Funding for research into brain tumours Contents

1Introduction

The Committee’s inquiry

1.This is the first ever inquiry by the House of Commons Petitions Committee into a subject raised by an e-petition. The Committee was set up in July 2015 and has, from the outset, aimed to give the public a direct channel to call for action from the Government and Parliament. The Government responds to all petitions with 10,000 signatures. The Committee considers all petitions with over 100,000 signatures for debate. The Committee can also seek further information, in writing or in person, about the subject of a petition, and can produce reports like this one with recommendations to the Government.

Figure 1: The journey of your e-petition.

2.On 15 September 2015, the Committee considered an e-petition calling on the Government to fund more research into brain tumours. At that stage, the petition had just under 14,000 signatures and had received a response from the Government.

3.The Committee was surprised to see that, in spite of the excellent work done by the All Party Parliamentary Group on Brain Tumours, there had not been any recent debates on brain tumours. The Government’s response to the petition did not give the Committee confidence that the Department for Health had grasped the seriousness of the concerns highlighted by the petition. The Committee therefore decided—having first consulted the Health Committee—to start its own inquiry.

4.Funding for brain tumour research is a hugely complex subject. The Committee decided that it needed to gather a wide range of evidence to allow it to make recommendations to the Government. In addition to formal evidence from relevant experts, the Committee also wanted to hear the experiences of members of the public whose lives had been affected by brain tumours. Many people have contributed their own stories to assist the Committee in its work. This report presents the evidence that the Committee has heard, and calls on the Government to look closely at that evidence and to reconsider its initial response to the petition.

The petition

5.The petition was started on petition.parliament.uk by Maria Lester (née Realf) on 3 August 2015. The petition reads:

Fund more research into brain tumours, the biggest cancer killer of under-40s:

Brain tumours kill more children and adults under 40 than any other cancer. One of those young lives lost was my brother Stephen, who was diagnosed at just 19 and died aged 26. More funding for research is urgently needed - read on for some shocking statistics from the charity Brain Tumour Research:

Unlike most cancers, brain cancer incidence is rising; less than 20% of those diagnosed with brain cancer survive beyond 5 years; in 2014, brain tumours received 1.5% (£7.7 million) of the £498 million national spend on research into cancer. At this rate, it could take 100 years to catch up with developments in other diseases.

The charity is calling on the Government and larger cancer charities to raise investment to £30-£35 million a year, and this petition aims to support its campaign.1

The petition closed on 3 February 2016 with 120,128 signatures. The image below shows a breakdown of signatures by Parliamentary constituency.

Figure 2: Heat map of signatures to the petition by parliamentary consituency

The Government’s response

6.The Government responded to the petition on 7 September 2015.2 In its response, the Department for Health confirmed the statistics referred to in the petition: that brain tumour research received 1.5% of the national spend for cancer in 2014. The Government said that, if research relevant to all cancers was excluded from the figures, brain tumour research received 3.3% of the funding granted for ‘site specific’3 cancer research. It explained that certain factors influence the level of research funding, including: scientific opportunity; the burden of disease; researchability; fundraising; and the quality and size of the research workforce. It concluded by saying that the Government-funded National Institute for Health Research (NIHR) welcomed all research applications and that its funding was not ring-fenced for cancer research.

The petitioners’ story: the Realf family

Maria and her husband, Robert Lester, sister Kathryn and Stephen

Peter and Elizabeth Realf with Maria and Stephen

7.This inquiry would never have happened without the hard work and determination of the Realf family, who started the petition. With the support of Brain Tumour Research, they have campaigned tirelessly to raise awareness and to press for action from the Government and Parliament. Losing a son and brother is a tragedy that no family should have to experience. The Realf family have chosen to devote their efforts to trying to ensure that other families do not have to suffer what they have gone through. We thank them for the evidence they have given to this inquiry.

8.We were profoundly moved by the story of Stephen Realf, as told to us by his sister and his parents. We present it here in their own words.

9.Maria Lester (née Realf), Stephen’s sister, explained to us:

“I started this petition in August 2015, a year after my younger brother, Stephen Realf, was killed by brain cancer. Stephen was an incredibly fit young man who should have had a wonderful future ahead of him, but instead he was diagnosed with an incurable tumour at the age of 19 that eventually robbed him of his ability to walk, to speak, to eat and even to get out of bed. Brain cancer is an incredibly cruel disease that can attack in all kinds of ways, potentially ravaging not just a patient’s physical abilities but also their memories and personality. My brother fought bravely for six and a half years with the support of a wonderful medical team, but he sadly died last summer aged just 26, and yet, hard as it is to say, he was supposedly one of the lucky ones. More than 80% of those diagnosed with brain cancer do not survive beyond five years.”

