Posted on 25th February 2014 by William O'Brien in Lobbying, News
Andrew Selous MP raised the issue of funding for brain tumour research during the House of Common’s debate on Cancer Priorities on the 13th of February. Andrew, who is the Chair of the All Party Parliamentary Group on Brain Tumours, gave a passionate speech outlining the need for greater funding into brain tumour research and how the cancer had become “the poor relation” of research funding.
The debate was arranged to consider the All-Party Parliamentary Group on Cancer report on cancer priorities in the NHS and the series of recommendations set out for the Government to reach its target to save an additional 5,000 people every year by 2014/15. Included in these recommendations was the need for a greater focus on research and this was a point that Andrew Selous emphasised in his speech, highlighting that only £1,400 was spent on research for every death from a brain tumour compared to £7,700 for leukaemia.
Andrew began his speech talking about Nicole Witts, a constituent of his who first raised his attention to the current state of brain tumour research funding. Nicole a brain tumour patient and great supporter of ours, runs our Umbrella Group Head 1st. He emphasised that brain cancer was in the small minority of cancers becoming more prevalent and seeing no drops in mortality rates. During his speech Andrew paid tribute to the work of a number of organisations and singled out Brain Tumour Research in particular for the work put into July 2013’s report on National Research Funding. Jane Ellison MP, The Parliamentary Under-Secretary of State for Health, was also present to underline the Government’s commitment to improving cancer survival rates and explained the Government’s policy to ring-fence funds for cancer and an improvement in early diagnosis.
Brain Tumour Research would like to thank Andrew Selous for being a voice for brain tumours in the debate and for his hard work as the All Party Parliamentary Group Chair.
The full transcript of the debate can be found here: http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm140213/debtext/140213-0003.htm#140213-0003.htm_spnew3
The APPG on Cancer’s report “Cancer Across the Domains: Cancer Priorities for the New NHS” can be found here: https://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/APPG/BritainAgainstCancer2013/BritainAgainstCancer-CancerAcrossDomains-reportDec2013.pdf
Posted on 17th February 2014 by William O'Brien in Lobbying, Uncategorized
The Cancer Campaign Group (CCG) is in the process of writing a report which will include an assessment of progress in cancer treatment since 2000. The report will form the basis of clear recommendations for government action that will form the basis of the CCG’s campaign ahead of the 2015 general election. As a member, Brain Tumour Research was asked to give its views on a range of topics which the CCG could help base its recommendations on.
The first question focused how organisations within the NHS (NHS England, Department of Health, Public Health England, Clinical Commissioning Groups and Local authorities) could improve cancer services within the next 5 years. Brain Tumour Research made the following recommendations:
• NHS England: Better focus on early diagnosis, speed up the time from 1st GP appointment to 1st specialist apt/diagnosis.
• Department of Health: Greater attention to Brain Tumours in allocation of research funding.
• Public Health England: Raise awareness of Brain Tumours through a public campaign.
• Clinical Commissioning Groups: Commission more proton therapy sites
• Local authorities: There is a lack of focus on rehabilitation – in particular with children. Make GPs more aware of brain tumour symptoms and aim to increase the speed of referral and start of treatment.
A coordinated, NHS wide campaign with these measures could make a significant impact in saving and improving the lives of the thousands diagnosed with brain tumours every year. Brain Tumour Research hopes that the CCG will highlighted these proposals in their report and help shine a light on a forgotten cancer.
The second section of the questions asked involved what Brain Tumour Research saw as the most significant achievements in improving cancer services, treatment or outcomes since 2000? There have been many noteworthy advances across all areas of cancer services and Brain Tumour Research felt it better to break them down into categories:
• Novalis Tx (July 2011) which has the ability to kill cancerous cells without invasive surgery
• SonoWand (November 2013) which enables more accurate brain surgery
• The approval by NICE of temozolomide which helps patients whom initial chemotherapy has failed makes an important difference to patient outcomes
• National Hospital for Neurology and Neurosurgery (NHNN) (February 2011), the first dedicated brain tumour unit.
