All-Party Parliamentary Group on Brain Tumours - December 2016
As 2016 comes to a close, members of the All Party Parliamentary Group (APPG) on Brain Tumours and the brain tumour community gathered on 14th December to hear about the progress of the Government’s Task and Finish Working Group on brain tumour research.
The Working Group was set up following the Petitions Committee debate into their inquiry and subsequent report; ‘funding for research into brain tumours’. The group met for its inaugural meeting at the headquarters of the Department of Health in October. Comprising of clinicians, researchers, charities, Government officials and patient representation, the group will be addressing the need to increase the level and impact of brain tumour research.
Rebecca Harris MP, Chair of the APPG opened the APPG meeting by noting that this year has seen extraordinary leaps forward in our community’s fight against this devastating disease. It started with the collection of over 120,000 signatures in support of the Realf family’s petition. Other milestones included the launch of the Petitions Committee’s inquiry and the convening of the Government’s Task and Finish Working Group, none of which could have been possible without the support of our community’s many activists, supporters and patients’ families.
Read more over on our blog.
Download our briefing to Parliamentarians from the meeting, "Accelerating the rate of progress in brain tumour research", here.
Accelerating the rate of progress in brain tumour research
At the current rate of spend, it could take 100 years for brain tumour research to catch up with developments in other diseases and find a cure.
Our latest briefing to Parliamentarians, 'Accelerating the rate of progress in brain tumour research', described how the Government established a Task & Finish Working Group into brain tumours in response to our national campaign to increase research funding.
It then explained that, in order to accelerate progress in brain tumour research, action needs to be taken in three key areas:
1) Develop a network of brain tumour research centres
2) Tissue banking
3) Drug development
We will seek to hold the Government to account in reversing the historic underfunding of brain tumour research.
Charities and Government working together on brain tumour research
Tuesday 18th October was a milestone in our battle against brain tumours. It saw the inaugural meeting of the Government’s Task & Finish Working Group on brain tumours, which was established after a Parliamentary debate in April 2016.
Maria Lester’s e-petition (which so many of you reading this will have signed), the resulting inquiry undertaken by the House of Commons Petitions Committee and the subsequent debate in Parliament were responsible for the establishment of the Group.
This meeting would never have taken place without our member charities speaking with one voice and galvanising their communities to stand up and make a difference. We unified the voice of a community that, according to the House of Commons Petitions Committee, had been “failed by successive governments” and our clarion call culminated in action that has made, and will continue to make, a difference for those diagnosed with this devastating disease.
Read more over on our blog.
All-Party Parliamentary Group on Brain Tumours - July 2016
As Westminster welcomed Britain’s second woman Prime Minister on Wednesday, The All-Party Parliamentary Group on Brain Tumours and members of the brain tumour community met in the heart of Parliament.
The APPG meeting reviewed the landmark success of this year’s Petitions Committee inquiry into brain tumour research funding and discussed how the new Government can take forward their recommendations in the year ahead.
Chair of the APPG on Brain Tumours, Rebecca Harris MP, remarked: “The last year has seen the profile of brain tumours raised in response to the absolutely stunning petition into brain tumour research which attracted over 120,000 public signatures and secured a fantastic debate in Westminster Hall.”
Read our full write-up over on our blog.
Tackling the historic underfunding of brain tumour research
Our Tackling the historic underfunding of brain tumour research briefing to Parliamentarians called on the government to work with Brain Tumour Research to increase investment for research into brain tumours.
Brain tumour research needs to be at the same level as cancers such as breast and leukaemia in order to see the same advances in treatments.
Following an e-petition signed by 120,129 people that called for £30 - £35 million per year to be invested into brain tumour research, the Government agreed that:
1) More action was needed for brain tumour research
2) Current funding for brain tumour research was not enough
3) A group of experts (working group) would be created to address the problem
We will continue to work with Parliamentarians and the Government to increase brain tumour research funding!
All-Party Parliamentary Group on Brain Tumours to discuss the under-funding of brain tumour research
The All-Party Parliamentary Group on Brain Tumours will hold its Annual General Meeting on Wednesday 13th July in Committee Room 16 of the House of Commons, from 2.30pm - 4.30pm.
The meeting will review the successful Parliamentary e-petition, the government's response and the views of specialist brain tumour researchers.
It is important to have as many MPs as possible attend the meeting. Support from politicians is vital in raising awareness of the devastating impact of brain tumours and the pressing need for increased research funding.
URGENT ACTION: Please can you urge your MP to attend the APPG meeting on Wednesday 13th July and let us have their response.
You can find out your MPs name and email address here.
If you get a response from your MP please forward this to: email@example.com (this tells us which MPs will attend!)
We've drafted a template email to MPs (please see this in italics below), feel free to tailor as appropriate and don’t forget to include your address as proof that you are a constituent of theirs!
Dear <MP name>
Tackling the historic under-funding of brain tumour research
Helen Jones MP, Chair of the Petitions Committee will be speaking at a brain tumour All-Party Parliamentary Group meeting organised by the charity Brain Tumour Research on Wednesday 13th July 2.30 to 4.30pm
The meeting will be held in Committee Room 16 and will include the Annual General Meeting (AGM). The AGM will start at 3.00pm followed by Helen Jones and other Speakers.
