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Funding for research into brain tumours web forum

Petitions Committee

This forum is now closed. The deadline for comments was 5pm on Friday 30 October 2015.

Message to forum contributors

Thank you to everyone who has taken the time to contribute to this comment thread. We have been overwhelmed by the number of very moving stories which you have been willing to share with us. Please accept our sincere condolences to all those who have lost loved ones or who are currently suffering as a result of a brain tumour.

All of the responses posted here will be enormously helpful to the Committee’s inquiry and we are extremely grateful.

The Committee will now hold several ‘oral evidence’ sessions to continue gathering information on this issue. It will also hold an informal meeting with those affected and we hope that will include some of you.

The first formal session is on Tuesday 3 November at 2.15pm when the Committee will be speaking to the petition creators and some charities about many of the issues you have raised. You can attend or watch/listen live online.

We hope you will continue to follow the Committee’s inquiry. Please follow the inquiry page for updates, or follow the Committee on Twitter: @HoCpetitions

Huge thanks,

The Petitions Committee team

Return to the funding for research into brain tumours inquiry page

1106 Contributions (since 19 October 2015)
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Total results 1106 (page 111 of 111)

Sarah

20 October 2015 at 18:46

I was diagnosed with a low grade glioma & epilepsy (due to the tumour) in March 2014. The diagnosis has changed my life. Need much more investment into this horrible illness. Please.

Melissa Foulis

20 October 2015 at 18:30

My sister was diagnosed with a brain tumour age 22, this took a long time to be diagnosed due to being mis diagnosed and having to visit the doctors 9 times before being referred for an MRI scan, my sister had obvious signs of a brain tumour. Alexandra was treated by a child's neurosurgeon throughout, after treatment she got the all clear, however - her next check up was 6 MONTHS after getting the all clear. Within 4 months her symptoms of the tumour returned and she was refused MRI scans until her 6 month check up. At the 6 month check up my sister was diagnosed as terminal and passed w away 2 months later.

Justina Parry

20 October 2015 at 18:24

In 1998 our world was turned upside down when, aged just 56, my dad was diagnosed with a High Grade 4 Gliobastoma. Despite undergoing horrific brain surgery he died just 2 months after diagnosis. Unbelievably in September 2013 the unthinkable happened when my mum, after collapsing a couple of months earlier, was also diagnosed with the same aggressive tumour. She was just 67. Having seen the surgery my dad went through she bravely refused any invasive treatment, knowing there was no cure, to make the most of her time left with her family and friends. Her prognosis was just 2-3 months, during this time she received palliative care. Her aim was to get to my 40th birthday in November, then Christmas and my sisters birthday in January. She did all those things her way with a glass of wine in her hand and passed away in February 2014. Having seen both parents die of the same disease, 16 years apart, with no advance in diagnosis, treatment or survival rate during that time. Shocking statistics...Just 1% of the national spend on cancer research is allocated to this devastating disease. Yet brain tumours kill more children and adults under 40 than any other cancer and 20% of all cancers spread to the brain. Please help and make a difference...research / awareness / fund to find a cure.

Rosalind Laidler

20 October 2015 at 18:17

I was diagnosed with a brain tumour in March this year. Following a brain biopsy, my husband and I were told more radical surgery would not be possible because of the location. It is a grade 2 mixed cell tumour. While I do not require radiotherapy presently, I do have symptoms, pain, dizziness, tinnitis and breakthrough seizures. I have found the medical staff very helpful, but the day to day solutions are limited. I am a fairly young women and very much support the same levels of funding towards brain cancers, as other kinds. There should also be the same types of treatments as other parts of Europe, all be it such facilities are in process. But if individals require such treatments now then they should be sent abroad as required. Thank you.

Mrs carol Read

20 October 2015 at 18:16

My husband passed away with a brain tumour. He was just 61 too young to pass away, there should be more money put in to research, too many people are during from this young and old it's not fair !!! 8

Sue Farrington Smith

20 October 2015 at 17:36

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. Read our reports on national research funding http://www.braintumourresearch.org/our-reports I am delighted that this long overdue inquiry is now underway. With love and thoughts to all those families that have been affected and are yet to hear the devastating news Sue xx

Total results 1106 (page 111 of 111)