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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)
Closed for contributions

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Total results 1106 (page 6 of 111)

Pippa Sargent

30 October 2015 at 10:01

On 17th November it will be 5 years since we lost a very dear friend to a brain tumour. Gemma was a young bright and vivacious character who had a wicked sense of humour and a real lust for life. I had the privilege of working alongside Gemma as a teacher and her courage and determination throughout her illness were simply inspirational. Seeing anyone go through such a cruel illness is hard but watching Gemma over her last year was heartbreaking, as she watched her dreams of her family and career slowly slip away. Gemma's inspiration will live on and even today it is a credit to her as a teacher that the young people she taught think of her so fondly. However Brain tumour research needs more funding so that more people like Gemma are not needlessly lost.

Clare Martin

30 October 2015 at 09:51

I have a symptomatic pineaocytoma. I would like funding in this country done into endoscopic non evasive surgery to remove these the safest way possible. I would like to see and take part in any clinical trials which are severely lacking. Professor Charles Teo.in Australia is trained in this field.

Charlotte Rooke

30 October 2015 at 09:39

Hear their stories, see their passion and address this imbalance now. Give the researchers a chance to make great leaps in treatment and diagnosis.

Ross Chambers

30 October 2015 at 09:30

This petition is well founded. Just look at the statistics. Some great work being done in this field at the moment and I beleive there's a brighter future if we keep at it.

Robert Lester

30 October 2015 at 09:26

My wife set up this petition after the death of her brother/my brother-in-law from a brain tumour last year - and reading even a small selection of comments on here shows just how important this issue is. Steve was an incredible guy who will never be forgotten by those who knew and loved him - but what a legacy it would be if we could increase funding and help thousands (potentially millions) of other people affected by this awful disease. Thanks to everyone for their support. I hope the committee can see that the people have spoken unequivocally. Please take meaningful action so that at least something positive can come out of such a tragedy.

Peter Bellamy

30 October 2015 at 09:15

Problem of diagnosis for people with behaviour problems like self-harming, eating disorders which can be due to tumour in prefrontal lobes

Katherine Turner-Payne

30 October 2015 at 09:11

My sister had a malignant brain tumour when she was 12 and she sadly died when she was 14. It has always affected me and I understand how difficult it is to treat cancer let alone a malignant tumour. It desperately needs more research so that there's hope that the success rate of surgery and treatment improves.

Naomi Marley (was Cudmore)

30 October 2015 at 08:52

Once you've had a brain tumour you realise how common but hidden they are. Everyone says "oh yes, my aunt, friend, cousin had one, etc." Mine was benign but rare and very difficult to reach (at base of my skull). So rare it took three months to find anyone else who had had one who I could talk to. I'm one of the lucky ones because I was diagnosed in time. Luckily I worked out for myself that there was something "stuck in my head making me fall over as if I'd drunk ten pints of cider"; luckily my dad is a doctor, guessed what was up and made me ask my doctor to book me a private initial appointment for £200 with a consultant as the wait on the NHS was too long; luckily my GP has a special interest in neurology and immediately thought I had a brain tumour. Luckily we were all aware, interested, pushing for what I needed and had enough money to speed things up. If I'd been somewhere else or someone else or had no funds this might not have been the case. Luckily I got the surgery I needed, from one of the best guys in the world, free on the NHS. I'm lucky that I lived in the right place (near Bristol and their incredible skull-based team who are experts and could tackle it). In other places in the country some patients with my tumour are told there's nothing to be done (I'd have been in a wheelchair within five years, dead within ten). I was 37 At the time. I'm lucky because my surgeon could organise nerve mapping before surgery and then for the nerve napping team to be there through my eight hour op. If I'd lived elsewhere I would not necessarily have had that and I wouldn't have my face working properly now (they managed to save almost everything nerve wise apart from some hearing in ine side). I'm lucky because I get brain scans regularly which means they will hopefully catch it growing back before it's too late, when and if it does. My point is that whilst I'm lucky, very lucky to even have an NHS, surely the rest of it should not be a matter of luck? Due to a woeful lack of research, intracranial epidermoid tumours remain largely unknown, deadly, terrifying, hard to treat. It was very very scary and lonely being diagnosed with one until I found a facebook group based in the US and I could finally talk to someone. It's no fun sitting down with a solicitor in your thirties making provision for brain surgery leaving you a vegetable. It's quite terrifying waiting months for the team you need and meanwhile thinking about how your face may or may not work afterwards. It's scary that no one knows what you're talking about. It's really quite traumatic to have to hide away during the wait. If you go out people who know say "it's ok though, it's benign." And this is because there's no awareness. Why on earth would they know any different? But I'm very very lucky because now I'm ok. Please add my name to any campaign for research and awareness. And what about malignant tumours? I've known 7 people die of a brain tumour in my local area of West a Somerset in the last 20 years. It's so common once you start looking. Desperately under-researched and underfunded. Is this because it's not very glamorous? I'm not sure why breast cancer gets so much more publicity. Of course the NHS is not a bottomless pit but brain cancer does seem to be rather invisible.

S M Torrance

30 October 2015 at 08:45

I have nursed in neuro surgery unit and in palliative care and have seen families being given the news of diagnosis, and heard of the effects on patients and families of their illness through the tumours progress and have seen people die at the end of their lives., often at too young an age. No words help, please help by research.

Deborah Petheram

30 October 2015 at 08:20

I posted before concerning my husband who was diagnosed Aug 14 with GBM G4, had surgery Aug 25 and collapsed with a massive seizure on 12th Oct. He is still in hospital and we have now been told that the cancer has spread in the brain. Brain cancer has to be the very worst form, your brain is what makes you a person, it controls you. When brain cancer gets a grip this changes and you get controlled by it. My husband is now a completely changed man. His personality, the way he functions and I will now in the next few weeks/months have to become his main carer. Not something I had ever envisaged at the age of 53! Professor Pilkington at Portsmouth University has been trying for years to get a drug Clomipramine to trial for BT's. He has been unsuccessful, why? because there is no money to be made by the drug companies!!! This is ruining lives and it may well be too late for my husband and many others but please look SERIOUSLY at the funding so that others in the future do not have to suffer like us.

Total results 1106 (page 6 of 111)