Helen will share the progress of the e-petition started by Maria Lester and the Realf family in August 2015, through to the Inquiry and publication of the Petitions Committee report and Westminster Hall debate on 18th April.
The Government have responded and Helen will outline how the Committee will now work with the Government to make sure that their detailed recommendations are put into practice. As the Committee have stated ‘Brain tumour patients and their families will be expecting real action, not just warm words, to come out of this process’. https://petition.parliament.uk/petitions/105560
You will also hear from the family who started the e-petition and Professor Tracy Warr from the University of Wolverhampton.
This subject is very important to me because <tell your story>
I thank you for your support to date and I trust you will be able to attend. Please let me know if you will be able to attend.
<your name and address>
Brain tumour debate is an outstanding success and campaigning milestone as the UK Government acknowledges more must be done for brain tumour patients.
The UK Government has formally acknowledged during the first brain tumour debate prompted by the Petitions Committee Inquiry that more needs to be done for brain tumour patients and their families.
Health Minister George Freeman MP announced a package of measures at a Westminster Hall debate on Monday 18th April which was prompted by an e-petition launched by the family of Stephen Realf, lost to a brain tumour at the age of 26, and backed by Brain Tumour Research.
He said the Goverment will now:
Establish a 'Task and Finish' working group at the Department of Health. This will be a special project team who will conduct an in-depth review of the key areas and recommendations set out by the Petitions Committee in their report.
He will request that the National Institute for Health Research (NIHR) produce a national register within a year to examine how public funds are spent on research. This will examine spending on different disease areas and different organs, including the brain, by the different treatments used.
To seek to improve levels of earlier diagnosis and include brain cancer in the Genomics England programme.
Our Chief Executive, Sue Farrington Smith, who lost her niece Alison Phelan to a brain tumour just before her eighth birthday, said: "I am immensely proud that, with the support of thousands of patients, families and activists, the woeful underfunding of this dreadful disease has now been acknowledged. Finally, our voices have been heard and the work of the past 15 years has not been in vain.”
Where can I see a list of the MPs who attend and contributed to the debate?
The names and contributions of MPs is available in Hansard, the official report of all proceedings that take place in Parliament. Anyone can view these reports online and read what their MP had to say in the debate.
Unlike a lot of debates that take place in the main chamber, there was no vote at the end of this debate so there is no official record of MPs who attended but did not personally contribute.
My MP was there but they didn’t speak, why?
Westminster Hall debates of this kind are only allocated three hours and it is the role of the Chair to fit in as many speakers as possible but sometimes not everyone gets a chance to speak.
If your MP has a Ministerial role they are not normally allowed to contribute to a debate. George Freeman MP, Health Minister for Life Sciences, spoke for the Government at this debate.
The Minister said that the Government and Department of Health will review the progress made on the national register at next year’s NIHR Parliament day. We will continue to hold them to account on their other commitments too.
Thank you to everyone who urged their MP to attend. Together we will find a cure.
Petitions Committee Debate – 18th April 2016
The House of Commons Petitions Committee launched their report on 14th March highlighting the failure of successive governments on funding for brain tumours research. This is a very exciting milestone for brain tumour research funding in the UK.
This issue of funding for brain tumour research will now be debated in Parliament on 18th April 2016.
We need as many MPs as possible to join this debate. Please take action today and write to your MP using this letter template, adding your own story where indicated.
If you are unsure who your MP is, you can use this page on the Parliament website to find their details.
It’s the job of MPs to raise issues of concerns for their constituents – they are accountable to you!
You can read the full report by following this link to download the report PDF (1.2 MB file) or reading the report on the petitions Committee website here. The summary of the Petitions Committee inquiry can be found by following this link.
The launch event was streamed live and can be watched again on the Parliament website by following this link.
Thanks to everyone for helping us to reach over 120,000 signatures for the e-petition and we are particularly grateful to Maria Lester and the Realf family for so eloquently bringing this issue to the public’s attention.
If you have any further questions about campainging with us, please email us on firstname.lastname@example.org or call us on 01908 867200.
Speaker’s House Launch of 2015 Manifesto ‘Closer to a Cure’
On Tuesday 17th March, we were joined at Westminster by patients and their families, carers, scientists and other charities to launch the new Brain Tumour Research manifesto to MPs and members of the House of Lords at Parliament.
The Invest in a Cure manifesto is an open invitation and call to action inviting the UK Government to work with Brain Tumour Research and its partner organisations to shine the spotlight on research funding, incentivise and prioritise treatment for brain tumour patients, and facilitate innovation by providing a dedicated fund for brain tumour research.
The manifesto launch took place at Speaker’s House within the House of Commons and was hosted by charity patron and local MP Rt. Hon John Bercow alongside actress and author Sheila Hancock CBE. Both gave rousing speeches, setting the tone for what was a poignant evening of raising awareness for this devastating disease amongst MPs. Speeches were given by Rebecca Harris MP Chair of the brain tumour All Party Parliamentary Group which we established in 2005, Beverley D’Lima who lost her son Jack to a brai
n tumour at the age of 12, Harry Taylor a paediatric nurse (who nursed both Sheila’s grandson and Beverley’s Jack as well as our own Chief Executives niece Alison Phelan) and Charlie Boutwood, childhood brain tumour patient survivor (now in his twenties). MPs joining us included Ed Balls and Mark Durkan. This was a landmark opportunity to allow our collective voices to be heard in the corridors of Parliament during Brain Tumour Awareness Month and beyond.
