Posted on 29th January 2015 by William O'Brien in Lobbying
Brain Tumour Research has responded to NHS England’s consultation on the Stereotactic Radiosurgery and Radiotherapy Services review, stressing that any decision made needs to promote the welfare of patients and increase access to the best available treatments.
In November NHS England opened the consultation for responses to plans to close 19 of the 25 centres that offered specialised treatments for brain tumour patients. The treatments currently available in these centres are the gold standard stereotactic radiosurgery and radiotherapy services, which use exact beams of radiation to kill both cancerous and non-cancerous tumours in the head and thus removing the need for surgery in many cases.
The treatment is currently available in 25 centres across the country, ranging from the Freeman Hospital in the North East to University Hospitals Bristol in the South West, but patients receiving these treatments could now face unprecedented traveling to attend appointments for life saving treatments. The rationale behind the proposed changes is the need to improve the efficiency of a service and seems to have forgotten about the thousands of new people diagnosed every year with a brain tumour in the reorganisation of care.
The plans included provisions to provide treatment 7 days a week, a move that would be extremely welcome. It would increase the numbers of patients able to receive treatment and add allow more flexibility and choice for patients. Despite this, we have compelled NHS England to reconsider their proposals and ensure that the treatment that patients need is available to all at a reasonable distance of travel. The disease and the treatment often have debilitating effects on the patients and place families and friends caring for patients under extreme stress. Travelling to and from treatment is a considerable but necessary burden and should not be made any more difficult for patients than it already is. There is a significant coalition of patients, clinicians and Parliamentarians who have raised their concerns and we hope that NHS England take on board these views and rethink proposals that will not in any way benefit patients. (more…)
Posted on 5th January 2015 by Natasha Pile in Fundraising, Lobbying, News, Research
As we settle back into the routines of daily life after the Christmas and New Year break and we ponder our hopes and fears for 2015 I thought I would remind you of our absolute dedication to our vision of finding a cure for brain tumours.
When we launched Brain Tumour Research in 2009 at the House of Commons, it was our intention then to grow the market for brain tumour fundraising and to establish seven centres of excellence dedicated to brain tumour research. We started with highlighting the issues of the inequalities of funding for brain tumour research and we published our first authoritative report in June 2009. In July 2013, we reinforced the continuing issues by publishing our report on national research funding which we updated in July 2014; the reports call on the Government, the larger cancer charities and the general public to get behind our cause.
We are now a national and credible force.
Funding for research into brain tumours is now gathering momentum and we had our best fundraising year ever in 2014, with £4m raised by us and our member charities.
We now have three centres at Plymouth University, University of Portsmouth and Queen Mary University of London which are going from strength to strength and continue to gain praise and respect from the cancer research community worldwide.
We have come far and we need you to pledge to double the support you have given us over the years so that we can support our existing centres and reach our ultimate goal of seven centres in the UK.
With secure long term funding covering the key salaried positions, the centres we support are freed from the limitations and frustrations of applying for one specific project grant after another in order to secure opportunities. Promising researchers are therefore able to be trained up through the ranks and fulfil their potential, rather than being tempted into other cancer research which currently attracts greater funding.
Brain Tumour Awareness month will soon be upon us in March and our national Wear A Hat Day (27/03/14) is a great opportunity to get your place of work, your club and your schools involved. We also have a great choice of running and challenge events and of course you can get involved in Host for Hope in the summer months or throughout the year and host a gathering whether it be a coffee morning, BBQ, afternoon tea, dinner party or something else, raising money through tickets and raffles. You could also take up our Conquer It Together challenge and ask for sponsorship to do something physical, do something silly or face a fear.
We need you to help us raise money to fund seven centres of excellence, to ensure that the causes of brain tumour are identified, to ensure that every aspect of brain tumours is understood, to ensure that all 120+ types of brain tumours are being researched, to ensure that treatments that will improve outcomes are discovered and to ensure that a cure for brain tumours will be found.