After Stephen’s death, I contacted the charity, Brain Tumour Research, who opened my eyes to some shocking statistics. They told me that brain tumours are the biggest cancer killer of children and adults under 40, that around 16,000 people a year are diagnosed with a primary or secondary brain tumour and, unlike most cancers, brain tumour incidence is rising. It was 23% higher for men and 25% higher for women in 2012 than back in 1970. Just as shocking were the statistics about the woeful lack of funding. They told me that last year brain tumours received just 1.5% of the £498 million national spend on research into cancer. At this rate, it could take 100 years to catch up with developments in other diseases.

Once I found out that brain tumours were the biggest cancer killer of children, I could not shake that thought from my head, so to mark the anniversary of Stephen’s death, I told his story in The Mail on Sunday’s You Magazine and set up this petition. I was very disappointed with the initial response from the Department of Health, which spoke not in terms of life and death in children, but of criteria and process.4

Stephen Realf

Ministry of Defence “Stephen was truly living his dream”

10.Maria and Stephen’s father, Peter Realf, wrote a moving account of their story on the Committee’s web thread for this inquiry:

My daughter Maria Lester (née Realf) began the e-petition concerned about a lack of funding for brain tumour research, to mark the first anniversary of Stephen’s death.

[…] At the age of 13 on a family holiday in the Lake District, Stephen saw several fast jets undertaking low flying sorties, and in that instant vowed to become an RAF pilot. Having established the level of academic achievement needed to be admitted to flying training, he set about his schoolwork with a quiet determination to achieve his goals. At the age of 17 years he was selected as aircrew and underwent the gruelling 32 week Officer training course, graduating as the second youngest Officer in the RAF at the time, aged 18 years old. A few months later he began his flying training, and loved every minute of it, going solo after 10 hours tuition, before he’d even passed his driving test.

Stephen was truly “living his dream”–flying by day, and enjoying the sports and banter that came with living in the Mess with young like-minded friends and colleagues.

All that changed in April 2008 when after a five month spell of having occasional “pins and needles” in his right arm he was finally given an MRI scan and diagnosed with a “benign” Grade 2 Astrocytoma. Overnight he lost his authority to fly, drive a car, and with it his independence. He was signed off work for two years and had to return home. Rapidly, it became clear he would most likely lose the career he had worked so hard to achieve, but what was not clear to us all at the time, was that he would lose his life too.

After diagnosis things moved quickly, and Stephen elected to have an awake craniotomy to give the neurosurgeon the best possible chance of removing as much of the tumour as possible and carry out cognitive tests during the operation, thus avoiding sensitive speech centres near the orange sized tumour in his left temporal lobe. Knowing nothing about brain tumours and the devastating impact they can have, we were very shocked when the neuro-surgeon announced “I’m afraid your tumour will re-grow, turn more aggressive, and will kill you” at a post-operative meeting. At the age of 19 our bright, funny, amazing young man was being told he had 5 to 7 years to live. How could this be? No hope? Surely the talented Doctors and Surgeons at this top teaching hospital could do something to change this prognosis? No - they couldn’t!

What caused Stephen to have the tumour? We don’t know, as the cause of brain tumour growth is unknown? Surely in the 21st Century this can’t be so? Sadly it is.

If as a society we know so little about brain tumours, how much research is being done to find a cure, improve survival rates and relieve the suffering? My research since Stephen’s diagnosis indicates nowhere near enough!

After less than two years, the 20% of Stephen’s tumour impossible to remove during his neuro-surgery started re-growing. Once again, the family were devastated and Stephen was left to dwell on his future–or lack of it.

Six weeks of radiotherapy were scheduled, followed by weeks of chemotherapy his body couldn’t tolerate, meaning on each of the three occasions chemotherapy was begun, the prescribed course of treatment had to be abandoned after 3 or 4 doses. Having lost his hair, and an interest in food, it was truly heart-breaking to see my young, previously fit son who could run 12 miles with a military Bergen on his back, now being unable to struggle the ten feet from our bathroom to his bedroom.

