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APPGBT Inquiry 2018 - Web Forum

Brain tumours kill more children and adults under the age of 40 than any other cancer

The All-Party Parliamentary Group on Brain Tumours (APPGBT) and the brain tumour community know that having a brain tumour is a devastating and costly business for the patient and everyone around them.

The APPGBT wants to shine a light on these costs, both economic and social, which have not yet been fully set out in relation to brain tumours. There may be costs that simply aren't fair, or invisible, and if so we should take steps to highlight and address them. 

Therefore, the APPGBT has launched an Inquiry into the economic and social impacts of brain tumours to better understand the true cost of brain tumours in the UK for patients and their families as well as the NHS, from the appearance of symptoms right through to treatment and beyond. 

During Spring 2018, the Inquiry collected public submissions and written evidence from various experts stakeholders. We are no longer accepting submissions, but you can read evidence from members of the public below.

You can also read the Inquiry's Terms of Reference

160 responses

J W - Fri 30 Mar 2018

In December 2016 I had an MRI scan on my neck as a result of a car crash & at the same time they scanned my head, I was told this was routine after an accident. I had no worries about this & life went on as usual. I visited my GP on my own about another matter during January & it was then that he read my notes & after a long silent pause he told me the MRI scan showed that I had a brain tumour. What a shock.I remember getting up & walking out of the surgery without saying a w ...

Abigail Parsons - Fri 30 Mar 2018

My younger sister was initially diagnosed in 2015...three months after her wedding. She underwent her second surgery two days ago as her 6 monthly scan revealed regrowth of her tumour. She is 32 years old. We have lost the old her,the girl with no fear that travelled the world to this devastating disease. She had just started a new job as head of English at a special needs school but is no longer able to work. Her driving licence had to be surrendered. In May we are due to go on a huge family ho ...

Katie Smith - Fri 30 Mar 2018

Since my brain tumour diagnosis my husband and I have had to make drastic changes to the way we live. Before my diagnosis I was in a well paid job as Head of English in a secondary school and brought in the higher wage. I was forced to take early medical retirement because I am unable to be left unsupervised in charge of children. This, combined with the stress and workload involved in such a position meant that I had to leave a career that I loved. I believe that a person’s profession is a mass ...

Peter Realf - Fri 30 Mar 2018

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 car driving test. Suddenly at the age of 19 years he was diagnosed with a “benign” Grade 2 Astrocytoma, following a five-month spell of having occasional “pins and needles” in his right arm. As a result, he was sent to the Military Wing at Peterborough Hospital where an MRI scan showed he had a “benign” Grade 2 Astrocytoma. He was therefore referred to the Neurosurgica ...

Melanie Mirza - Fri 30 Mar 2018

I am a 44 year old mother of four, who up until June 2017 was working with the elderly 48 hours a week. Then out world was turned upside down when a ct scan showed up a brain tumour the size of a golf ball. My GP called me back after an hour of my scan. From then I suffered severe convulsions the very next day and my face dropped on one side. I was admitted into hospital. After a couple of days was transferred to a specialist neuro hospital where I underwent six hours of brain surgery. 85% of th ...

Wendy Fulcher - Fri 30 Mar 2018

My husband was diagnosed with a brain tumour in 2000, whilst we were on holiday in Canada - fortunately we had travel insurance which covered the £3000 hospital bill in Montreal, plus the costs of my extended stay in a hotel, a nurse to fly out and accompany us home (the hospital would not release him until these arrangements were in place). Once home, his brain tumour was diagnosed as a Grade 4 astrocytoma, and over the course of the next 10 months, he had surgery 6 times, a bout of pneumo ...

Bernadette Petschelies - Fri 30 Mar 2018

Our devasting journey began October 2016 after many visits to my brother's GP with complaints of severe headaches my brother fitted & collapsed in A&E . 2 weeks later Pascal was operated on followed by the diagnosis of terminal Grade 4 brain tumour .... Life as we all knew it was changed forever ... My brother can no longer drive and at the age of 46 he had to take early retirement due to his terminal illness after starting his career at M&S at the age of 16 .. Our whole family , ...

Robert Hughes - Thu 29 Mar 2018

Anna lost her battle to a brain tumour aged 3 in 2006. We shared her gruelling 15 month treatment journey where she spent over half her time in hospital receiving treatment. My wife and I were fortunate to have sufficient money and a supportive employer but for many others less fortunate than us we observed they had a real struggle with loss of earnings and additional costs. Many marriages also broke up.
For us Travel costs was circa £200 per month . Food at the hospital circa £150 ...

Nigel Beesley - Thu 29 Mar 2018

This submission relates to our experiences as a family during the illness of our daughter Lucy Kate Beesley who was diagnosed with on inoperable GBM Grade 4 Brain Tumour in December 2010 and died in March 2017 aged 25. Lucy was an extremely fit young lady and a very talented sprinter who started a speech and language therapy course at the University of East Anglia in September 2010. After a couple of months Lucy complained about finding the course difficult because of her inability to concentra ...

Tim Robbins - Thu 29 Mar 2018

My wife has a low grade astrocytoma and she has been receiving treatment for the past 10 years including radical surgery and radiotherapy. The most significant financial cost has been the loss of her earnings. At the point of diagnosis she was 46 years old and had just completed her PhD in Sociology. Our hope was that with our three children all teenagers this would allow her to pursue an academic career. She tried to work part-time but the fatigue and stigma associated with brain surgery mad ...

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