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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 4 of 111)

Simon Tier

30 October 2015 at 12:59

Aside from the shocking statistic that the median survival rate for the most common cancerous form is just 14 months, even if it's not cancerous can you imagine a worse place to have a lump than on your brain?

Vanessa Green

30 October 2015 at 12:55

We really need symptomatic pineal cysts to be recognised in this country. So many people suffering with pain and symptoms who are being told these cysts are not symptomatic although the research proves otherwise and that surgery in other countries can relieve pain and symptoms. Some people not even being monitored for cysts growth and left with a large growth pressing inside their brains due to the conservative approach of denial being the easiest option.

Faye Richards

30 October 2015 at 12:43

Funding into this disease is disgracefully low, given that brain tumours kill more children and people under 40 than any other form of cancer. There seems to be NO urgency from the Government to help those affected by this truly horrific condition - Only a few months ago the Public Health Minister, Jane Ellison MP, stated that brain tumours were not to be included in the 'Be Clear on Cancer' campaign as more people die from other types - Disgusting. What about the 67% of children in the UK who are left with a life altering disability as a result of this disease? THIS HAS GOT TO CHANGE!

Tracey Sellens

30 October 2015 at 12:39

Our whole family has been incredibly affected by a brain tumour. Our daughter was diagnosed with a brain tumour in Sep 2009 at the age of 4 years old. She didn't show the normal symptoms that everyone thinks of such as headaches or sickness so it took 2 years of us fighting for a diagnosis. We didn't even think of a brain tumour as she was in and out of hospital with constant chest infections . She also had squint surgery on her eye at the age of 2.5yrs and again her brain tumour was not picked up by the eye clinic. My daughter was diagnosed with a Grade 1 ganglioglioma . We were so glad it was a slow growing tumour because it is in an inoperable location in the brain stem and then goes into the cerebellum and cervical spinal cord. Many surgeons have advised it is inoperable. Also because of it being a grade 1 it does not respond to radiotherapy - this just seems to cause more problems so we have been unable to try this and it doesn't seem to respond to chemotherapy either. We did try vinblastine chemotherapy every week for 18 months but didn't shrink the tumour at all. She has had many stays in intensive care especially in 2014 where she had to be intubated into an induced coma because of respiratory distress. She copes with so much but is always brave and as strong as she can be. She has just this week and posterior fossa cyst drainage as a huge cyst the size of a lime was discovered on her most recent MRI Scan. We just have to keep her as well s we can (which is hard in the winter with her chest infections) which involves having lots of equipment at home such as Bipap Machine, Cough Assist , Suction Machine, Nebulisers and various medication. We raise lots of funds for the Childrens Brain Tumour Research Centre as we know there is nothing currently out there that can help my daughter which breaks our heart. This is why research is so so important...we have to find a cure to stop these children suffering - there has been nothing new out there to help and the damage caused by the side effects of the current treatments are just as hard to cope with as having a tumour itself. I would be very happy to share my thoughts at any meetings as research is something I feel very very passionate about as I am determined to save my daughters life.

Crispin Zeeman

30 October 2015 at 12:25

A close colleague was diagnosed with a glioblastoma about 2 years ago after collapsing suddenly. She died a few months ago, despite fighting this on every front she could think of. She was determined to be a survivor and was never a victim. She was inspirational and so positive in the face of adversity. She was in her early 40s. The lack of funding over the years has been shocking and despite the fact that science keeps talking about how we are in the golden age of neuroscience, there is no 'big budget' being thrown at this disease in the way that some other brain research is receiving. I hope this inquiry is the beginning of the end of a decade of chronic underfunding for brain tumour research.

H.Glave

30 October 2015 at 12:25

I look after teenagers with cancer. I also lost my Dad to a brain tumour. The devastation caused by a diagnosis of this nature is wide spread and due to lack of funding treatments lag behind and so more and more people must suffer. Please look at funding into this unglamorous, misunderstood and terrible disease. Thank you.

Sarah Day

30 October 2015 at 12:23

I often speak with brain tumour patients and families and one thing that always hits me is just how devastating they can be and how little any of them knew about brain tumours before the diagnosis. It's important that more funds are allocated for this fight.

Carol Robertson

30 October 2015 at 12:01

Having worked with brain tumour patients for the past 15 years, I have witnessed first hand the devastation of this disease. Every patient, low or high grade is affected by major life affecting symptoms including seizures, palsy, mood changes, memory loss, poor concentration, sight/hearing issues, limb weakness, mobility problems, chronic fatigue, adults generally cant drive post surgery and often never drive again because of seizures, disability and medication. Patients often can't hold down/return to a job because of points above, they lose their friends and feel completely isolated. If ever a disease needed to be better understood and funded, it is brain tumours.

Lara

30 October 2015 at 11:59

I know two friends effected by brain tumours - more funding is desperately needed to help research a cure.

Angela brudenell

30 October 2015 at 11:52

I lost a dear and lovely friend, she left two beautiful children, please do more to fiund this awful illness.

Total results 1106 (page 4 of 111)