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Experts in children’s brain tumours have today welcomed an historic parliamentary report which says funding for brain tumour research is inadequate in the UK and not given sufficient priority.
Professor David Walker and Professor Richard Grundy gave evidence to a Petition’s Committee inquiry last autumn after a petition organised by the sister of a brain tumour victim raised more than 120,000 signatures. Walker and Grundy are Co-Directors of the Children’s Brain Tumour Research Centre at The University of Nottingham and Nottingham University Hospitals NHS Trust.
The Petitions Committee, of 11 cross-party MPs, has today published its final report ‘Funding for research into brain tumours’ revealing the distressing experiences of people whose lives have been affected by the disease, as well as exploring the reasons behind the historic under-funding of research under successive governments.
This is the Committee’s first ever report and the successful petition now means the issue will be the subject of a debate in parliament.
The Committee took evidence from families and clinicians on diagnosis and awareness of the condition, as well as on current funding levels, research priorities and the challenges facing brain tumour charities.
The report calls for the Government to give a clear statement of whether it believes that current levels of funding are adequate, and if not, asks what it will do to ensure that funding for brain tumour research increases. It also says the prioritisation of research funding should not be left solely to the voluntary sector and the Government should take a more active role in meeting unmet needs in research funding considering the burden of this disease.
Reacting to the report, Professor David Walker said: “At Children's Brain Tumour Research Centre at The University of Nottingham we recognised in 1997 the absence of priority to research in this area and launched our local fundraising initiative to develop research infrastructure and raise awareness within our cancer translational research programme at the University and the Queen’s Medical Centre Campus of the NUH NHS Trust. Brain tumours are now a central and highly valued part of that strategy. We have established a pioneering centre currently consisting of nearly 60 clinical and scientific specialists investigating issues related to brain tumour in children and young people.
“It is gratifying to see that the recent petition has highlighted this area for further prioritisation in 2016 and that the report recognises the impact of brain tumours across all ages as a major cause of human disease, especially in early life, which threatens survival and promotes serious disability.
Professor Richard Grundy, Co-Director of the Children’s Brain Tumour Research Centre, added: “A key element is further funding to develop our understanding of the underlying biology of the disease. With that knowledge we could to develop personal treatment strategies for patients that have less damaging consequences and reduce the potential of life-changing disabilities that many patients are left to cope with following current therapies.”
The Children’s Brain Tumour Research Centre has today outlined the greatest challenges in Paediatric Neuro-oncology:
- To reduce the death rates in the resistant childhood tumour types (Diffuse Intrinsic Pontine Glioma DIPG / atypical teratoid rhabdoid tumour / ependymoma / high grade glioma) by searching for new targets for treatment.
- To reduce the harm of the current treatments on the brain and other organ systems by delivering new treatments directly to the brain tumour, by-passing the blood brain barrier by researching into personalised drug delivery techniques.
- To reduce the global harm to the patients’ brain by accelerating diagnosis, we designed and launched the HeadSmart Campaign (www.headsmart.org) and identified and devised strategies to prevent serious brain injury such as cerebellar mutism and blindness associated with brain tumours.
- To support the development of clinical trials of novel therapies as the way to deliver enhanced outcomes to the patients as we treat them.
Professor Walker added: “We have consistently worked closely with our patients and those who share the challenge of raising awareness of the needs of the children and young people who experience brain tumour and have to live with the threat to their lives and consequences of their illness and its treatment for the rest of their lives.
This petition highlights significant priorities for Government and we would welcome a visit to demonstrate the type of development that can be generated, focussing on this area. Our experience is unique in the UK, we are one of a growing network of brain tumour research centres globally.”
The Committee heard moving examples of the difficulty that patients had had in being diagnosed with a brain tumour, as well as clinical evidence on the challenges involved in identifying the condition early. It recommends that measures be immediately taken to increase awareness amongst health professionals of the symptoms of brain tumours. The report concludes: “Patients with brain tumours are failed at every stage — from diagnosis and treatment to research funding, placing the onus on the Government to take remedial action to correct decades of under-funding.”
Helen Jones MP, Chair of the Petitions Committee, said: “The Petitions Committee’s first report makes clear recommendations to the Government about the lack of funding for research into brain tumours. As part of this inquiry we heard testimonies both from victims of this terrible disease, and from clinical specialists working in the area. The evidence was clear — something must be done to improve outcomes for patients, and barriers to research must be removed. This report was initiated by the public; it is a vitally important issue and I hope the Government takes our recommendations seriously.”
Maria Lester, who started the petition with the support of the charity Brain Tumour Research, said: “Brain tumours are the biggest cancer killer of people under 40, and it is vital that funding for research is swiftly increased. I welcome this important report by the Petitions Committee, and would like to thank its members for the care and hard work that has gone into compiling it. The evidence makes for powerful reading, and I hope that it will pave the way for fast and meaningful action. I would urge the Government not to turn a blind eye, but to look at ways in which the UK could become a world leader in brain tumour research. It may be too late for my brother Stephen, but it is not too late to save others from this cruel disease.”
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