Our Invest in a Cure manifesto calls on governments throughout the UK to work with Brain Tumour Research and its partner organisations to:
1) Shine a spotlight on research funding for brain tumours
2) Incentivise treatment – Prioritise brain tumour patients
3) Facilitate innovation – Ring-fence funds for brain tumour research
House of Commons Dinner (December 2014)
On Monday 15th December five Parliamentarians met with campaigners, brought together by the national charity Brain Tumour Research, at the House of Commons to discuss the discrepancies in cancer research funding. Rebecca Harris MP, Graeme Morris MP, John Pugh MP, Mark Durkan MP, Pauline Latham MP and Baroness Masham were presented with a set of stark facts and the charity encouraged a discussion on how the Government can improve outcomes for the 16,000 people diagnosed with a brain tumour each year.
Rebecca Harris MP, Chair of the All Party Parliamentary Group on Brain Tumours, hosted the dinner and said “I was joined at the dinner by Chris and Lisa Green, from Canvey, who set up The Danny Green Fund, of which I am proud to be a patron.
“The stark reality is that brain tumours are the biggest cancer killer of children and adults under 40 and yet national cancer research spend on brain tumours is just 1%. Therefore, it is vital that we do what we can to raise awareness of this important issue!”
New research presented to MPs and Minister reveals startling new facts (1st July 2014)
In an update to the ground-breaking National Research Funding report issued by the charity in July last year, our latest report presents a set of new, stark facts about the impact of the disease. Startlingly, one in 50 people who die under the age of 60 years are dying from brain cancer. And, just as shockingly, 71% of those who die of a brain tumour will be under 75 years old, compared to 47% for all cancers.
Brain Tumour Research brought together leading research scientists in the field of brain tumour research, patients and their families, to meet David Willetts MP, Minister of State for Universities and Science to present the findings. The group presented two critical issues to the Minister at a Meeting of the All Party Parliamentary Group on Brain Tumours, asking for clarification around funding flows and the need for a complete register of research taking place in the UK. The meeting was chaired by Andrew Selous MP, Chair of the APPG, and saw a large turnout of MPs in support of their constituents who have been affected by the disease.
All-Party Parliamentary Group on Brain Tumours Meeting hears from Jane Ellison MP (4th April 2014)
The All-Party Parliamentary Group on Brain Tumours met on Tuesday 8th April 2014 in the House of Commons, focusing on issues surrounding quality of life for patients diagnosed with brain tumour and the importance of early diagnosis. The meeting was organised by the Brain Tumour Charity and well attended by Parliamentarians, Brain Tumour Research member charities and activists, producing a fantastic discussion with stories from patients, carers and relatives on how they have coped with the illness.
The meeting featured a speech by Jane Ellison MP, Parliamentary Under Secretary of State for Public Health, whose brief in the Department of Health covers brain tumours. Ms Ellison was keen to stress the considerable interest in brain tumours within Parliament and praised both the large number of charities and individuals who have engaged with their local MP on the issue.
Speaker’s House Event to Launch New Research Partnerships (4th March 2014)
150 patients, carers, scientists, clinicians and MPs from across the UK headed to the Speaker’s House situated within the Palace of Westminster on Tuesday, 4th March 2014, for the launch of three ground-breaking new collaborative partnerships set up by Brain Tumour Research and three Research Centres of Excellence. The event was hosted by Speaker of the House of Commons John Bercow and marks a new chapter in long-term sustainable and continuous research into the biggest cancer killer of children and adults under 40. These initiatives pave the way for a £20 million investment in brain tumour research over the next five years. The new Centres are: Queen Mary University of London in collaboration with UCL Institute of Neurology, Imperial College Healthcare NHS Trust (London) and Plymouth University Peninsula Schools of Medicine and Dentistry.
Aidan Burley MP for Cannock Chase tables Early Day Motion on brain tumour research funding (26th November 2013)
"That this House notes that brain tumours have one of the lowest survival rates of all cancers, of just 19% within five years of diagnosis compared to 51% for all cancers and the highest average years of life lost of all common cancers of 20.1 years, compared to 11.8 years for lung cancer and 6.1 years for prostate cancer; further notes that brain tumours kill more people, including children, under the age of 40 years than any other cancer but receive less research funding per death than many other cancers; and further notes the recent report by Brain Tumour Research on this issue and supports its campaign for better funding for brain tumour research specifically."
Anna Soubry MP supports Headcase and Brain Tumour Research
Junior Health Minister Anna Soubry, MP for Broxtowe attended member charity, Headcase Cancer Trust’s ‘Red or Black Ball’ on Saturday 14th September 2013. She is pictured here with our Chief Executive, Sue Farrington Smith (left), Headcase Cancer Trust founder Colin Speirs (right, resplendent in his kilt!) and Professor Geoff Pilkington who leads the UK’s largest brain tumour research team at our Centre of Excellence in the University of Portsmouth.
