Less than 20% of those diagnosed with a brain tumour survive beyond five years
East London women’s stories heard at Westminster as brain tumour burden highlighted
Two women who lost loved ones to brain tumours were at Westminster as MPs heard of the unbearable burden of the disease.
The poignant words of Ashley Shameli’s sister Shardi, from Bow, are included in a hard-hitting report published yesterday, Tuesday 20 November, and presented to the All-Party Parliamentary Group on Brain Tumours (APPG-BT) at its meeting to launch the report.
Ashley was 22 and training to be a solicitor when he was diagnosed with a grade two astrocytoma brain tumour. He endured several operations and gruelling chemotherapy and radiotherapy. He outlived his prognosis but died at the age of 30 leaving his parents along with Shardi and their younger brother Shervin.
Towards the end of his life Ashley was cared for at the family home in Worcester and both Shardi and Shervin stepped back from their careers in order to be with him.
Shardi, who lives in Bow, East London, wrote: “The eldest of three children, I was six-and-a-half when Ashley was born and couldn’t be more proud to be the big sister to such a beautiful, happy little boy. My other brother Shervin arrived 18 months later and the three of us were extremely close to the extent that, when we moved to London for work, we lived together. We were together at the end too. I was working as a barrister and, like Shervin, I gave up my job to move back home to Worcester to care for Ashley in the final months of his life.
“Ashley had always been highly intelligent, a grade A student. We had no doubt, when he started law school, and then won a training contract with an international law firm, that he had an exciting career ahead of him. It was my saddest moment but greatest privilege to be at his side, holding his hand, when he died. He was just 30 and had so much potential. The pre-eminent surgeon Henry Marsh had given him exceptional treatment which meant Ashley lived for eight years after his diagnosis with a grade two astrocytoma. But even Mr Marsh couldn’t do anything more for him at the end.
“To see your brother go through such a horrible death was agonising. There were moments throughout Ashley’s diagnosis and treatment when we really had to stand up and fight for him, when it felt like threatening legal action was the only way to get people to take us seriously. Even at the end it was a struggle, the system didn’t seem able to properly cope with a palliative care plan for such a young man.”
Also in attendance at the APPG-BT meeting was Lydia Fenny, from Newham. Her friend, Phil Blackmore, was diagnosed with a low-grade form of the disease in August 2016 at the age of 31. His sudden death, just months later on New Year’s Eve, has inspired Lydia to campaign for more funding for research into the disease.
Lydia, a project manager, said: “Phil and I met at university and I expected him to be a part of my life for years and years to come. What’s more, I always thought he would go on to achieve great things but our friendship, and his bright future, was taken away from him by this cruel disease. It saddens me that this isn’t unique to Phil and thousands of others are bearing the social and economic burden of this disease. Since Phil’s death, I was shocked to learn that brain tumours kill more children and adults under the age of 40 than any other cancer yet, historically, just 1% of the national spend on cancer research has been allocated to the devastating disease. We can’t allow this to continue.”
Brain tumours – a cost too much to bear? is the report of a Parliamentary inquiry into the economic and social impacts of brain tumours 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.
Its key findings 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, 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.
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 Shardi and Lydia for their courage in sharing their very personal stories which demonstrate 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:
Farel James at Brain Tumour Research on 01908 867221 or 07592 502708 or Farel.James@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.