I was immensely proud of how, despite all that was thrown at him, Stephen kept his smile through each new setback–I don’t know how he did it. Nevertheless, this cruel disease robbed him of his life, and he passed away in August 2014, having just turned 26. He left behind a large circle of family and friends deeply affected by what they had witnessed happening to him. Stephen seemed to touch those medical professionals who worked with him too, and we are grateful to so many of them for the care and sympathetic consideration they showed him. How hard must it be to tell a patient we have run out of options and there is nothing more we can do for you? I’d like to record my thanks to them here. That is Stephen’s story, but […], sadly and unacceptably, our family’s tragedy is far from unique. […]

The nature of this disease that strikes at the very part of the body that makes us all the individuals we are is hugely devastating. How much longer is the Government going to allow it to be so woefully underfunded? The larger Cancer charities too have a role to play here, but Government cannot allow this situation to continue where survival rates for brain cancers remain largely unchanged during the last 40 years. More funding is required for research, and it is needed now.5

Brain Tumour Research

Realf family with Sue Farrington Smith

11.The Realf family have worked closely with the charity Brain Tumour Research. Sue Farrington Smith, Chief Executive of the charity, shared the moving story of her young niece, Alison Phelan, whose death motivated her to dedicate her work to campaigning. Sue wrote:

In June 2001, I lost my beloved niece Alison Phelan to a brain tumour - three weeks before her eighth birthday. My sister, her husband, Ali’s brothers and the rest of our family and friends were shocked and horrified to discover how little funding there was for research into brain tumours. Brain tumours kill more children and adults under the age of 40 than any other cancer yet until very recently less than 1% of the national spend on cancer has been allocated to this devastating disease. A disease that took Ali away from us and the countless other families that we have met along the way. Families who have lost children, children who have lost parents. Grandparents whose children and grandchildren should not have gone before them. Many of those people who survive live with side effects that often mean they cannot work and members of their family have to give up work to care for them. I now run the national charity Brain Tumour Research - 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. […]6

The public stories

12.As well as hearing from charities, clinicians and research bodies, we wanted to hear from members of the public who, like the Realf family, had personal experience of brain tumours. We believe that the impact of brain tumours on individuals and families is so devastating that it ought to be given greater consideration. With this in mind, we opened a web comment thread and invited people to share their thoughts and experiences. In just ten days we received 1106 posts.7

13.We were struck by the number of incredibly moving stories it received in a short space of time. We were deeply touched by people’s willingness to share profoundly tragic and painful stories, in order to help with our inquiry. We read messages from people with brain tumours struggling with treatments and devastating prognoses; from people who had lost children, partners, family members and friends; and those currently supporting a loved one with a brain tumour. It also heard from some brain tumour researchers, doctors and others who work closely with brain tumour patients and their families.

14.Most had, like the Realf family, been shocked at the funding levels for brain tumour research. They also shared the Realf family’s motivation of wanting to help prevent others from suffering in the future. We are enormously grateful to everyone who commented for the important contribution that they have made to this report. The full thread is available to read on the Committee’s website.8

15.Many of the contributions to the web thread echoed the experiences of the Realf family. Talking about the thread, Peter Realf commented:

[…] as you can read in over 1,000 entries on your
Website, sadly and unacceptably, our families tragedy is far from unique. It is unlikely that anyone reading those stories could fail to be moved by all that has been shared with the Committee, and my hope is that it will fire up a determination in all concerned that this situation must be improved and quickly.9

16.We were indeed struck by the common themes in many of the stories shared: difficulties and delays in getting a diagnosis; lack of treatment options; poor survival rates and the huge burden of the disease on patients and their families. Jackie Caffyn, for example, tragically lost her brother and then her husband to brain tumours. She explained how they had both struggled to receive the right diagnosis:

I lost my 18 year old brother to a brain tumour over 30 years ago, by the time he was diagnosed it was too late for him. In 2007 my husband had similar symptoms to my brother, I took him to the Doctor, she said it was a bug, I even asked her if it could be a brain tumour; she wouldn’t listen. 2 weeks later he died aged 41. So yes, a brain tumour has affected my life, it’s devastating to watch someone you love suffer & die & then to have to bring your children up without their dad.10

Susan Castle-Smith from Brain Tumour Research works closely with patients and their families. She described her experience:

