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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 13 of 111)

Janet Finney

29 October 2015 at 14:55

My daughter was a beautiful, active, healthy young woman who loved her life, valued every minute and lived it to the full. She worked abroad, travelled abroad and there was so much more of the world she wanted to see and experience in her life. In November 2010 at the age of just 25 she was diagnosed with a brain tumor. Following major surgery and radiotherapy the tumor was stabalized until early 2014 when it returned. Gruelling chemotherapy sessions followed. She fought with bravery,courage, strength and positivity throughout these four years and was an inspiration to everyone but the tumor robbed her of her life just a couple of days before Christmas 2014. Please provide more funding for research into this awful disease that has also robbed our family of our beautiful daughter and sister and destroyed our lives forever. As well as losing my own daughter to a brain tumor, her friend at the age of 16 died to an inoperable brain tumor. More recently, earlier this year another of my daughter's friends, lost his life at just 32 to the same awful disease. I am hearing of people all the time being diagnosed. It seems everyone who you speak to knows someone newly diagnosed. Thankyou.

May Gallaher

29 October 2015 at 14:49

My brother died of this awful tumour. Our dear friends daughter it being treated at the moment. Please spend more money finding a cure.

Hannah Kenner

29 October 2015 at 14:43

Nearly 10 years ago and while in his 50s, my father underwent surgery to remove as much as possible of a potentially life-threatening yet symptomless brain tumour. At the time of surgery doctors were not able to predict the results of the procedure and my father was left with the impression that he would be back to work within a month or two. Since surgery he has been disabled and following over six months in hospital my mother has acted as his Carer. In addition to physical changes, he has experienced personality changes and is unable to work. Clearly the greatest impact is directly on my father but we have learnt of the wideranging affect on the family as a whole - we are irreversibly changed by an unexpected event that occurred with not a single warning sign - diagnosis was a chance event as a result of a scan due to participation in an unrelated medical research project. The family are grateful that he remains with us but remain significantly affected by the radical change in circumstances for which none of us were prepared. Please, please support more research for patients, silent cases - and support for the families of patients.

Alice Lovell

29 October 2015 at 14:23

an optician referred me to hospital and an MRI showed a tumour the size of a large lemon. I'd been putting up with excruciating headaches without suspecting the underlying cause.


29 October 2015 at 14:19

This disease hit my family and me very hard in a very personal way earlier this year. Devastation is not a huge enough word for us. How can a person who is completely healthy and have no symptoms whatsoever be hit with a GBM Grade 4 with no warning signs whatsoever? So far so good with the treatment but how long before the tumour which has been successfully removed, returns? We, as a family, have looked into every single possible alternative treatment and we would go to the far ends of the earth if it meant that the special person in our lives gets the treatment needed for this horrific disease. Funding and further treatments must now be looked into. There are teams of scientists who are knocking at the door with regard to alternative treatments but the funding is just not there for them.......I share their frustration! It is too late for so many people who have endured this horrendous disease, it's time to turn that around.

Marcus Hardie

29 October 2015 at 14:16

A close friend was diagnosed with a brain tumour 14 years ago. He recently underwent his third surgery and is undergoing another course of chemotherapy. The longevity and uncertainty of the condition has made his life impossible to plan. There have been many times he has had good results only to then suffer setbacks swinging his emotions from one extreme to another. He recently had a 'wafer' implant as part of his treatment which I understand is a relatively new procedure. Any improvement in diagnosis, treatment and outcome would be hugely important for those who suffer from this condition and their carers.

Kirsty W

29 October 2015 at 14:10

My then 5yr daughter was diagnosed with a brain tumour last year. We were fortunate to receive treatment at the amazing Great Ormond Street Hospital (GOSH) under the care of incredible neurosurgeon who saved my daughter's life. At the point of discovery, the tumour was almost the size of a tennis ball and against her brain stem. Whilst my daughter has eventually made a good recovery, the treatment especially in terms of rehab post surgery has been mixed and ad hoc. But ultimately for those unfortunate enough to find themselves part of this community, we know that we are the lucky ones. Brain tumour research currently receives disproportionately low funding. The impact it has on the lives of patients and their families is enormous. It needs more funding. Better diagnosis, treatment, management and rehabilitation where possible will enable those affected by this to live longer, live better and contribute more for longer to society. I remain forever in debt to the doctors and staff at GOSH who saved my daughter's life. Thank you NHS.

Chris Crowe

29 October 2015 at 14:08

My poor brother has had to suffer this cruel disease for 14 years. I also have a friend who lost his young nephew to a brain tumour. There are so many tragic stories out there. It must be time to increase funding into research and treatment. We understand that total funding is tiny in comparison to other cancers, even though so many people are dying or being profoundly affected.

Chris Crowe

29 October 2015 at 14:02

Brain tumours appear to be so prevalent, yet so little investment is put into research and treatment. My brother has battled on for 14 years with his tumour and thankfully his bravery and stubborn optimism has kept him going. I have a friend who lost his young nephew to this cruel disease and there seem to be so many tragic stories out there. Surely it is time for more funding to go into defeating brain tumours.

Sondra Hopkins

29 October 2015 at 13:54

I have already commented but two things have cleared in my head and I feel quite excited that they can be achieved. A huge problem is diagnosis as the symptoms are so diverse and no GP is going to recommend a CT or MRI scan because a child/adult is unwell. Why not arrange for emails outlining the symptoms to be emailed to all GP practices in the country on a quarterly basis. This will increase awareness for doctors and nurses and even receptionists so diagnosis can be made more quickly. I'm sure this must be possible. Also, thinking about the Meningitis adverts which were shown nationally to raise awareness of symptoms; why can't the same be done for Brain Tumours? Everyone thinks they are rare but they are not and I feel confident that many lives can be improved and saved with early diagnosis. Thanks

Total results 1106 (page 13 of 111)