We are grateful to Anna for her belief in our cause and active engagement in Brain Tumour Research parliamentary activity, attending our receptions and events when she can. Anna is a loyal supporter of Headcase, which is based in her constituency. She says: “Headcase Cancer Trust is a fantastic charity and I fully support everything that they and their fellow charities are trying to do to increase funding for research into brain tumours – a most devastating disease.”
Photo © Picture This Photography (Ilkeston)
Brain Tumour Awareness Lobby – a great succes
Patients, carers, supporters, charities and scientists from across the UK converged on Westminster to lobby MPs.
18 MPs signed a pledge that they would help raise the issues with government and others committed to write to Ministers on our behalf.
28th May 2012 - We need you to join in our Parliamentary Lobby on 13th June
Brain Tumour Research and other members of the Brain Tumour Consortium need you to come to Parliament and highlight the need for MPs and Government to do more in the campaign against brain tumours.
In particular, we need to make sure MPs realise how important this issue is by highlighting these facts:
Brain tumours kill more young people (0-14) than any other cancer
More people under the age of 40 die from brain tumour than any other cancer
Up to 40% of cancers which initiate outside the brain end up with a metastasis in the brain
8,600 primary brain tumours are registered in the UK every year but many go unrecorded
Research by brain tumour charities suggest the true figure is closer to 16,000 and that 32,000 develop secondary brain tumours in the UK yearly
But these facts alone are just some of the hundreds of pieces of information your MP is probably bombarded with every day. They are much more likely to remember your personal story and that is why your help is needed.
Once the MPs recognise the importance of the issue we will be asking MPs to take the following action on the day:
Sign a pledge to do more to highlight brain tumours
Distribute a press release template and photograph of them signing the pledge so that they raise awareness of the issue (and symptoms) in their local press
To sign an Early Day Motion (EDM) drawing attention to these statistics
To back a new Number 10 e-petition we will be providing (once the current one by Rachel Clark lapses in June)
Ultimately, we are asking MPs to maintain pressure on Government to deliver:
Earlier, more accurate diagnosis
Implementation of NICE's improving outcomes guidance - consistently applying best practice along the patient pathway
An increase in spend on research to reflect the true number of people affected by brain tumours
To drive home these points we will leave each MP with a copy of the Brain Tumour Consortium Manifesto.
26th March 2012 - MPs gather outside the Palace of Westminster to urge support for Wear A Hat Day
Monday 26th March saw John Bercow, Speaker of the House of Commons and James Arbuthnot, Chair of the brain tumour All Party Parliamentary Group joined by MPs: Andrew Selous - S W Beds, Anna Soubry - Broxtowe, Nottingham, Andrew Jones - Harrogate & Knaresborough, Peter Aldous – Waveney, Caroline Dinenage – Gosport, Matthew Offord – Hendon, Julian Brazier – Canterbury, Grahame Morris – Easington and Nigel Adams – Selby & Ainsty outside the Palace of Westminster to take part in a photo call in support of Wear A Hat Day and to raise awareness of the prevalence of brain tumours and the desperate need for funding for research, and the generous support of businesses, schools and clubs throughout the UK.
Pictured here from left to right - Andrew Selous, Nigel Adams, Matthew Offord, Caroline Dinenage, Andrew Jones, Anna Soubry and Julian Brazier
All have either personal experiences of someone diagnosed with a brain tumour or have been influenced by their constituent, representing Brain Tumour Research member charities, Umbrella Groups and Supporters across the UK. Many others pledged their support but were not able to join the photo.
See what Anna Soubry, Peter Aldous, Nigel Adams, James Arbuthnot and Matthew Offord had to say about their reason for getting involved and why they think you should too: http://www.youtube.com/braintumourresearch
23rd March 2012 - Prime Minister supports Wear A Hat Day
We are incredibly proud to have the support of the Prime Minister David Cameron who says “Brain cancer is a dreadful disease and losing someone you love to such an aggressive illness is not only traumatic but also extremely distressing for the family and friends left behind. This Government is committed to improving cancer survival which is why we are investing an additional £450million to help achieve earlier diagnosis of cancer through direct GP access to diagnostic tests such as MRI scans which can help diagnose brain cancer earlier.
The important work of the Brain Tumour Research charity helps raise awareness into the causes and treatments and I am delighted to support their annual fundraising campaign 'Wear a Hat Day' on the 30th March.”
See his letter of support here
16th November 2011 - e-Petition Raising Awareness & Funding for those affected by Brain Tumours
Brain Tumour Research through the Brain Tumour Consortium is calling on its supporters to sign a Government e-petition designed to trigger a parliamentary debate on how best to raise awareness and funding for those affected by Brain Tumours http://epetitions.direct.gov.uk/petitions/17419
The petition was launched by Rachel Clark and has already attracted many hundreds of signatures but the Brain Tumour Consortium is backing Rachel’s petition in order to draw attention to the ‘three asks’ we have set out in our manifesto. These are to:
Ensure early diagnosis and treatment byensuring that clear guidelines on identifying the signs and symptoms of brain tumours, and on referring patients for rapid and appropriate assessment, are integrated into General Practice and Emergency Medicine Practice.