As a PR manager for the charity Brain Tumour Research I have spent the last 12 months working with brain tumour patients and their families, helping them to tell their stories in order to raise awareness of this dreadful disease. One of the most surprising things has been the sheer mix of people who find themselves hearing the dreadful words: “It’s a brain tumour.” Among others, I have written the stories of a three-month-old baby who was lost just days after diagnosis, a grandma who should be here today enjoying a long and happy retirement, a woman who lost BOTH parents to glioblastoma multiforme (GBM), a young Oxbridge graduate with the brightest of futures who struggled to tell his family of his diagnosis, an emergency services worker who watched, distraught and helpless, as his father died, a gifted composer and virtuoso pianist who passed away, and a young woman who defied the odds to become pregnant during treatment and passed away when her baby was just six months old. Most of these people are strangers yet they tell me the most intimate details of their lives. I cry tears with them. I admire their family photos. I marvel at their courage. I fear for their wellbeing as they struggle with their grief. I wonder who will be next. They are in my thoughts, my dreams sometimes. It is hard to explain to them why so little investment has been made into this hideous disease; it is something I can’t understand.11

Heather D described how her son was diagnosed with a brain tumour when he was 5 years old. She explained that, although he is now in remission, her son’s life has been severely impacted as a result of his tumour. She wrote:

My son was diagnosed with a Grade III Anaplastic Ependymoma in 2009, aged 5. It took months to get a diagnoses despite multiple visits to his GP, an overnight stay in our local children’s hospital (having been rushed in by ambulance) and two visits to out of hour’s surgeries. He was SO ill and had classic symptoms but none of these doctors recognised any of them. Finally, four months after his initial symptoms appeared I marched into A&E with him and demanded answers. Within two hours, we had our answer. By this point his tumour was 9cm wide. He had two surgeries and proton beam therapy completing his treatment in May 2010. He’s been in remission ever since which I am truly grateful for every day. This all sounds quite easy but the reality is it was far from an easy journey. I am fully aware that he’s one of the lucky ones but despite being in remission he does have many long term side effects and last year had to attend over 60 medical appointments. He has numerous hormone deficiencies which affect his everyday life. He suffers from chronic fatigue, anxiety, sleep issues, severe unilateral hearing loss, speech difficulties, coordination, and balance issues. He’s gone from being a very bright boy […] to having learning difficulties due to memory problems, hearing loss and development of both ADD and a form of epilepsy. The latest blow we’ve received is that his optic nerve is now showing signs of damage. I often wonder if his doctors had been more aware and caught this sooner, would the list of side effects be so long. Had the tumour been smaller then surely the extent of the brain injury would have been less? So little is known about brain tumours that if (God forbid) he does relapse, there is literally nothing that could be done apart from more surgery and palliative care chemotherapy. I must say it’s extremely disheartening to constantly see the level of campaigning and fundraising that goes on for other cancers when so little consideration is given to brain tumours, the biggest cancer killer of our children and those under 40.12

Janet Plowman shared her family’s painful story of losing her son and described the effect of the limited treatment available for brain tumour patients. She wrote:

I lost my 34 year old son to a brain tumour this year. He was treated by his GP for migraines for 6 months. The pain became so debilitating he went to A&E. This led to an emergency operation to relieve the pressure and a diagnosis of inoperable Stage 4 Glioblastoma multiform. Prior to this he was a fit and active healthy man. We were told that his type of tumour was unlikely to metastasise. Yet despite this, the only treatment available was to include chemo which was going to have little, if no effect on the tumour but would purge his whole body and eventually kill him. His death certificate placed Brain Cancer as the fourth cause of death, after Diabetes, Sepsis and major organ failure, all caused by drugs. It’s too late for my Son, leaving my beautiful 3yr old Granddaughter and my amazingly brave Daughter-in-Law without a Daddy and Husband. He has left a huge whole in our lives and hearts. There desperately needs to be more research done into effective treatments for Brain Cancer, treatments that will cross the blood barrier. Less aggressive treatments that are available in other countries should be researched. So many young people are dying because they are not being offered any alternative treatments.13

Toni Bagshaw’s comment summed up many of the key frustrations expressed by people on the web thread:

Any family pounced upon by this deadly silent killer GMB 4 knows life expectancy is poor. A lack of research into this disease and the fact that cures, treatment and survival rates for most other cancers are prevalent and published regularly in the media. Why are brain tumours given low priority by the government? When a person young or old is diagnosed with GMB 4 it is always a death sentence and the journey for family is traumatic and devastating. The standard radio, chemo and removal of tumour treatment is not enough to ensure survival. On a positive the oncology staff within the NHS are fantastic. I am sure the NHS staff feel aggrieved too with the lack of brain tumour research. Brain tumours are NOT rare in adults or children, it isn’t connected to negative lifestyle factors, as oppose to liver disease/cancer (often alcohol related) however I am sure in this type of research and treatment is moving quicker.14

Meeting the people behind the stories

Discussion event in the House of Commons

17.Following the comment thread on our website, we invited some of those who had shared their stories to take part in an informal round table discussion at the Houses of Parliament. People shared with us their personal experiences of living with a brain tumour or caring for loved ones with the disease. A full summary of the informal discussion and the list of those we spoke to can be found in the annex to this report.

