brain Tumour Research, Brain Tumour UK, International Brain Tumour Alliance and the Samantha Dickson Brain Tumour Trust — with whom CBTRC collaborates, the manifesto calls on the Government to work with them to ensure early diagnosis and treatment, best practice guidance for care and to increase Government investment in research.

CBTRC co-director David Walker, Professor of Paediatric Oncology, said: “March is Brain Cancer Awareness Month – the perfect time to be speaking to our local politicians and asking for their support in the campaign to address the inequalities which exist in Europe in treating and researching this life-threatening disease.

“Every year around 450 children are diagnosed with a brain tumour and it has overtaken leukaemia as the cancer which kills the highest number of young people. Brain tumours account for six per cent of all cancers yet receive less than one per cent of the national cancer research spending in the UK and we at the CBTRC are committed to redressing that balance.”

Compared to other parts of the world, research into children’s cancers and brain tumours is severely under resourced in Europe. The EU Clinical Trials Directive has created significant barriers to the initiation and conduct of clinical trials in children and has failed to deliver on speeding up the licensing of new drugs.

MEP Glenis Willmott said: “Funding for research into children’s brain tumours is of vital importance and without it we simply wouldn’t have excellent facilities like the CBTRC producing life-saving new therapies and advances in patient care.”

The laboratories are headed up by Richard Grundy, Professor of Paediatric Neuro Oncology and Cancer Biology, and have produced significant advances in diagnosis and treatment. This includes a better understanding of the genetics of rare types of brain tumours, why they may respond differently to treatment and offer varying prognoses for patients — work which was published in Nature and the Journal of Clinical Oncology.

Mr Coaker said: “Hearing that your child has cancer is every parent’s worst nightmare. Nottingham should be extremely proud that it is home to such a centre of excellence that is helping families through what is undoubtedly one of the most distressing experiences they will ever face.”

Sam’s mum, Pam, praised the staff at the CBTRC and Nottingham University Hospitals.

“If it wasn’t for the fact that we lived so close to these excellent facilities in Nottingham, Sam would not have stood a chance. Everyone has been fantastic — from the surgeons who operated on him that first night right down to the clinical psychologist who helped him overcome his fear of MRI scans.

“What has really made a terrific impact is having access to the latest drugs and treatments through clinical trials at the CBTRC, and for Sam, being treated with warmth and understanding, not just as a patient’”

Visit the CBTRC’s website: www.cbtrc.org.

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