Implement NICE’s best practice guidanceby setting a clear timetable to fully implement and audit theImproving Outcomes Guidance, or its country equivalent, in particular by ensuring that the Health and Social Care Bill maintains the progress made to date.
Increase Government investment in brain tumour research and more accurately measure numbers of both primary and secondary brain tumours bypublishing a detailed breakdown of site-specific braintumour research funding from the Government and ensure that by 2014 at least 7.5% of adults with primary braintumours are enrolled in randomised, controlled clinical trials as part of their therapy.
More details about our three asks can be found in the Brain Tumour Consortium Manifesto on the following link http://www.braintumourconsortium.org.uk/pdf/Brain%20Tumour%20Manifesto%202011.pdf
If you do sign up to the petition and would like to be kept informed of the progress we are making with the ‘three asks’ please do email us on email@example.com c.c, firstname.lastname@example.org and we will make sure we keep you up-to-date with developments.
29th March 2011 - Unprecedented Lobby on the House of Commons
Brain Tumour Research and member charities joined forces with Brain Tumour UK, Samantha Dickson
Brain Tumour Trust and the International Brain Tumour Alliance on 29th March in an unprecedented lobby -
`Don't forget brain tumour care'
Some 200 patients, carers, charities and medical professionals asked MPs to sign up to a brain tumour
care charter in support of the Guidance and make sure the guidelines are not lost in the wider NHS reforms.
Read Press Release
Read Brain Tumour Care Charter
October 2010 - Coalition of brain tumour charities launch manifesto at Houses of Parliament
Brain Tumour Research, Brain Tumour UK and the Samantha Dickson Brain Tumour Trust, with the International Brain Tumour Alliance, have launched a manifesto for everyone affected by a brain tumour. They hope to persuade the new Government to work in partnership with them to improve outcomes in diagnosis, patient care and research.
Read Press Release
March 2010 - Early Day Motion calls on Government to increase funding for brain tumour research
"That this house recognises that one in five of all cancers spread to the brain; notes that the number of children dying from a brain tumour in 2007 was 33 per cent. higher than in 2001; further notes that five-year survival rates for brain cancer are low relative to most other cancers; and calls for brain tumour research to receive greater cancer funding from Government than the 0.7 per cent. of all cancer funding that it currently receives." James Arbuthnot MP (North East Hampshire)
December 2009 - New Chair for the brain tumour All Party Parliamentary Group
Following John Bercow's appointment as Speaker of the House of Commons he has had to resign from his role as Chair of the brain tumour All Party Parliamentary Group. We are indebted to John for his support over the last five years and for his initiative in establishing the group in 2005 and are delighted that he continues to support the cause. James Arbuthnot MP for North East Hampshire who has much interest in and is very supportive of the brain tumour cause was elected as Chair at the AGM on 15th December. Evan Harris and Betty Williams remain as Vice-Chairs. We are looking forward to working with James Arbuthnot.
November 2009 - Meeting with the Chair of the Health Select Committee
Wendy Fulcher, Chair of Brain Tumour Research, and Sue Farrington Smith, Director, met with Kevin Baron, the Chair of the Health Select Committee, to outline the issues for brain tumour patients with particular emphasis on the inequalities of funding for research. They highlighted that this is a cancer that affects younger people and that it can't be prevented. Some cancers which have the backing of high profile site specific charities, such as leukaemia and breast, are able to raise more awareness and therefore funds and, as a result, have had a tremendous result in reducing mortality rates and increasing long term survival.
July 2009 - Meeting with the Medical Research Council
Baroness Jenny Tonge, Wendy Fulcher, Chair of Brain Tumour Research, Vanessa Dury, Head of Communications and Geoff Pilkington, Professor of Cellular and Molecular Neuro-oncology met up with personnel from the Medical Research Council (MRC) with a view to getting a better insight into how the MRC funds research and to seek clarity on the apparent disparity of their statistics.
In January 2009, the government outlined that in 2007/2008 they had spend £970k on brain tumour research compared to £14m for leukaemia. When these figures were published by Brain Tumour Research, leading brain tumour researchers were surprised at the level of funding being claimed. On further investigation, in an email to Baroness Tonge in December 2008, the House of Lords Library staff quoted officials from the MRC with very different figures.
"In 2007/08 the MRC's expenditure on cancer research amounted to £89.5million. In 2007/08 the MRC's expenditure on cancer research of particular relevance to brain cancer amounted to about £412k. MRC-funded research relevant to brain tumours includes core funding to the MRC Clinical Trials Unit in London for various clinical trials in brain cancer. Unfortunately there was no reportable MRC expenditure on brain cancer during 2006/07 - this is because programmes of work in this area were winding down, or just getting started and that is why no expenditure was incurred in 2006/07. The clinical trials in brain cancer, which are run by the MRC Clinical Trials Unit in London, were on-going in 2006/07 but make up such a small percentage of the Unit's total research budget that the spend could not be quantified for 2006/07."
July 2009 - Presentation to the All Party Parliamentary Group by Brain Tumour UK
The charity Brain Tumour UK is campaigning hard for change to get all Brain Tumours recorded. They have produced a report "Register My Tumour, Recognise Me". The report indicates that only around half of brain tumours are recorded. Although the research used to produce this report was carried out approximately 10 years ago, conversations with physicians indicated that little has changed in the interim. The brain tumours not recorded were thought to include those patients with high grade, inoperable tumours and secondary tumours. Brain Tumour UK are concerned to ensure that these patients were `in the system' and that local units could provide appropriate care arrangements.
