On the eve of Brain Tumour Awareness month: MPs demand action to make brain tumour research a “critical priority”, as two landmark reports are published highlighting challenges in NHS treatment, care and research.

Brain tumour patients, their families, charities, and scientists have welcomed two reports demanding urgent action to help those affected by brain tumours, which kill more children and adults under the age of 40 than any other cancer.

The All-Party Parliamentary Group on Brain Tumours (APPBGT) calls for wide-ranging changes to be made in how research into the disease is funded in its latest Inquiry Report Pathway to a Cure – Breaking Down the Barriers.  The Tessa Jowell Brain Cancer Mission (TJBCM) report Does It Matter Where You Are Treated builds on these findings, revealing variations in NHS treatment and research and proposing innovative solutions for hospitals to implement.

Published today <28 February>, on the eve of national Brain Tumour Awareness Month, the reports will be launched at a Westminster reception hosted jointly by Brain Tumour Research and the Tessa Jowell Brain Cancer Mission.

The APPGBT report calls out the current funding system as unfit for purpose and claims patients and families continue to be let down despite the promise of millions of pounds of investment which has not materialised. It raises issues in the treatment of terminally ill children denied access to last resort clinical trials despite their parents’ wishes. Also highlighted is a so-called “valley of death” in which potential new treatments discovered in the laboratory fail to reach patients because of unnecessary complexity in the way research is funded.

Key recommendations of the inquiry include:

• The Government should recognise brain tumour research as a critical priority, ring fencing £110 million of current and new funding
• The research funding system has been built in silos and needs to be joined up from basic science through to clinical trials. Patients with brain tumours should have equity of access to trials of new anti-cancer drugs
• Funding bodies should ring-fence specific funding for research into childhood brain tumours where survival rates for the most aggressive tumours have remained unchanged for decades leading to frustrated families seeking costly and unproven treatment abroad

  The Mission’s report echoes the need to address challenges in brain tumour research and further describes national variations and gaps in treatment and care. Encouragingly, the report also identifies and describes pockets of excellence found in centres and sets out recommendations to address the challenges which have already begun to be implemented by the community. The report recognises a hard-working and dedicated workforce which goes above and beyond for its patients. In its totality, the report presents the most comprehensive dataset on NHS brain cancer services ever collected and provides the TJBCM with a unique strategic overview on how to drive change and innovation nationally.

  The Tessa Jowell Brain Cancer Mission designs and delivers a transformational portfolio of programmes in the heart of the NHS to improve brain tumour treatment, care and research. It was founded in partnership with the DHSC and all the national brain tumour charities in 2018 in response to the late Baroness Jowell’s campaign to innovate NHS brain cancer services, as she herself was dying from the disease.

  Brain Tumour Research funds sustainable research at dedicated centres in the UK. It provides the secretariat for the APPGBT and also campaigns for the Government

  and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.

  QUOTES:

  Derek Thomas MP, who chairs the APPGBT, said: “A total of £40 million in investment has been promised since 2018*. This gave cause for optimism and heralded a very welcome shift in focus especially considering the historic underfunding of research into brain tumours which has received just 1% of the national spend on cancer research since records began.

  “However, our investigations have revealed a concerning lack of deployment of these funds with just £15 million reaching the hands of researchers in the five years since it was promised. We are hearing that the current system is too complicated, it doesn’t connect laboratory work with what is happening in clinics, that there is no up to date and robust database for people to understand if they could be eligible for clinical trials and that far too little of the money previously promised has reached the hands of the researchers who can make a difference.

  “The sad fact is that brain tumour patients do not have the luxury of time. The Government must act now in order to recognise brain tumour research as a critical priority, appoint a champion, and ringfence sufficient funds to make a difference.”

  Sue Farrington Smith MBE, Chief Executive of the charity Brain Tumour Research, said: “Brain tumours are a uniquely complex disease, and we must recognise this with a unique response. Survival rates for brain tumour patients have remained unchanged over recent decades and, despite improvements in neurosurgical techniques, supporting care, and more refined imaging and molecular diagnostics, we are yet to see the upward trajectory of other malignant diseases such as breast cancer and leukaemia.”

