A campaigner who lost his son to a brain tumour was at Westminster as MPs launched a hard-hitting report on the unbearable burden of the disease.

Peter Realf was attending the All-Party Parliamentary Group (APPG-BT) on brain tumours as it held its AGM. And the poignant story of Peter’s son Stephen, who died at the age of 26, features in the group’s new report Brain tumours – a cost too much to bear? published on Tuesday 20 November.

The report on the economic and social impact of brain tumours is the result of a Parliamentary inquiry which received more than 200 online submissions from patients and their families and comprehensive written submissions from charities and academics. It also held oral evidence sessions during June and July from researchers, doctors, surgeons, academics, representatives of drug companies as well as brain tumour patients of all ages and their families.

Peter, from Rubgy, wrote: “My son Stephen was training to be a pilot in the Royal Air Force, going solo after 10 hours tuition, before he’d even passed his driving test. Suddenly at the age of 19, following a five-month spell of having occasional ‘pins and needles’ in his right arm, he was 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. It soon became clear he would most likely lose the career he had worked so hard to achieve.

“After diagnosis things moved quickly, and the neurosurgeon removed an 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 five to seven years to live.

“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 was 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, which his body couldn’t tolerate. Each course of treatment had to be abandoned after three or four doses. Having lost his hair, and 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 struggling to walk 10 feet from our bathroom to his bedroom.

“Stephen 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. That is Stephen’s story, but as you can read, sadly and unacceptably, our family’s situation is far from unique, and survival rates for brain cancer patients remain largely unchanged during the last 30 years.”

The key findings of the report include:

• The incapacitating nature of a brain tumour, a cancer of the body’s most important organ, can see patients faced with an immediate financial burden and the severity of the disease all too often means people contribute less to the economy and society at large.
• Costs range from loss of income through to higher domestic bills and costly home modifications. Additionally, and as in Stephen’s case, patients are required to surrender their driving licence, leading to a loss of independence.
• The experience of children, teenager and young adult patients is dismaying; they will experience more ‘social’ issues as the disease affects them at an important stage of their development and they have to bear its burden for the rest of their lives.

Stephen’s parents Peter and Liz and his sister Maria Lester have played a key role in highlighting the issues around the historic underfunding for research into brain tumours.

Derek Thomas MP for St Ives, who is chairman of the APPG-BT, said: “It was impossible not to have been personally affected by the wealth of emotionally compelling personal stories we heard during the course of this Inquiry and my most heartfelt thanks go to all of the brain tumour patients and their families who helped us with this report. For those of us who were privileged to hear this evidence first hand it was an experience that will stay with us for a very long time. Over the coming months and years, we will use the results of this Inquiry to keep brain tumours on the political agenda and improve outcomes for brain tumour patients.”

Sue Farrington Smith, Chief Executive of the charity Brain Tumour Research, said: “We are extremely grateful to Peter and Liz for their courage and commitment in continuing to share their very personal story which demonstrates why we must continue to highlight this issue and do everything we can to improve outcomes for brain tumour patients.

“Understanding the very high ongoing costs of brain tumours is vital and the Government must find additional ways to minimise these costs. We will continue to influence and find ways to minimise this unique burden through a combination of further research funding, earlier diagnosis, additional benefits, and improved post-treatment support for brain tumour patients and their families.”

For further information, please contact:
Annie Slinn at the Brain Tumour Research charity on 01908 867239 or 07591 206545 or annie.slinn@braintumourresearch.org.

Notes to Editors

Brain Tumour Research is the only national charity in the UK dedicated to raising funds for continuous and sustainable scientific research into brain tumours, and we are a leading voice calling for greater support and action for research into what scientists are calling the last battleground against cancer.

We are building a network of experts in sustainable research at dedicated Centres of Excellence whilst influencing the Government and larger cancer charities to invest more nationally.

We welcome recent funding announcements for research into brain tumours from the UK Government and Cancer Research UK – £65 million pledged over the next five years. However, this potential funding of £13 million a year comes with a catch – money will only be granted to quality research proposals and, due to the historic lack of investment, there may not be enough of these applications that qualify for grants from this pot.

We want research funding parity with breast cancer and leukaemia. We are calling for a £30-35 million investment every year for research into brain tumours in order to fund the basic research groundwork needed to accelerate the translation from laboratory discoveries into clinical trials and fast-track new therapies for this devastating disease.

The Brain Tumour Research charity is a powerful campaigning organisation and represents the voice of the brain tumour community across the UK. We helped establish and provide the ongoing Secretariat for the All Party Parliamentary Group for Brain Tumours (APPGBT). We are supporting the crucial APPGBT 2018 Inquiry into the economic and social impacts of brain tumours and will publish their report in the autumn. We are also a key influencer in the development strategy of the Tessa Jowell Brain Cancer Mission. 

Key statistics on brain tumours:

• Brain tumours are indiscriminate; they can affect anyone at any age
• Brain tumours kill more children and adults under the age of 40 than any other cancer
• Historically, just 1% of the national spend on cancer research has been allocated to brain tumours
• In the UK, 16,000 people each year are diagnosed with a brain tumour
• Brain tumours kill more children than leukaemia
• Brain tumours kill more men under 45 than prostate cancer
• Brain tumours kill more women under 35 than breast cancer
• Less than 20% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers

Please quote Brain Tumour Research as the source when using this information. Additional facts and statistics are available from our website. We can also provide case studies and research expertise for the media.