Posted on 27th February 2015 by Ross Whyte in Lobbying
Wednesday night saw a debate on Childhood Cancer organised in the House of Commons by Nicola Blackwood, MP for Oxford West and Abingdon. As it is to be expected from the biggest cancer killer of children, brain tumours figured heavily in a passionate debate on how the UK can improve services and the lives of children diagnosed with cancer.
Ms Blackwood introduced the debate by telling the story a young boy named Skye who tragically died aged six in 2014 from a grade IV metastatic medulloblastoma, the most commonly occurring brain tumour in children. Ms Blackwood described the stages of treatment Skye endured and how despite the best treatment available his parents lost their child. Ms Blackwood moved on to commend the recent work in child cancer that has seen eight in 10 children with cancer survive five years or more, compared with just three in 10 in the 1960s, and the level of commitment and funding from the Government to fighting cancer.
Ms Blackwood however moved on to raise several issues where care can be improved, in particular in the provision of clinical trials, data collection and research into childhood cancers. Of funding for research into brain tumours Ms Blackwood said “I am going to ask the Minister to consider whether having only 6% of childhood cancer funding going to the biggest killer in childhood cancer represents getting the balance right, and I am going to ask her to maintain investment in the Health Research Authority programme to streamline the regulation and governance processes for clinical research in the NHS.”
In response Jane Ellison, MP for Battersea and Parliamentary Under Secretary of State for Public Health, outlined the current projects that the Government is undertaking. The most interesting is a clinical trial on medulloblastoma in children and young people that is currently recruiting patients. This trial is being run jointly by the Department and the Wellcome Trust and is part of the “ground-breaking research” that Ms Ellison has said the Government is helping.
We are delighted that Ms Blackwood has joined the group of MPs in Parliament who are raising awareness of brain tumours and pressing for better outcome and thank her for organising such an important debate. As Ms Blackwood stated, Brain tumours kill more children 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 striving to fund a network of seven dedicated research centres whilst challenging the government and larger cancer charities to invest more in brain tumour research. Help us fund the fight. Together we will find a cure.
Posted on 11th February 2015 by William O'Brien in Lobbying, News
On Thursday 5th February MPs engaged in a debate on improving outcomes for cancer patients. The debate was arranged by the Backbench Business Committee following a bid from MPs including John Barron, Chair of the All Party Parliamentary Group on Cancer, and Rebecca Harris, Chair of the All Party Parliamentary Group on Brain Tumours. The debate was an opportunity for MPs to share ideas on how the NHS and Government can move care and treatment forward to improve cancer outcomes across the country.
John Barron introduced the debate, acknowledging the Macmillan Cancer Support analysis that the number of cancer patients in the UK is increasing, rising to 2.5 million this year, while survival rates have increased 10% since 1997, saving around 10,000 lives a year. The debate moved on to comparing survival rates across Europe and to the benefits of early diagnosis before Rebecca Harris rose to speak on brain tumours. Mrs Harris spoke passionately about Danny Green, a 10 year old from her Castle Point constituency who died in 2012 after being diagnosed from a brain tumour, and the disparity between survival rates between brain tumour and other cancers. Quoting statistics from our reports Mrs Harris stated that brain tumours are the biggest cancer killer of children and adults under 40, with five year survival rates of 18.8% compared to 50% for all other cancers, and argued that £35 million of investment into research is needed to close this gap.
Jane Ellison, Parliamentary under Secretary of State for Public Health, responded on behalf of the Government to some of the issues raised, focusing largely on early diagnosis of brain tumours and the establishment of two proton beam therapy centres set to open in 2018. We would like to thank everyone who secured and took part in this critical debate, in particular Rebecca Harris for speaking about the realities facing brain tumour patients in such an important setting. We hope that by raising the profile of brain tumours in Parliament we will no longer be fighting for a ‘forgotten’ cancer and that the resources we need to save lives will become available.
The full debate can be accessed here.
Posted on 4th February 2015 by William O'Brien in Lobbying, News
Cancer Research UK released figures today, World Cancer Day 2015, showing that one in two people will develop cancer in their lifetime. The report, published in the British Journal of Cancer, has the most accurate figures and forecasts ever available and hammer home the importance of research in battling cancer.
Professor Peter Sasieni of St Mary’s College has said that “Cancer is primarily a disease of old age, with more than 60 per cent of all cases diagnosed in people aged over 65. If people live long enough then most will get cancer at some point” and goes on to state the prevention, quitting smoking and moderating drinking for example, of cancer is the best way. Whilst this is true for the majority of cancers, less than 40% of those diagnosed with cancer are under the age of 65, we have continually found in our analysis that it is not the case for brain tumours. 52% of brain tumour patients are under 65, with brain tumours the largest cancer killer of children. We are concerned that studies such as the one today forget the effects of cancers on children and the young and the urgent need for more research into new cancer treatments for those cancers.
As our 2013 and 2014 reports have shown, brain tumours are a young person’s disease, responsible for 20 years of life lost in the average patient. We believe that more focus needs to be given to cancers that effect the young disproportionately so that all cancer patients have the opportunity to reach old age. This focus has to take the form of increased research – not prevention – because we simply have no way to prevent brain tumours as we do not yet know the cause.
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! Our understanding of the biology of the tumour has to be advanced soon if we are to make a meaningful attempt at reaching the survival rates of other cancers, rates that have doubled in the last 40 years, and we call on Cancer Research UK to join us in our fight against brain tumours.
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