18.Those the Committee met included Anna Swabey, who was diagnosed with a terminal brain tumour in January 2015 at the age of just 23. Anna told us about her experience and explained how she had started to write her own blog, Inside my Head, partly to help others but also partly to help herself release some of her feelings by writing them down.15 Tom Greenway’s son had died at the age of 28 from a medulloblastoma, just a few months before he met the Committee. Mr Greenway shared his son’s story of late diagnosis and his subsequent treatment which had initially appeared successful. Caroline Critchlow travelled down from Orkney to share her experience with us. Caroline explained how her husband had been diagnosed with a brain tumour. She described how she had been struck by the conditions in her local neuro-ward in Aberdeen where her husband was treated. She subsequently started a charity which had raised £130,000 to help refurbish the ward. Although she supported more funding for research, Caroline was passionate that something should be done for those currently suffering. When talking about the underfunding of her local ward, she said “this underfunding we found is reflected in anything to do with brain tumours”.16 Julia Manning told us how many considered her to be ‘lucky’ because her tumour was “benign”. She described the devastation that she and her family had felt after doctors explained that her tumour was inoperable and growing. She argued that “it was a case of quality not quantity of life”.17

19.We heard in detail the problems with diagnosis, treatment, care, support, awareness and funding for research. Although everyone we spoke to focussed on the need for more research funding, the key message was that “at every stage it fails”. The whole process of having a brain tumour was described as “one big fight”: fighting for diagnosis, for treatment, for support, awareness and funding whilst also fighting for life. We heard that patients had little choice in the treatments available once they had been diagnosed.

20.Rachael Mason, whose son had 18 months of chemotherapy for a tectal plate glioma, described the treatment protocols as “barbaric.” Hannah Jones, who was diagnosed with a brain tumour at the age of 15, told us that doctors simply hadn’t developed protocols for how to treat brain tumour patients because they were considered so rare.18

21.We heard how the discovery of the funding levels for research often dealt a final blow for people who are left with little hope for possible near-future improvements. This was echoed by Maria Lester, who told the Committee:

“[…] less than 20% of those diagnosed with a brain tumour survive beyond five years, so I just think how frightening it must be to know that you have something like that and that the odds are very much stacked against you, that you are even going to be around for another five years. That lack of hope was something that came through for me on the web thread, you have all these people and the medical community would love to be able to help and treat these people and people are desperate for a cure, but at the minute we just need more funding.”19

22.No one who we met wanted money to be taken away from other cancers. They did, however, want brain tumours to be treated as seriously as other cancers and given more resources. They told us that, while survival rates for many other cancers were getting much better with improvements in awareness, diagnosis, treatment and prevention, those with brain tumours were left behind with little or no hope for the future.

23.We were deeply moved by the courage and strength of everyone we met and we would like to record our thanks to them.

1 Petition, Fund more research into brain tumours, the biggest cancer killer of under-40s

2 The Government responds to all petitions which reach 10,000 signatures on petition.parliament.uk. The Government response is published here: https://petition.parliament.uk/petitions/105560?reveal_response=yes#response-threshold

3 The site specific cancer categories are: Adrenocortical Cancer; Anal Cancer; Bladder Cancer; Bone Cancer; Brain Tumour; Breast Cancer; Cervical Cancer; Colon and Rectal Cancer; Ear Cancer; Endometrial Cancer; Eye Cancer; Gallbladder Cancer; Heart Cancer; Hodgkin’s Disease; Kaposi’s Sarcoma; Kidney Cancer; Laryngeal Cancer; Leukaemia; Liver Cancer ; Lung Cancer ; Melanoma; Myeloma; Nasal Cavity and Paranasal Sinus Cancer; Nervous system cancer; Neuroblastoma; Non-Hodgkin’s Lymphoma; Oesophageal Cancer; Oral Cavity and Lip Cancer; Ovarian Cancer; Pancreatic Cancer; Parathyroid Cancer; Penile Cancer; Pharyngeal Cancer ; Pituitary Tumour; Primary CNS Lymphoma; Prostate Cancer; Retinoblastoma; Salivary Gland Cancer; Sarcoma ; Skin Cancer ; Small Intestine Cancer; Stomach Cancer; Testicular Cancer; Thymoma, Malignant; Thyroid Cancer; Vaginal Cancer; Vascular System; Vulva Cancer.