For those patients where brain tumours were recorded, when they left hospital they would need access to various therapies: emotional care; rehabilitation etc. Brain Tumour UK was concerned that there were not enough professionals in the community with specialist knowledge of brain tumours. It was thought that there may be an opportunity to put outreach services into place that would collaborate with those services already available.
June 2009 - Report submitted to Cancer All Party Parliamentary Group
Health inequality is a major concern and frequently generates media debate, but the range and scope of inequalities are varied. As stated in the National Cancer Research Initiative (NCRI) Strategic Plan, "inequalities can occur in health itself or in access to treatment and other services and also in access to participation in research." The report prepared by Brain Tumour Research looks at the broader issue of inequality of national funding for site specific cancer research, focusing on the levels of funds provided by brain tumours. Related to this is the `inequality of profile' where some site specific cancers have successfully generated more awareness and funding, which has directly led to an improvement in diagnosis and treatment for cancer patients.
There are issues of inequality of care and support for brain tumour patients, some of which have been highlighted in the 2006 National Institure for Health and Clinical Excellence (NICE) "Guidance on Cancer Services Improving outcomes for people with brain tumours and other CNS tumours." This report focuses primarily on inequality of research. However, the related inequality of profile has implicatins for quality care and support for current and future patients with brain tumours.
Research into brain tumours is in its infancy, with very little known about the behaviour of brain tumours, their effective diagnosis and treatment, let alone finding a cure. Funding for this research significantly lags behind other cancers and clinical understanding of these cancers does not readily translate to brain tumours. Other site specific cancer charities are able to generate far more cancer research funding and levels of UK government funding for brain tumour research is particularly low.
Without an increase in funds allocated to brain tumours, Brain Tumour Research believes that there will be a continued and worsening inequality for brain tumour patients in terms of awareness, diagnosis, treatment and outcome.
April 2009 - Official Launch of Brain Tumour Research at House of Commons
Today, 14 brain tumour charities are `putting their heads together' and launching a campaign to raise awareness and increase funding for vital research. `Brain Tumour Research' is supported by brain tumour survivors Martin Kemp and Russell Watson and Sheila Hancock, whose grandson survived a brain tumour. Golfers Nick Faldo, Tony Jacklin and John O'Leary are also backing the campaign.
Brain tumours are now the leading cause of childhood cancer death in the UK but brain tumour research is `woefully under-funded' and a `poor relation to other cancers' according to brain tumour charities and medical experts.
Figures released today show that the number of children dying from a brain tumour in 2007 was 33% higher than in 2001; child deaths from leukaemia were 39% lower than in 2001. More children and people under the age of 40 die from a brain tumour in the UK than any other form of cancer. 65% more women die from a brain tumour than from cervical cancer. There is reportedly a 2% annual increase in the incidence of brain tumours, but some experts have seen the number of cases of brain tumours double over the past year.
Despite these statistics, brain tumour research is seriously under-funded and has not received the same attention as other cancers. Brain tumours receive less than 1% of the national spend on cancer research in the UK. Very little is known about the causes and treatment of brain tumours and without more funding for research, experts will be no closer to understanding the rise in incidence and mortality. Latest figures show than in 2006-7 UK Government funds dedicated to brain tumour research through the Medical Research Council amounted to just £970,000; total MRC expenditure was £89.5 million. Thanks to the extraordinary work of Leukaemia Research and other charities, higher profile cancers generate more than 20 times the funding than brain tumour charities. Read Press Release
Photo by Susan Alexander Photography
March 2009 - Early Day Motion calls on Government to ensure no barriers to research
"That this House, in recognition of International Childhood Cancer Day on 15th February 2009 and Brain Tumour Awareness Month in March, notes that 200,000 people each year develop a malignant form of primary brain tumour for which cure is unlikely; that in developed countries such as the USA, Canada and the UK, brain tumours have overtaken leukaemia as the most prominent cause of childhood cancer mortality, and calls on the Government to ensure that there are no unnecessary barriers to medical research or clinical trials on brain tumours amongst children" John Bercow MP (Buckingham).
See if your MP has signed the Early Day Motion and if not email them and ask for their support.
March 2009 - All Party Parliamentary Group (APPG) meeting - Introduction to the National Cancer Research Institute
Dr Jane Cope, Director of the National Cancer Research Institute gave a presentation on the National Cancer Research Institute (NCRI). She explained it is made up of 21 partners and that the criterion for membership is that they fund at least £1million p.a. of cancer research in the UK. Partners include Cancer Research UK and the Medical Research Council. Their activities are to manage the Cancer Research Database of the partners, develop research iinitiatives and working closely with the cancer networks for co-ordination of phase 3 clinical trials and experimental cancer medicine. They hold a conference on an annual basis.
The partners spent £420m between them on cancer research in 2007. 80% of the funding goes towards biology, treatment and aetiology. 40% of funding is specific - In 2007 brain tumours received 1.7% of site specific funding by the partners. The charts also showed that % research spend vs mortality lagged significantly behind cancers such as leukaemia and breast.
