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If only brain tumour research could be funded in the same way as leukaemia and other cancers

Earlier diagnosis of brain tumours – a step closer to a cure

The National Institute of Health and Care Excellence (NICE) have announced changes this week that have the potential to save up to 5,000 lives a year by streamlining the referral process for cancer diagnosis. NICE’s new guidelines have updated the symptoms that could potentially be caused by a cancer and provide for new GP powers to order certain tests directly. These powers circumvent time consuming referrals to specialists and will speed up access to treatment for patients.


The guidelines now recommend that a patient with symptoms that have a 3 in 100 chance of being cancer are referred for tests and allows CT scans and internal examinations, such as endoscopies, to be available without a specialist referral to allow the cancer to be spotted earlier. Professor Mark Baker of NICE stated that the policy would save a “tangible number” of lives and would address the poor levels of cancer survival in Britain in comparison the rest of Europe.

Far more options are open to doctors when a cancer is diagnosed early and there is the chance to catch the tumour before it has grown or spread to levels where an operation or other treatment is not feasible. There is a clear correlation between survival rate and early diagnosis and we hope that these steps are just the beginning of system wide changes to diagnosis and treatment. We are hoping that the Cancer Taskforce, set to release their recommendations later this summer, will have a particular focus on rarer and less common cancers; from the diagnosis of harder to spot symptoms to renewed focus on research.

It is only through a combination of better diagnosis and improvement in treatments, which only research can provide, that we see the results in cancer survival we need. Whilst we welcome the NICE guideline changes, we implore the Government and NHS to recognise the desperate need for more funding into research and will continue to campaign until this is a reality.

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Response to Cancer Drugs Fund Consultation

HoPThe Cancer Drugs Fund was launched in 2010 by the Coalition Government and has since spent around £200 million on drugs that were previously unavailable in the NHS, treating around 60,000 patients in England. The fund has been widely hailed as a success, receiving praise from clinicians and patient groups and featuring strongly the Conservative Party’s successful election campaign.
The Fund will continue until at least March 2016 and after this point it will either be renewed or an alternative established. Much of this depends on the financial sustainability of the Fund and its continuing ability to bring treatments to patients with few other options.
As part of this evaluation of its future, changes are being proposed to its format and have been open for public consultation. The changes that NHS England were consulting on were:

  • The need for peer review before a QOL score (quality of life score) is awarded
  • The use of ‘significant’ rather than ‘major’ as the measure of improvement or deterioration when a QOL score is awarded
  • The change of an amendment of the definition of rarity when scoring a drug’s median cost per patient, so that a drug’s potential use, rather than its likely actual use, is taken into account
  • Changing the rarity to be used when scoring a drug’s median cost per patient, so that a drug’s use both within and outside the NHS is taken into account?

Brain Tumour Research submitted a response to this consultation. The majority of these amendments are necessary and provide the opportunity for the Fund to reach out to the patients in most need of new drugs that cannot be funded on the NHS. We hope that these amendments will allow for a sustainable Fund that seeks to help secure the treatment for both the youngest patients and those patients battling rarer cancers.
Brain tumours disproportionately affect young people. They are responsible for over 20 years of life lost – more lethal than any other cancer and less than 20% of those diagnosed survive beyond five years, yet the current criteria does not reflect such important factors.
Crucial research is currently prohibited by the lack of recognition of the importance of prioritising research and development which focuses on this patient group. We argued that the addition of a criterion favouring treatments for under 75s would incentivise commercial organisations to invest in the crucial research needed to find a cure for deadly diseases, including brain tumours.
We believe that the changes to the Cancer Drugs Fund are a good start to finding a more effective way to tackle cancer, but strongly believe that more steps should be taken to find treatments that provide the key to beating brain tumours and other rare cancers in particular. As we argue in our manifesto, Invest in a Cure, a ring-fenced Innovation Fund for brain tumours and a clearer view of the research landscape are essential steps to finding a cure for this terrible disease.

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New Report on Research for Children

The Nuffield Council on Bioethics has released a report examining the best way to increase research and clinical trials for children. The Council, an independent body that looks at ethical issues in biology and medicine, states that research for children is essential and that only research conducted with children provides the good evidence that can ensure the safety of patients receiving medical treatments. The report explains the processes of how research should be approached, with open dialogue that involves taking part in the research, and we hope can kick-start a wave of research that can save the lives of thousands of children.

Brain Tumour Research

In order to provide the best quality treatments for children, regardless of the disease, research needs to take place with their involvement. The bodies of adults and children are different, responding to treatments differently because children are still growing. Researchers are currently reticent to involve children in research, denying the opportunities to develop new treatments and to live healthy lives. Action is desperately needed in the UK as less than 5% of biomedical research funding is directed at children, less than 5% of registered studies involve children and less than 5% of neonatal medications have been evaluated in new-borns. This report sets out an ethical process to involve children in research, stressing that the research is with children not on them and that honest communication with the child and parents should be at the centre of any project.

We welcome this report by the Nuffield Council on Bioethics and both their analysis of the problem and recommendations for solutions. Children and young people are effected by brain tumours more than almost any other disease, killing more children than any other cancer. We believe that the level of research on brain tumours needs to be incentivised through the Cancer Drugs Fund and through a ring-fenced Innovation Fund, as we have argued in our manifesto Invest in a Cure. We call on the Government to help facilitate research for children and on rare cancers, which would give hope to thousands of families throughout the country.

