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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 2 of 111)

Julie Phelan

30 October 2015 at 16:14

April 2000 - I knew there was something wrong with our little girl but nobody was listening June 2000 - I feel I'm going mad we have sort medical attention but no one is taking us seriously. August 2000 - I can't breathe our nightmare has begun, more than our worst fears has been diagnosed, our beautiful girl has started a battle that no child should fight and no parent should face. Our hospital life begins. August-November- 2000 a round of hospital stays and visits takes over our lives, it feels as though we have abandoned our precious boys, although, they understand their sister needs us. November 2000 - a desperate trip to Lourdes full of sweet memories. Matthews last birthday he shared with his sister. December 2000 -with a heavy heart we paint on a smile and share our last Christmas as a complete family. February 2001 - a daddy and a brother Graham, share their last birthdays with our precious Ali. A trip to florida building memories. April 2001- following a brain haemorrhage a mummy is told on her birthday she can only hold her baby in her arms a few more months. June 2001 - the lights go out. A loneliness falls that will never leave us, our hearts broken jigsaws never to be completed, 5 dinners become 4. Life makes no sense. It should have been Alison Marie Phelans 8th birthday instead we launched her charity. We say goodbye to dreams of a future we thought we had, a black cloud never far away, but an immense pride is in place for two little boys who grew up to be fine young men, achieving a life showing strength and positivity. Our family so full of love, go on with a new normal, but always with the shadow of brain tumours close by. We do our best as a tribute to our girl and salute her by putting her importance out there, raising funds where we felt we and she were let down, by little or no funding into research.. We are left Continuing in our "Ali's Dream" Julie Phelan Ali's mummy and founder trustee of Ali's Dream on behalf of her daddy too.

Luke Sinclair

30 October 2015 at 15:58

I lost my 30 year old brother in-law to a brain tumour 2 years ago after he was diagnosed 10 months previously. He left behind his 30 year old wife (my sister), his brother, mum, dad as well as all his friends. Watching the man suffer throughout his battle with cancer was tourturous for everyone concerned. It was so unfair that he should pass away in these dreadful circumstances. Since his passing the family have set up a charity in order to raise money for Brain Tumour Research. After 2 years of operation £40k has been raised. Whilst this is a very large sum it is only a drop in the ocean when compared to the amount of funding needed to really find a cure. Stats show that brain tumours are the biggest cancer killers of humans under the age of 40 yet receives less than 1% of government cancer research funding. I really do urge the government to spend more money on brain tumour research to help stop the unnecessary suffering that people have to go through.

Mrs Janice McClure

30 October 2015 at 15:50

Having suffered from a brain tumour, it would be great to know more funding is being considered in this area. Given the position of these tumours,the outcomes are many and varied. Whilst I am at the extremely ucky end of the outcome spectrum, many more patients are not and are left with life changing and high cost incurring changes. This devastating illness deserves much more than 1% research funding!!

Hugh Adams

30 October 2015 at 15:44

I have been employed by the charity Brain Tumour Research for over five years and my current position is Head of External Affairs. In those five years I have met many people of heroic courage and professional dedication. I believe all of these people, be they patients or families of patients, scientists or clinicians have been poorly served by a lack of research funding that leaves the patient diagnosed with a brain tumour minimal treatment options and outcomes that have seen no significant improvement in a generation. The unique cruelty of this disease has driven the emotional outpourings on this web thread and for once the human suffering has come together as one voice to call for greater research funding. Enough is enough, to many parents have lost their children, too many parents have been denied the chance to see their children flourish and grow to adulthood. The model is in place and the precedent has been set – improved research funding equates to improved survival rates and patient outcomes. Our Cinderella cancer must now begin to receive funding parity. The legacy of loss must inform but we must look forward as we attempt to write the future for brain tumour patients. I am delighted to have the chance to feed into this inquiry and urge the petitions committee to help us we strive to achieve real change Our chance to make a difference is now, we must not waste it. Together we can make a difference.

Wendy Irving

30 October 2015 at 15:44

One of my paternal uncles was treated successfully for lung cancer. The doctors said he was doing well but he told them he didn't feel fine- headaches, generally feeling rough. When they finally investigated he had advanced brain tumour which was not operable. It was not secondary to his lung cancer but a primary brain tumour. He died a couple of years before his eldest brother (my father) died from pancreatic cancer. From a family of 9, four siblings have suffered from cancer (5 different organs), three have died from it. Much money is put towards the three or four main cancers but more money needs to go to some of the lesser known but with higher mortality cancers.

Dr Marilyn Fryer

30 October 2015 at 15:44

My experience relates to my husband's illness. Whilst surgery was good, diagnosis took too long and we had to be persistent about this as his six abnormal symptoms were not taken seriously by specialists. When admitted to hospital this was initially not in a cancer ward and his care needs were not well understood (e.g. he needed help with washing and dressing but this was not provided causing him distress). His care improved once on the cancer ward and follow-up care was also good but at home we had far too many different professionals involved with different advice which was quite confusing. At the end of his life, it wasn't possible for him to be admitted to the cancer ward and I think that would have helped him.

Sian Jones

30 October 2015 at 15:25

My Dad was diagnosed with a B-cell Lymphoma in 2013. His tumour was discovered late even though he had been going to his GP with various symptoms months beforehand. His GP kept sending him away with medication to treat Labyrinthitis; they never once thought about referring him to have his brain scanned. Thinking everything was OK we went on a family holiday to Florida, while we were there my Dads symptoms drastically worsened, it looked like he had had some kind of stroke as the left side of his face became droopy, he also couldn't walk in a straight line. We got back home and took him straight to A&E. After a few hours there he was diagnosed. His treatment has involved brain surgery which involved many complications. He has also had chemotherapy, radiotherapy and now that he's back home he has been given chemo in pill form. It feels like the doctors have just been throwing anything they can think of at him, even though none of the treatment can actually cure him; his tumour is incurable. My Dads lifestyle and life quality has drastically changed. He is now disabled and relies heavily on me, my sister and Mum to care for him. We have no idea how long he has left. I think it is so important and vital that funding into Brain tumour research is improved. There needs to be more effective treatment so that in the future victims of this disease can live their life to its fullest and not have to suffer like my Dad does. There also has to be a massive change in GPs awareness of brain tumours and all their various symptoms. It is not acceptable to just 'forget' about brain tumours and instead diagnose patients with something they don't have. It is essential we get more funding so we can spread awareness and knowledge, and also improve treatment so that in the future many more people can live a good quality life or can even be saved.

Nicole May

30 October 2015 at 15:18

Please give more funding for brain tumour research. I have been affected by seeing my friend Nick Cotton suffer and die from a brain tumour and have watched friends and loved ones suffer as they have had witness their loved ones try to fight this terrible disease only to sadly eventually lose their battle.

Doris Mackie

30 October 2015 at 14:45

My mother died as the result of two brain tumours and a close friend also died as the result of a brain tumour. I think we need to find out why so many people are being affected.

Michael Quirk

30 October 2015 at 14:44

I lost my best friend to a brain tumour, and I am still staggered to understand how less than 1% of government spending is spent on the number 1 killer cancer killer of children and under 40's in the UK.

Total results 1106 (page 2 of 111)