• The foundation of the NCRI which, despite our concerns with limited scope of the membership and the data consequently omitted, provides measure of spending on cancer research, site-specific and otherwise, is a major step in the right direction
• The founding of CancerResearchUK which has helped drive research funding towards finding cures for cancers.
• The Macmillan Cancer Support ‘Access to Cancer Treatment’ campaign provides information for people who feel they would benefit from a treatment or drug that isn’t routinely funded by their local health body.
• The founding of Site Specific Research Charities has helped drive research funding towards finding cures for specific cancers.
• The foundation of the APPG on Cancer and the APPG on brain tumours has been highly important in encouraging Parliamentarians to focus on the condition and the search for a cure.
While there have been successes since 2000 there are still great lengths to go until we can provide the care and the cure that every patient deserves. Brain Tumour Research supports the report and campaign of the CCG to raise the profile of cancer, and will continue to campaign for better funding for brain cancer research and care for patients.
To join our campaign sign our e-petition on research funding for brain tumours: http://epetitions.direct.gov.uk/petitions/55378.
Posted on 3rd February 2014 by William O'Brien in Lobbying, News
The first annual ‘Wales Cancer Patient Experience Survey’ was released on the 27 of January 2014. The report aims to draw together the experiences of cancer patients in Wales and discover how well their holistic needs are being met.
It is striking that brain tumours, as well as other rarer cancers, have poorer experiences than more common cancers, such as breast cancer with the time and decline in health between GP and hospital appointments particularly poor. 42% of brain tumour patients saw their GP three or more times before going to hospital, the worst figure recorded, while 32% of patients felt their health had deteriorated while waiting for an appointment with a hospital doctor, the second worst result recorded. These findings highlight the need for more effort to be put into early diagnosis so that treatment for brain cancer can start as quickly as possible and be given the best possible chance of success.
The report has also highlighted the need for clinicians and health staff to help patients better understand their condition in an accessible, supportive way. Only 61% of brain tumour patients fully understood the explanation they were given on what was wrong with them while only 32%, the lowest of the groups surveyed, felt they were given easy to understand written information about their condition. Brain Tumour Research believes that no patient should be left in the dark when it comes to their treatment. Every patient should have their condition and options explained clearly and sympathetically to them in these extremely trying circumstances.
The survey was not all damming of brain cancer treatment, with high scores in the categories of contact details of key worker, understanding side effects and the availability of emotional support. On top of this brain tumour patients scored the best responses to the opportunity to discuss a care plan, 80%, and scored well in being offered a written assessment of care plan.
Brain Tumour Research are campaigning to improve the treatment and care of brain cancer patients, as well as increasing the level of research into the illness. While more money into research will improve the efficacy of treatment, as this report highlights basic care and diagnosis also need to improve.
Link to report: http://wales.gov.uk/topics/health/publications/health/reports/report13/?lang=en
Posted on 20th January 2014 by William O'Brien in Lobbying, Uncategorized
Cancer Research UK released a series of figures last week that show that the number of people being diagnosed with cancer has increased to 330,000 people a year. The figures, taken from the Office of National Statistics release in June 2013, shows the occurrence of cancer up to 2011 – when data was last made available. The statistics show that there has been an increase of around 50,000 people a year in the ten years since 2001 and that while more people are being diagnosed there has been a significant increase in survival rates.
These figures underline the invaluable role research plays in beating cancer. Despite the increase in cancer diagnosis, caused by an ageing population as well as lifestyle factors such as an increase in alcohol use and obesity, survival rates have increased because of the breakthroughs in treatment that research has uncovered. 23 percent of cancer patients survived ten years in the 1970s, climbing to around 46 per cent in 2007 and this is largely down to research.
Brain Tumour Research has always maintained that research is the best way to improve the survival rates. We hope that both Government and the NHS recognise the need for more research funding into rarer cancers and match our ambition to see a cure for brain tumours.
Posted on 10th January 2014 by PB Consulting in Uncategorized
Our plans for 2014 / 15 include meetings with Ministers to highlight the issues of care, access to imaging, access to treatments, early diagnosis and launching an inquiry into research funding issues. If you want to get involved in lobbying and attend our lobbying events please contact firstname.lastname@example.org’