July 2008 – All Party Parliamentary Group (APPG) meeting – National Brain Tumour Registry
Jem Rashbass, Director of the Eastern Cancer Registration and Information Centre (ECRIC) and based in Cambridge, delivered a very informative presentation on the subject of the National Brain Tumour Registry.
He and his team have volunteered to take the national lead on brain cancer on behalf of the regional cancer registries and have been working with the group at Charing Cross to extrapolate the model that the BTRC (Brain Tumour Research Campaign) has been funding there on to a national level.
A steering group will be set up to meet in the autumn. The role of this steering group will be to determine how the core data should be expanded, assist with quality assurance, and decide how requests for properly approved research studies access the data.
The meeting raised strong concerns that benign tumours should be included in the dataset and exceptionally (since their behaviour is so significant in brain tumours) secondary tumours. It was also deemed important that there should be transparency and close collaboration / interaction with research labs that are not directly linked to NHS facilities. An awareness and PR campaign will also be initiated.
July 2007 – MPs' reception – Neil Burnett presented Years of Life Lost paper
John Bercow MP, Chair of the brain tumour All Party Group, sponsored an MP's reception which was held in July 2007. We invited Dr Neil Burnet from the Department of Oncology, University of Cambridge, to present his paper on comparing research spending by particular cancer type to mortality. In this he highlights four ‘Cinderella’ cancer sites of which brain tumours are one. Neil (pictured left) introduces the statistic – Average Years of Life Lost - and explains that brain tumour patients on average lose 20 years of life expectancy - the highest of any other cancer. Not only is it the largest cancer killer of children, brain tumours also kill more people under 40 than any other cancer.
In his thank you speech John Bercow (pictured right in photo) emphasised the need to maintain pressure on the government if we are to achieve our objectives.
March 2007 – Mass Lobby on House of Commons and Brain Tumour EDM
2007 saw increased pressure on the Government to prioritise funding for brain tumours. Brain Tumour Research group charities are affiliated to the Cancer Campaigning Group and we input into the draft document for the Cancer Reform Strategy, which seeks a greater focus on rarer cancers.
In March 2007 Ali’s Dream organised a Mass Lobby on Parliament, including sister charities, scientists, clinicians, patients and carers and, for our first one, proved very successful.
January 2007– APPG meeting raise issues of research funding
Professor Geoff Pilkington, University of Portsmouth, presented to MPs the issues of under-funding for research into brain tumours. He told the group at the latest brain tumour all party parliamentary group held on January 22nd, that there had been a 30-40% rise in the number of tumours being reported over the past thirty years. The rise in reporting was particularly noticeable in the elderly, which was thought to be as a result of environmental conditions. Geoff emphasised that brain tumours occurred across every age group and that this was perhaps not the case in some other cancers. He reported that Brain and Spinal tumours formed 25% of all cancers in children (leukaemia forming 31%) and went on to say that this was the major solid cancer of childhood years with patients often having a poor prognosis for recovery.
Approximately 2% of tumours diagnosed are classified as malignant brain tumours, although this figure does not take into account benign tumours that may later become malignant, or metastasised secondary tumours. It is felt that, if all these were encompassed, the incidence of malignancy would be much higher than currently reported.
Geoff displayed a sample of the many different types of brain tumours that could occur. He said that he felt proportional representation was an ineffective way to manage funding for research into brain tumours due to the variety and complexity of the nature of research required. He went on to display samples of some of the most common malignant tumours. It was acknowledged that survival time was vastly affected by lack of and delayed treatment. Geoff said that brain stem tumours were the most prevalent in childhood – this type of tumour limited the therapeutic models that could be applied and research was key to future survival.
Geoff also explained that cancer in the brain was extremely invasive and research was needed into this invasiveness in order to be able to offer effective treatment. He said that research skills were being applied to investigate how cells moved from one part of the brain to another in an attempt to understand this spread. It was noted that tumours in the brain very rarely spread to other parts of the body, although the reverse was not true.
Geoff said that there was a need to distinguish between paediatric and adult brain tumours, although research into both areas can translate across the types. It was noted that benign tumours brought their own questions: whether to adopt a “wait and see” approach (which may cause later problems) or proceed with treatment with the inherent risks that this brought. The meeting heard that 25% of all cancers in the body would eventually metastasise in the brain.
It was recognised that there was a lack of security for scientists who take up the field of neuro-oncology. Geoff said that he would like to see five year tenured posts, managed through a grant giving body which would have discussion with universities to ensure that the right people were given posts.
James Arbuthnot, MP for North East Hampshire, commented that we would need to be tenacious as it sometimes takes several repetitions before topics are taken up and ministers begin to take note of what is being requested.
November 2006 – John Bercow recognised as Charity Champion of the Year
2006 ended on a high with John Bercow winning the Health Charity Champion award as voted by fellow MPs. John was nominated by Ali’s Dream in recognition of the sterling work that he has done to champion the cause of brain tumours ever since trustee, Sue Farrington Smith went to see him in January 2004.
