This petition was submitted during the 2015–2017 Conservative government
Petition Urgent brain tumour scans, education for the public and health professionals.
At only 16, my daughter, Lucy Goulding tragically lost her life. Lucy died through lack of knowledge of brain tumours among health professionals and also myself. Lucy died due to an undiagnosed raised intracranial pressure (accumulation of fluid in the brain) due to the most benign brain tumour.
More details
Although being a rare cancer, the mortality rate due to brain tumours has increased over the past 13 years and kills more children than leukaemia or any other cancer. There is frequently reluctance among healthcare professionals to undertake a scan of children who may have a brain tumour until clinical signs become apparent – one of the reasons being that the initial symptoms of a brain tumour frequently mimic those that occur with many common childhood conditions. So referral time is critical.
This petition is closed This petition ran for 6 months
Government responded
This response was given on 9 June 2016
Improving early diagnosis of cancer is a priority for this Government, and was highlighted in Achieving World-Class Cancer Outcomes which was published in 2015 by the Independent Cancer Taskforce.
Read the response in full
We were really sorry to hear about Lucy’s death from a brain tumour.
Improving early diagnosis of cancer is a priority for this Government, and was highlighted as a strategic priority in the report Achieving World-Class Cancer Outcomes published last year by the Independent Cancer Taskforce. Earlier diagnosis makes it more likely that patients will receive effective treatments and the strategy noted specifically that more could be done to improve earlier diagnosis of brain tumours in children.
GPs in England see fewer than eight new cancer cases per year on average, but many more patients present with symptoms which could be cancer. In order to continue to support GPs to identify patients whose symptoms may indicate cancer and urgently refer them as appropriate, the National Institute for Health and Care Excellence (NICE) published an updated suspected cancer referral guideline in June 2015. The guideline includes new recommendations for brain tumours in adults and; children and young people. NICE also addressed generally, symptoms of concern in children and young people, recommending that GPs should take into account the insight and knowledge of parents and carers when considering making a referral for suspected cancer. NICE noted that more lives could be saved each year in England if GPs followed the new guideline, which encourages GPs to think of cancer sooner and lower the referral threshold.
Following publication of the updated guideline, the Royal College of GPs (RCGP) has worked in collaboration with Cancer Research UK (CRUK) on a programme of regional update events for GPs to promote the new guideline. RCGP and CRUK have also worked to develop three summary referral guidelines for GPs to enable them to adopt the guideline. The British Medical Journal published two summaries including one for children and young adults and Macmillan Cancer Support produced an updated Rapid Referral Toolkit. Summary guidelines and the toolkit are available on the Cancer Research UK website at: www.cancerresearchuk.org/health-professional/learning-and-development-tools/nice-cancer-referral-guidelines
In addition to the above, the Department of Health has highlighted the value of the HeadSmart awareness raising materials with Directors of Public Health, health visitors and school nurses, to encourage their use by professionals in signposting to specialist advice if needed. Information about the independent HeadSmart campaign can be found at www.headsmart.org.uk
We recognise that more research needs to be carried out if we are to reduce the significant disease burden caused by brain tumours. Therefore, the Minister for Life Sciences, George Freeman, will be convening a working group of clinicians, charities and officials to discuss how working together with our research funding partners, we can tackle the various issues raised by the brain cancer community to help increase the amount, and impact, of brain tumour research.
More generally, Cally Palmer CBE, the National Cancer Director is leading on the implementation of the strategy and has set up a new Cancer Transformation Board to lead the health and care system in implementing the Taskforce recommendations to save a further 30,000 lives a year by 2020. An implementation plan, Achieving World-Class Cancer Outcomes: Taking the strategy forward, was published on 12 May 2016. We hope to see great progress as it is delivered.
We have committed to implementing recommendation 24 of Achieving World-Class Outcomes that by 2020, everyone referred with a suspicion of cancer will receive either a definitive diagnosis or the all-clear within four weeks.
We have already seen a rise of over 25% in GP referrals for brain Magnetic Resonance Imaging, from over 31,000 in 2012-13 to over 50,000 in 2014-15. A new National Diagnostics Capacity Fund which will run over the lifetime of this strategy will support commissioners and providers to increase diagnostics capacity, including by testing new approaches to delivering diagnostic services and pathways. Once established, clinical and other leaders working together in Cancer Alliances will be able to determine how best to direct this national funding to best effect locally.