  Dr Nicky Huskens, TJBCM Chief Executive Officer said: “The publication of these two reports is a significant moment for the brain tumour community, covering both the research landscape and the NHS treatment and care services currently available to patients. The APPGBT has made some hard-hitting recommendations on how to improve treatment options while the findings in our report really helped the Mission to focus its efforts on where further work is needed to continue to improve the patient experience and research access.”

  Ms Jess Mills, TJBCM co-founder and daughter of Baroness Tessa Jowell said, “The publication of these reports is a profound moment of reflection for us all.  It also marks five years since the Tessa Jowell Brain Cancer Mission was formed, when my Mum, who was dying from brain cancer herself, laid out her transformational vision for how NHS Brain Cancer Treatment and Care needed to change.  Her vision created the blueprint for the Tessa Jowell Brain Cancer Mission: to ensure that every patient of today has equitable access to excellence and the cutting edge of innovation in their local hospital, whilst paving the way to making brain cancer treatable for the future. This report holds something completely unique in the UK - the details of the real current picture of NHS Brain Cancer Services, but most excitingly, the potential of the picture of the future, where, as my Mum dreamed, the very best and latest science will be available to all.”

  Among those welcoming the reports was Louise Fox from Bedfordshire who lost her son to an aggressive glioblastoma (GBM) brain tumour in April last year.

  “We lost our brave, inspiring son George at the age of 13 to GBM and simply cannot understand why, in this day and age, so few treatment options are available for this horrific disease.

  “At the moment families like ours have no other option than to try to raise huge sums of money, in our case more than £300,000, to give our precious boy a chance. When we exhausted treatment options in the UK we managed, against the odds, to get treatment in the US but we were fighting a losing battle. George became dangerously ill on the flight and had to go straight into surgery. By then he was too poorly to take part in the trial,” she said.

  “We fought for George as hard as we could. Now, despite our loss, we continue to fight in the hope it will help other families in the future. We are activists in a world we never wanted to be part of because it is what George would have wanted. Despite, and perhaps because of, the horror of never seeing our son grow into a man we will never stop trying to make a difference for future young brain tumour patients.”

  -ENDS-

  For further information, please contact:

  Sue Castle-Smith Head of PR & Communications at Brain Tumour Research on T07887 241639 or susan@braintumourresearch.org

  For the Brain Cancer Mission: Nicky Huskens, CEO of the Tessa Jowell Brain Cancer Mission 07825573249 nicky.huskens@tessajowellbcm.org

  Notes to Editors

  *In 2018 the Government promised a £40 million investment in brain tumour research. £20 million of this was announced following recommendations in a Task and Finish Working Group convened by the then Health Minister George Freeman. A further £20 million was announced on the death of Dame Tessa Jowell. The total of £40 million was to be made available from the National Institute for Health Research.

  (NIHR) funding. Five years later there are no new treatments and five-year survival for patients is still just 12%.

  Brain tumours kill more children and adults under the age of 40 than any other cancer yet, historically just 1% of the national spend on cancer research has been allocated to this devastating disease.

  Key statistics on brain tumours:

  • Brain tumours are indiscriminate; they can affect anyone at any age
  • Brain tumours kill more children and adults under the age of 40 than any other cancer
  • Historically, just 1% of the national spend on cancer research has been allocated to brain tumours
  • One in three people know someone affected by a brain tumour
  • In the UK, 16,000 people each year are diagnosed with a brain tumour
  • Brain tumours kill more children than leukaemia
  • Brain tumours kill more women under 35 than breast cancer
  • Brain tumours kill more men under 70 than prostate cancer
  • Less than 12% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers

Please quote Brain Tumour Research as the source when using this information. Additional facts and statistics are available from our website. We can also provide case studies and research expertise for the media.