John Bercow said “I am thrilled to bits to receive this award, especially as it is the result of a vote by my parliamentary colleagues. Brain tumours are the biggest single disease killing children and they hit thousands of adults every year too. Unlike more high profile diseases, research into brain tumours has been desperately under-funded. Precisely because of this, survival rates have not risen in line with those for other cancers. I have worked in Parliament to raise the profile of the issue and to press Ministers to give it a much higher priority. The All Party Group of MPs which I chair has only just started its work. We shall now redouble our efforts on behalf of patients and their families so that this scourge is effectively tackled.”
Ali’s Dream is a member of the Brain Tumour Research group of charities which acknowledges that without the support of John Bercow to champion the cause of brain tumours they might still be knocking on closed doors. They are extremely grateful for his support and this award is a fitting recognition of his hard work.
July 2006 – APG meeting with Rosie Winterton, Minister of Health
Rosie Winterton, the Minister for Health Services, and Mike Richards, the National Cancer Director, accepted John Bercow’s invitation to join the brain tumour All Party Group Meeting. Professors Garth Cruickshank and David Walker (Professor of Paediatric Oncology at Queen’s Medical Centre, the University of Nottingham), along with representatives from UK Brain Tumour Charities, presented some of the issues. Mike Richards and Rosie Winterton agreed that now is the time to bring more focus to ‘rarer’ cancers and recognise that the needs of brain tumour patients, both in rehabilitation and end of life care, were very different and particularly acute.
March 2006 – Children’s brain tumour debate
In March 2006, Jeremy Wright, MP for Rugby and Kenilworth, secured a second adjournment debate. He had been motivated by his constituents, George and Karen Archer, who lost their two year old son Thomas to a brain tumour in October 2005.
Jeremy Wright raised the issues of the need to be better able to identify brain tumours at an early stage more often and the importance of effective research. He pointed out ‘that the NHS spends less on brain cancers than on other cancers, leaving a gap to be filled by the voluntary sector.’
John Bercow used the debate as an opportunity to raise the issues regarding the National Institute of Clinical Excellence recommendation, which at that time was not to fund temozolomide and carmustine implants for newly diagnosed high grade patients.
He also used the opportunity to invite the responding Minister of State for Health Services - Rosie Winterton to an APPG meeting.
December 2005 – First APPG meeting – treatment disparities
The first official APPG meeting was held on 19th December 2005. Professor Garth Cruickshank (Professor of Neurosurgery), and Dr Barry Pizer (Consultant Paediatric Oncologist), made presentations and outlined among other issues:
That brain tumours are desperately under-funded
The difficulties in co-ordinating patients into trials
Treatments are expensive but can make a difference
NHS falling behind the rest of Europe
July 2005 – Brain tumour APPG established
The Brain Tumour All Party Parliamentary Group was established at its inaugural meeting on 11th July 2005. By the time of this meeting, 43 MPs had signed up to be a member of the brain tumour All Party Parliamentary Group.
Initiator John Bercow (Con), MP for Buckingham, was elected Chair, with Evan Harris (Lib-Dem), MP for West Oxford & Abingdon and Betty Williams (Lab) as Vice-Chairs. Sue Farrington Smith, trustee of Ali’s Dream, agreed to provide the secretariat and co-ordinate the group's activities.
The Brain Tumour Research group of charities specifically called on the brain tumour All Party Parliamentary Group to focus their attention on the following:
To increase the proportion of spending on brain tumour research through both the MRC and CRUK.
To ensure that the relevant NICE guidelines are fully implemented by 2006 to include the introduction of a national brain tumour registry and a rolling audit process.
To ensure that the focus on brain tumours should include all brain tumours: malignant, low grade, benign, primary and secondary.
To ensure that access to treatment is consistent across all treatment centres with no restrictions due to budget.
July 2004 - First brain tumour Early Day Motion tabled
In July 2004, Ellie’s Trust MP, Bob Blizzard MP for Waveney, tabled an Early Day Motion – paying tribute to the work of UK brain tumour charities.
“That this house pays tribute to the valuable work carried out by UK charities which focus on the problem of children’s brain tumours; and believes that the NHS should work in partnership with these charities to provide better information and support for patients and carers, more education for general practitioners, an increase in specialist paediatric neuro-oncology nurses and a programme of research to study the causes, advance the treatments and discover a cure for children’s brain tumours”.
A letter was sent out to every MP and it attracted 119 signatures.
April 2004 – First ever debate on brain tumours
John Bercow, MP for Buckingham, secured the first ever debate on brain tumours in the House of Commons, choosing the subject of childhood brain tumours, and said: “I put it to the House that the issue of children with brain tumours is under-debated, under-reported and under-funded. In this Parliament, the issue has attracted minimal, dare I say it, derisory attention. There has been not one Adjournment debate until now. Not one oral parliamentary question and only two written parliamentary questions. However, there is an Early Day Motion which commends – and rightly so - the BBC online reporter Mr. Ivan Noble for his personal and moving website diary of the diagnosis and treatment of a malignant brain tumour. That motion has so far attracted no fewer than 28 signatures.
While the media have justifiably devoted coverage to other cancers, they have seemingly overlooked the plight of children diagnosed with brain tumours, giving scant coverage to that plight. The apparent low incidence of this type of cancer, by comparison with other forms, has caused the brain tumour community to be poorly supported and funded".