NHS England’s Accelerate, Coordinate, Evaluate pilots are exploring new models for delivering a diagnosis quickly and effectively, including piloting a multi-disciplinary diagnostic centre, which we hope will be particularly effective for patients with vague or unclear symptoms, although these pilots are primarily aimed at adults in the first instance. If successful, NHS England will work with Cancer Alliances to support wider roll out across the country in future years.
Further information about the strategy and the implementation plan can be found at www.england.nhs.uk/ourwork/cancer/strategy.
Department for Health
Related activity
Parliament debates brain tumour research
You may be interested to know that the Petitions Committee investigated a petition calling for more research into brain tumours. It published a report on the issue which contains its findings and recommendations for Government action. The report refers to the petition you signed calling for "urgent brain tumour scans, education for the public and health professionals" on page 17 of its report. You can find out more and read the report on the Committee's webpage:
http://www.parliament.uk/business/committees/committees-a-z/commons-select/petitions-committee/news-parliament-2015/brain-tumour-research-funding-report-publication-15-16/
Following its report, the Committee has scheduled a parliamentary debate on brain tumour research funding on Monday 18 April. The debate will begin in Westminster Hall at 4.30pm.
You can watch the debate live on the 18 April at 4.30pm using this page: http://www.parliamentlive.tv/Commons
You may wish to contact your local MP to tell them why this debate is important to you and suggest any points you would like them to raise. You can find out who your local MPs is, and how to contact them, here: http://www.parliament.uk/mps-lords-and-offices/mps/
You can find out more information about the debate on the Petitions Committee website: http://www.parliament.uk/business/committees/committees-a-z/commons-select/petitions-committee/news-parliament-2015/petition_debate_brain_tumour_research/
E-petition forces Government rethink on brain tumour research funding
The Government has responded to our report on funding for research into brain tumours which talked about this petition. Our report called for decisive action to tackle the historic underfunding of brain tumour research. It also included recommendations about diagnosis and awareness.
The Government has said:
• They agree that action is needed
• They agree that current funding for brain tumour research is not enough
• They have promised to create a group of experts (working group) to address the problem
You can read the Government's response on our website: www.parliament.uk/brain-tumour-research-response
What happens now?
We (the Petitions Committee) will continue to update you on what is happening. Our Chair, Helen Jones MP has said:
"The Petitions Committee warmly welcomes this positive response from the Government. We hoped that our report, which includes many of the deeply moving stories we heard from members of the public, would give them a louder voice. It seems that they have finally been heard.
The Committee will be keeping a close eye on the progress of the working group. The Government's commitment to take long-overdue action on brain tumour research funding, which has been neglected by successive Governments for decades, is of course very welcome.
However, it seems that the Government has not yet accepted some of our important recommendations. The response often speaks about Government action on cancer in general, without recognising one of the central messages of our report: that the complexities of brain tumours mean that they do not always benefit from general cancer research.
There are also several areas where the Government seems to have ignored the expert evidence heard by the Committee. These include: the evidence we heard about the difference between NICE guidelines for GPs and the more detailed guidance offered by the HeadSmart campaign; the challenges faced by young research scientists who want to pursue a career in brain tumour research; and the importance of explicitly taking account of the number of life years lost to a disease when determining research priorities.
The Committee will now want to work with the Government to make sure that our detailed recommendations are put into practice. Brain tumour patients and their families will be expecting real action, not just warm words, to come out of this process.
I would like to pay tribute, on behalf of the Committee, to the Realf family. With the support of Brain Tumour Research, they have campaigned tirelessly to bring this issue to Parliament. They have already done a huge amount to raise awareness among MPs—as have the many other members of the public who took part in the Committee’s inquiry and encouraged their MPs to speak in the debate on the petition. It is now up to the Government to ensure that their efforts have not been in vain."
Maria Lester, who started the petition said:
“I am pleased that the Government formally accepts that a greater level of brain tumour research is urgently needed. As the Petitions Committee's excellent report points out, brain tumour patients have been failed for decades, and I hope that this response is an important step towards positive change. I would like to personally thank the Committee and the charity Brain Tumour Research for helping to raise awareness of this issue on a national level.
Brain tumours are the biggest cancer killer of children and the under 40s, and it is vital that the Government takes into account the number of life years lost when prioritising research spend.
I look forward to seeing what the working group suggests - and I hope that the Government's encouraging words will translate into meaningful action.
It may be too late for my brother Stephen, but it is never too late to make a difference.”