Read the full report. 

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General Election 2015: Health and Research Policies

In the last week the Conservative Party, Liberal Democrats and the Labour Party have unveiled their manifestos for the upcoming election, with all the parties putting the health system at the centre of their offers to the public. The proposals will form the vast majority of health policy for the next five years and we welcome policies from both sides that will improve the lives of cancer patients. We look forward to forming a productive relationship with the next Government and helping to find a cure for brain tumours.


The Conservative Party has pledged to continue to increase spending on the NHS by around £8 billion by 2020 in order to meet the plans and goals set out by the NHS England plan Five Year Forward View. The manifesto also lays out plans for a 7 day a week NHS by 2020 and guaranteed same day appointments for over 75s. Pledges to improve cancer services include the full implementation of the Cancer Taskforce’s recommendations, continuation of the Cancer Drugs Fund and a promise to “support research to improve the diagnosis and treatment of rare diseases and cancers” with an increased move towards personalised treatments.

The Liberal Democrats set out its policies for the NHS under the banner of Protecting the NHS and Improving Health. There is a large focus on ensuring that the NHS receives the £8 billion investment laid out in the Five Year Forward View, bringing the standards of mental health services up to those of physical health and making GP services easier to access. The Liberal Democrats also promise to repeal certain areas of the Health and Social Care Act, ensure TTIP does not include the NHS and bring cancer survival rates up to match the best in Europe.

The Labour Party unveiled its plans to repeal the Health and Social Care Act, curb ‘market forces’ in the system and join up physical health, mental health and social care in one system. Labour will aim to save 10,000 lives every year by improving cancer survival through ensuring early diagnosis with faster turnaround of test results and increased access to new radiotherapy and surgeries, as well as cancer drugs, in a new Cancer Treatment Fund. This Fund will replace the current Cancer Drugs Fund, expanding the fund to all forms of innovative cancer therapies, and will stand alongside a scheme to improve access to clinical trials and maintain the Pharmaceutical Price Regulation Scheme.

As well specific policies in the health system we welcome the commitments all three parties have made to continue investment in scientific research. The Conservatives pledged £6.9 billion for research infrastructure in UK in order to boost efforts into ‘curing diseases, driving technological innovation promoting business investment and informing public policy for the better’. Both Labour and the Liberal Democrats also highlight their commitment to building on the UK’s strengths in science and research, with Labour proposing ‘a new long-term funding policy framework’ for the sector and the Liberal Democrats promising to ring fence the science budget until 2020. These commitments are essential in the fight to find a cure for brain tumours and all three main parties have solid plans for ensuring this remains a possibility.

There are a number of promising policies in all manifestos that if implemented will make a real difference to the lives of people with brain tumours and their loved ones. However, we are disappointed by the lack of explicit commitments to fund research into the cancers that overwhelmingly kill children and adults before their time. As we have argued in our manifesto, an increased spend on brain tumour research to £30-£35 million each year is essential and to save lives and we will be campaigning for this whoever forms the Government after the 8th May.

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Brain Tumour Awareness Month 2015

We have reached the end of another incredible Brain Tumour Awareness Month and so I’d like to take a moment to reflect on what we have achieved together throughout March.

At the beginning of March, we asked you to share our new ‘Case for Support’ on Facebook and Twitter. The response was overwhelming – thanks to you, it reached over 60,000 people online. The Case for Support is an easily digestible summary of our core values and objectives, it represents all that we stand for and has already encouraged many more supporters to join in the fight. If you haven’t had a chance to read it yet, please do so on our website and share with all you can.

Invest In A CureOn Tuesday 17th March, we launched our ‘Invest In A Cure’ manifesto at Speaker’s House in the House of Commons, Westminster. Joined by Mr Speaker, the RT Hon John Bercow himself and attended by incredible charity supporter Sheila Hancock CBE, the event was a huge success as we took the lead in influencing the next government’s thinking in regards to funding into brain tumour research.

Joining us in expressing the urgency to Invest In A Cure were supporters, fundraisers, patients and their families, carers, scientists and other charities. We presented the manifesto as a united group – the response was phenomenal, our collective voice echoing around Westminster for some time afterwards. I’d like to send my sincerest thanks to all who attended (and all those who supported from afar), together we will bring change.

Of course for us the most important date in Brain Tumour Awareness Month is WEAR A HAT DAY, which this year took place on Friday 27th March.

It was clear from towards the end of 2014 that this year’s event was going to be bigger than ever. However, we simply could not have predicted just how huge it would become. We received the greatest ever number of registrants and a swell of support from local and national organisations alike.

Thousands upon thousands of you donned your hats for the day and I cannot thank you enough for doing so.

However you took part, your stories helped us reach new heights of awareness for our cause – Thank you.

As ever, we continue to look to the future. For Brain Tumour Research, the next big milestone will be the formal launch of our Centre of Excellence at Imperial College London; our fourth centre dedicated to helping us find a cure for this devastating disease.

Thank you all for your continued, dedicated and tireless support. I am so very proud to have you all on this journey.

Together we will find a cure.

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