Posted on 26th May 2015 by William O'Brien in News, Research
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.
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.
Posted on 20th April 2015 by William O'Brien in Lobbying, News
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.
Posted on 1st April 2015 by Ross Whyte in Lobbying, News
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.
On 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.
Posted on 31st March 2015 by William O'Brien in Lobbying, News
- The Cancer Taskforce has released its Statement of Intent outlining where it believes there are opportunities to reduce the ‘burden of cancer overall and to improve care for cancer patients’. This Statement gives an initial view of where the Taskforce believes the most progress can be made and the green shoots of the strategy that will be published in the summer of 2015.
The Statement, which can be found here, outlines the current state of cancer care in the UK, why the Taskforce feels this is a time for a review and how it feels care in the UK can be improved. Brain Tumour Research completely agrees with the Taskforce that a complete review of cancer services in the UK, where survival rates are continually lower than European averages, is needed and that this review should be as far reaching and fundamental as possible.
Many of the problems identified and ambitions for a better system seem excellent and we hope that we do see:
- An increase in 5 and 10 year survival rates
- Improved equality in treatment across the country
- Improved experience of care for every patient
- Continuous improvement in long-term quality of life
However, despite these noble goals, we are extremely concerned about the lack of focus given to the importance of research into making these goals a reality.
As the Statement cites, survival rates for brain tumours have remained ‘stubbornly low’ while survival rates for breast, testicular and prostrate cancer (to name just three) have substantially improved in the last 40 years. Rather than the level of spending on brain tumours simply being ‘maintained’ we urge the Taskforce to join us in supporting a major boost for research into the cancers that need it the most.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research is allocated to this devastating disease. This is unacceptable!
We are calling for the Cancer Taskforce and the Government to recognise the importance of research and:
1) Shine a spotlight on research funding for brain tumours
2) Incentivise treatment
3) Facilitate innovation
Without a significant increase in research funding for brain tumours, to £30-35 million a year, it could take over 100 years for survival rates to match those of other cancers and those with brain tumours will continue to suffer as a consequence.
For more details on our policies and to support the fight for fairer funding, please follow this link to our 2015 Manifesto ‘Invest in a Cure’.
Posted on 13th March 2015 by Ross Whyte in Research
On March 12th Professor Geoff Pilkington of University of Portsmouth, Sue Farrington Smith and Wendy Fulcher, Chief Executive and Chairman of Brain Tumour Research respectively, were pleased to welcome Professor Denis Henshaw, Scientific Director of Children with Cancer UK on a tour of the world-class laboratory where he was able to witness first-hand the cutting edge research taking place into the disease.
Children with Cancer UK previously awarded a £196k grant to Professor of Neuro-Oncology Geoff Pilkington at our Centre of Excellence in University of Portsmouth; specifically to help further their research into finding a cure for childhood medulloblastoma.
Denis explained why this research is so vital:
“Medulloblastoma is the most common malignant brain tumour of childhood. The powerful protection that the blood-brain barrier provides means the many generic treatments used to fight cancers elsewhere in the body cannot be applied to children with brain tumours. This is one of the reasons why dedicated research is so important and why we are delighted to be funding the important work being undertaken by Professor Pilkington.”
With the funding from Children with Cancer UK, Pilkington’s team is using cutting-edge molecular techniques to unravel the biology of medulloblastoma. They are aiming to reverse an important genetic modification in medulloblastoma to develop a new gene therapy approach that can go forward to clinical trial.
Our partnership with the University of Portsmouth has gone from strength to strength since it began in 2010 and we are delighted that it is now attracting funding from larger cancer charities such as Children with Cancer and are extremely proud of the progress that Professor Geoff Pilkington and his team have made – thanks of course chiefly to the funds raised by our amazing supporters!
Read more about the incredible work being undertaken all four of our Centres of Excellence here.