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National brain tumour research funding needs to increase to £30-35 million a year

All-Party Parliamentary Group on Brain Tumours – July 2016

All-Party Parliamentary Group on Brain Tumours – July 2016
As Westminster welcomed Britain’s second woman Prime Minister on Wednesday, the All Party Parliamentary Group (APPG) on Brain Tumours and members of the brain tumour community met in the heart of Parliament.

The APPG meeting reviewed the landmark success of the Petitions Committee inquiry into brain tumour research funding and discussed how the new Government can take forward their recommendations in the year ahead.Chair of the APPG on Brain Tumours, Rebecca Harris MP, remarked: “The last year has seen the profile of brain tumours raised in response to the absolutely stunning petition into brain tumour research which attracted over 120,000 public signatures and secured a fantastic debate in Westminster Hall.”

Rebecca chaired the Annual General Meeting of the APPG in which parliamentarians from across the political spectrum duly re-elected the current Officers of the group;

Chair – Rebecca Harris MP (Conservative),
Vice Chair – Kevin Brennan MP (Labour),
Vice Chair – Lord Carlile (Liberal Democrat),
Vice Chair – Mark Durkan MP (Social Democratic & Labour Party)
Secretary – Caroline Ansell MP (Conservative).

It was agreed that Brain Tumour Research would continue to provide the Secretariat for the All Party Parliamentary Group on Brain Tumours, 11 years after we first established the APPG with the help of our friend and Patron, John Bercow MP, now Speaker of the House of Commons.

Parliamentarians, patients, families and researchers then heard from the Petitions Committee Chair and several leading voices of the brain tumour research community;

Helen Jones MP – Chair of the Petitions Committee, House of Commons
Peter Realf – Father of Stephen Realf and Maria Lester, Petition Initiator
Professor Tracy Warr – University of Wolverhampton
Sue Farrington Smith – Chief Executive, Brain Tumour Research

Helen Jones described how the petition to ‘Fund more research into brain tumours’ reached over 100,000 signatures and continued to grow by the time the Committee had completed its report into brain tumour research. In thanking those who gave evidence and submitted consultation responses to the inquiry, Helen said: “Committee members were genuinely horrified by what they heard, we were really shocked. There are real people with real suffering who need support and want further investment into brain tumour research.”

She noted that the Government has since conceded that a “greater level of brain tumour research is urgently needed so that patients can experience better outcomes.” Helen paid credit to George Freeman MP, Minister for Life Sciences for this statement but said now was the time to follow through with these commitments. She remarked that “a lot of the information given on funding was quite frankly opaque and brain tumour research has been underfunded for many years!”

Peter Realf 1The APPG then heard from Peter Realf who gave a moving speech in memory of his son Stephen who died in 2014 after fighting his tumour for 6 years, aged just 26 years old. Peter recalled his daughter Maria asking him and his wife Liz how the family were going to mark the first anniversary of Stephen’s passing. Maria said “We need to do something positive to mark the occasion, as Steve was such a positive person. You two are not going to sit around moping all day!”

They decided to start a parliamentary petition which reached its first milestone of 10,000 signatures only 6 days later, thanks to an army of supporters and the support of Brain Tumour Research. Peter said the whole Petition Committee inquiry had been a fantastic example of democracy in action!

Commenting on the Government’s initial response to the petition, Peter said: “The response spoke not of lives lost, but rather of process and criteria and it seemed the Department of Health had completely failed to grasp the terrible significance of this disease, ignoring the fact that it was the biggest killer of those under 40 years of age.” The Government’s response was in stark contrast to the evidence given to the Committee by Maria who said: brain tumours are “responsible for over 20 years’ of life lost in the average patient, which makes it the most lethal cancer in this measure.”

Talking of the desperate need for increased funding, Peter pointed to the newly released figures from the National Cancer Research Institute which showed that the total national spend on research into brain tumours had actually decreased to just 1.37% in 2015. He said “this is quite outrageous and is a trend that must be swiftly reversed.”

Tracy WarrTracy Warr, Professor of Neuro-oncology at the University of Wolverhampton addressed the meeting next and agreed with previous speakers on there being a lack of funding for site-specific research in brain tumours. She said she was very pleased that the Government has accepted the need for more research in this area, however, it was not clear how this would be funded.

Looking at the current national research funding system, Tracy described how the funding mechanisms in place for cancer have not worked for brain tumours. She paid thanks to the brain tumour research community and Maria Lester for initiating the petition, saying the majority of funding has come from fundraising and families. Tracy concluded that now was the time for brain tumour research to be accelerated and for a multi-disciplinary approach to look at each brain tumour type from different scientific angles.

Rebecca Harris - Sue Farrington Smith - Peter Realf - Tracy WarrSue Farrington Smith, Chief Executive of Brain Tumour Research addressed the APPG last, building upon previous speakers in how we go forward in tackling the historic underfunding of brain tumour research. Sue said: “Today brain tumour research represents just 1% of national spend and less than 20% of brain tumour patients survive beyond five years.

Indeed, in 2015 the national investment in brain tumour research decreased from the year before. The Petitions Committee’s subsequent inquiry, report and Westminster Hall debate are huge stepping stones. The Government is now listening. The Government has responded. They have agreed that action needs to be taken and that the current level of funding for brain tumour research is not enough.

Brain Tumour Research will continue to call for national investment in brain tumour research to be increased to £30-35 million per annum by 2020. We will continue to be a driving force in the urgent need to tackle this historic underfunding and we are looking forward to playing a key role in the Government’s Working Group in the coming months. Together we will find a cure.”

Rebecca Harris MP then drew the meeting to a close after taking questions from patients, families, charities, researchers and fellow MPs.