Please join our #FightingForce, please continue to support us, and please help us raise money to beat brain tumours.
With love, thoughts and thanks
Posted on 23rd December 2014 by Natasha Pile in Lobbying, News, Research
The Labour Party has pledged to increase the budget of the Cancer Drugs Fund from £280m to £330m, if elected in next year’s General Election. Labour says it will continue the work of the Cancer Drugs Fund and will expand to include treatment such as radiotherapy and surgery as well as drugs. Labour claims that 40,000 cancer patients each year stand to benefit from radiotherapy which they do not currently receive. This is great news for brain tumour patients as radiotherapy is one of the most effective treatments currently available yet many are currently denied access.
Labour have also promised that any patient in receipt of a drugs from the Cancer Drugs Fund would continue to be offered that drug after concerns about patients being taken off drugs and removed from treatment lists due to new evaluations. Figures from Cancer Research UK also show that while half of radiotherapy patients should receive Intensity-modulated Radiotherapy, it is currently only received by a third.
We welcome this pledge to increase funds for treatment and drugs for rare cancers such as brain tumours. We support any pledge that puts brain tumour patient’s options and gives access to innovative and effective treatment to improve their lives and help them live longer.
The Cancer Drugs Fund is money set aside by the government to pay for drugs that have not been approved by the National Institute for Health and Care Excellence and are not available within the NHS in England. This may be because the drugs are not cost effective or have not been researched fully. Brain Tumour Research benefits from this fund because it opens up the possibility for different treatment for patients with rare diseases such as brain tumours.
Posted on 15th December 2014 by William O'Brien in Lobbying, News, Research
The world’s largest collection of deprioritised pharmaceutical compounds are being made available to academic researchers through a partnership between the Medical Research Council and seven global pharmaceutical companies. This scheme sees 68 compounds released for research and has the potential to develop a new range of treatments in diseases where options are limited, such as brain tumours. We are delighted such a scheme has been produced.
Deprioritised pharmaceutical compounds are bonds of chemicals or drugs that have undergone some degree of development but stalled in their early development because they were not sufficiently effective against the disease they were produced to fight. The compounds can however be ‘repurposed’ into research and trials for other diseases. In time they may produce a series of treatments that can fight diseases and save thousands of lives. Many of the compounds released in this current scheme have been tested on humans and were developed initially to tackle a wide range of diseases including cancers. At least 24 are known to be able to cross into the brain, which makes them potentially ground-breaking for to researcher into brain tumours.
Repurposing of drugs is a vital route for research into brain tumours. This scheme is excellent news for the development of research for brain tumours and we hope that more companies, and more compounds, will be added as the scheme progresses.
Posted on 28th November 2014 by Crispin in Lobbying, Research
Brain Tumour Research is delighted to welcome the news of a £30 million international charity coalition investment into diseases of the brain, called The Neurodegeneration Medicines Acceleration Programme.
The fund, comprising Neuro–MAP’s partners Alzheimer’s Association US, Alzheimer Research UK, Alzheimer’s Society UK, ALS Association, Michael J Fox Foundation, MND Association, MRC Technology, Northern Health Science Alliance and Parkinson’s UK, will aim to provide innovative drugs and treatments to several diseases that have a great level of unmet need.
The coalition will concentrate their investigations by looking at motor neurone disease, Parkinson’s and dementia, but their work will also inform studies into brain tumours. This research, unlike generic research into cancer, will significantly increase understanding of the brain and in particular how it copes with disease. This coalition is a great step forward for the study of neurologic diseases and will likely produce treatments for thousands of people.
However, despite these benefits we would urge the Government to ensure that there is a substantial increase in funding research into brain tumours. Despite brain tumours being the largest cancer killer of children and adults under 40, with deaths increasing over the last 10 years, research into finding a cure received only £6.8 million last year from NCRI members and overall just 1% of the national spend on cancer research. Brain tumour patients need a commitment from Government to significantly increase funding to tackle this deadly disease and we are leading the campaign for change.