Funding for brain tumour research web forum

Has a brain tumour affected your life in any way? Following an e-petition, which was started on and reached over 14,000 signatures, the Petitions Committee is investigating the subject of funding for brain tumour research, and wants your views.

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


1106 Responses to Brain tumour research web forum

Nat mitchell says:
October 30, 2015 at 02:39 PM
Invest, for my 7 year old and all the babies. Our children are dying due to a lack of investment.
Gary says:
October 30, 2015 at 02:31 PM
Please help fund brain tumour research. I feel not enough is being done about this

Lexine Keeler says:
October 30, 2015 at 02:11 PM
It took 17.5 weeks for my partner to be diagnosed with his brain tumour. Due to its type he had part of his brain removed. There needs to be more research to prevent trauma to parts of the healthy brain. Watching my partner go through hell has been soul destroying. We constantly face the unknown because even the doctors are still trying to figure out exactly how his tumour is developing. We are constantly in watch and wait we are sat waiting on a hospital ward for him to go in and have more surgery, we are last on the list. He is dehydrated and hungry. We need more research. We need more answers so that we can deal with the effects of brain tumours better.
Vicky Ringer says:
October 30, 2015 at 02:04 PM
My little boy Levi tragically died of a brain tumour, age just 6 years old. He was diagnosed after his symptoms were missed by a consultant paediatrician. Levi was in fact diagnosed when WE demanded a CT scan, frustrated and concerned that although we were repeating ourselves, we weren't being heard .The scan revealed the devastating news that Levi had a brain tumour on his brain stem and cerebellum. We had been irreversibly let down by a hospital system and staff who lacked awareness about brain tumours. We had been told several times there was 'nothing to be worried about' previous to Levi's diagnosis - this could not have been further from the truth.

Levi died in my arms just 6 weeks after diagnosis, devastating the lives of his family, beyond words or repair.

Since losing Levi in 2006, we have established Levi's Star Children's Brain Tumour Charity and recognise time and time again the need for greater awareness about brain tumours, the need for early diagnosis and the need for more research into treatment and cures for brain tumours.

For us, nothing can be worse than losing a child and the knowledge that brain tumours STILL remain the biggest cancer killer of children in the UK is simply not acceptable. The brain tumour community needs to be heard and heard now. How many more children must suffer the devastating effects of a brain tumour or lose their precious life due to lack of brain tumour research funding and awareness ? The government needs to listen, hear, understand and act NOW!
K Pyner says:
October 30, 2015 at 01:50 PM
My 2 year old was diagnosed in March this year with a grade 4 medulloblastoma. After 5 weeks of going backwards & forwards to the GP and even though she showed classic signs of a brain tumour, It wasnt until i insisted on being referred to a paediatrician that we were taken more seriously. After finally receiving an MRI we were rushed to a more specialised hospital over an hour from home. The last eight months (which we have mainly been in hospital) she has undergone numerous brain surgeries, an intensive chemotherapy protocol & currently High Dose Chemotherapy. She has been left with numerous physical difficulties but is an inspiration to us everyday. Serious research needs to be done into the chemotherapy drugs that are currently used & their side effects & emphasis on early diagnosis
Tim Green says:
October 30, 2015 at 01:41 PM
I lost my best friend to a Brain Tumour - the day before he turned 16!! This is no age!! More research and more funding may have given him more of a chance - lets change this now, while we have the chance!

Brain tumours kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research is allocated to this devastating disease.

This is unacceptable!
Carole Hughes says:
October 30, 2015 at 01:38 PM
Our daughter Anna died from a brain tumour when she was only 3 after a gruelling 15 month battle . Tragically the majority of children with brain tumours do not survive and if they do their lives can be severely compromised. It is a cruel disease and causes so much suffering. Tragically funding into brain tumour research is very low compared to other cancers. Please let it be the turn of Brain Tumours to get more support.
Sandra McKillop says:
October 30, 2015 at 01:33 PM
It's my sister’s birthday today and Mum is not here to join in the celebrations. Another event, another day in which we feel Mum’s absence and miss her love, her kindness, her chat and just being with her. Yes, the loss I feel is possibly no different from others who have lost dear ones to any disease, but the impact that a brain tumour diagnosis has on the person, their family and friends ‘is different’. The Petitions Committee that ‘... will decide whether it wants to press for any action from the Government' just need to read these stories. They just need to look at the stark facts and figures on brain tumours for Northern Ireland and across the UK .. the incidence, prevalence, mortality and survival facts and figures. They just need to look at the demand for the excellent information and support services provided by volunteer led charities like Brainwaves NI. They just need to look at the work of Brain Tumour Research and its member charities in raising awareness and their fight to fund brain tumour research. The diagnosis of a brain tumour ‘is different’. It is time to act. I urge the Petitions Committee to press for action from the Government.
Robyn says:
October 30, 2015 at 01:28 PM
I cannot express the importance of funding Brain tumour research. It is vital that we carry on funding the on going research into Brain tumours so that we can end this horrid suffocating disease. Too many of our loved ones are effected and lossed. It needs to STOP!
Tania Stobbart says:
October 30, 2015 at 01:14 PM
There has to be more research carried out on brain tumours to act quickly when a patient is diagnosed, also to teach hospital staff about tumours & the diseases, problems suffered post surgery.