POST 28: READY, STEADY, DEBATE!

As promised, this post is to keep you all in the loop.

 

Post 23 announced the fantastic news that the Petition to gain more funding for research into brain tumours had gained over 120,000 signatures of support and as a consequence had secured a debate in Parliament. The date for this debate was to be announced after the Petitions Committee had published their report, detailing their findings from the first every inquiry to be launched by this newly formed Government Committee.

The Petitions Committee’s report has now been published. I want to highlight their key findings, let you know what happens from here, and ask for a huge favour from you all in the process…

 

Quoting the report:

This was the first ever inquiry by the House of Commons Petitions Committee into a subject raised by an e-petition. The Committee was set up in July 2015 and has, from the outset, aimed to give the public a direct channel to call for action from the Government and Parliament. The Government responds to all petitions with 10,000 signatures. The Committee considers all petitions with over 100,000 signatures for debate. The Committee can also seek further information, in writing or in person, about the subject of a petition, and can produce reports like this one with recommendations to the Government.

Funding for brain tumour research is a hugely complex subject. The Committee decided that it needed to gather a wide range of evidence to allow it to make recommendations to the Government. In addition to formal evidence from relevant experts, the Committee also wanted to hear the experiences of members of the public whose lives had been affected by brain tumours. Many people have contributed their own stories to assist the Committee in its work. This report presents the evidence that the Committee has heard, and calls on the Government to look closely at that evidence and to reconsider its initial response to the petition.

 

 

As you may already be aware, I was one of the 20 members of the public who were invited to share our experiences with the Committee back in November. I was absolutely delighted to be able to take part in this inquiry, and to see that points I raised and my experiences have been included in the report. I am even more delighted after having read the complete report and, most notably, the recommendations that the Petitions Committee have made to the Government.

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The full report is available to read here. But I want to highlight the key conclusions they came to and the all-important recommendations to Government.

The report was split into several parts, namely: Awareness and diagnosis, Funding levels, Barriers to research, Setting research priorities, Burden of disease, Availability of non-therapeutic drugs.

The Committee’s findings in these varying areas concluded:

116.For too long, funding for brain tumour research has been inadequate and not given sufficient priority. Britain has dedicated researchers in this area but is losing young, talented people because they are unable to access research funding. The country is losing the chance to be a world leader in this area and is letting down patients and their families.

117.The Committee has heard throughout this inquiry that patients with brain tumours are failed at every stage—from diagnosis and treatment to research funding. There has been little improvement in the prognosis for brain tumour patients over the last 30 years. Brain tumours are often considered to be rare, but they are the biggest cancer killer of children and the most fatal cancer in terms of life years lost—and the incidence of brain tumours is on the rise. The number of life years lost ought to be a major factor in allocating research funding, but it is not given sufficient consideration. Where there has been significant investment into research, the outcomes for sufferers of other cancers, such as breast cancer and leukaemia, have improved dramatically. No one who took part in this inquiry wanted funding to be taken away from other cancers. What they wanted was an equal chance for some progress.

118.Funding for site-specific brain tumour research comes mostly from the voluntary sector. Charities have done incredible work to fund brain tumour research and we commend them for that. However, they face difficulties in fundraising, not least because of a lack of public awareness. The Government must not leave charities to tackle this devastating disease alone.

119.Sole responsibility for deciding on priorities for medical research and for identifying diseases with unmet need should not be left to the voluntary sector. The Government could and should take a greater lead: by playing a role in identifying gaps in funding, by setting priorities for research and by supporting the development of the research workforce required to give those suffering with a brain tumour some hope for the future.

 

 

I would also like to highlight some quotes from Maria Lester, the lady who launched the petition in the first instance alongside support from the charity Brain Tumour Research.

“For too long fundraising has been driven by the cancer community and the Government must step up and invest its fair share. There is no time to waste. It is too late to save my little brother and I will have to live with that loss for the rest of my days, but with improved funding just think how many other brothers, sisters, fathers, mothers, friends and children could still be saved”.

 “At the moment more than 80% of those diagnosed with brain cancer don’t survive more than five years”.

“It’s about life and death, not criteria or process”.

 

I want to take this opportunity to thank Maria again, and the rest of the Realf family for so courageously and selflessly taking this matter into their own hands in memory of Stephen. He sounds like an incredible man and I only wish I could have met him. I thank you for taking this bold step on behalf of brain tumour patients like myself, I am very grateful. You should be so proud that all your hard work has resulted in this fantastic report!

Realf Family

I would also like to thank all of the Members of the Petitions Committee for all their hard work, empathy and dedication in producing this report. As a patient, it has filled me with great hope for the future.

 

Now here comes the part where I ask for support…YET AGAIN, I am sorry!

 

The date for the debate in Parliament on this issue has been announced: Monday April 18th 2016. We need to ensure that our MP’s attend to maximise the impact this debate can make.

 

I am asking you so VERY politely 🙂 if you would be able to contact your MP. Now, I realise all of you are extremely busy, and thankfully, Brain Tumour Research have made this task quite simple, as they have kindly drafted a template of a letter/email/content of a phone call that you could send/make to your MP.

I would hate for all these efforts to fall by the wayside and for us to receive a similar response from Government that we did after reaching 10,000 signatures. Having your MP in attendance could be SO vital.

 

If you click this link it will take you to their webpage where you can download the template. They ask you to add your “own story” where indicated. If you have your own connection to this illness, please tell your MP what it means to you; it is personal experiences of their constituents that will lead them to attend. If you know only of brain tumours because of reading my blog, then please feel free to include your personal opinions about my journey. I have written something simple below to help those of you who fit in to this latter option:

My own interest in this petition and upcoming debate came about because a friend of mine, Anna Swabey was diagnosed with a terminal brain tumour at the mere age of 23 years old. Anna was fit and healthy prior to suffering a seizure at home and had her whole life ahead of her. In January 2015 however, this all changed and Anna was told she had three years left to live. I have followed Anna’s journey thus far by reading her blog (www.annaswabey.wordpress.com) and have helped/supported/watched her fundraise over £45,000 for Brain Tumour Research Campaign. Learning all the dire statistics and reading that brain tumour patients, like Anna, are failed at every stage, I urge you to please attend this debate…

 

If, like I was, you are unsure who your MP actually is, you can find all their contact details here.

I thank each and every one of you who does take the time to contact your MP. If you are so inclined, please can you let me know if you do indeed get a response.

 

 

I was unfortunately too poorly to attend the launch event of the report publication on Monday 14th March; my immune system had taken a bit of a battering after month nine of chemotherapy. However, I am most certainly going to be attending Parliament on April 18th when the debate takes place!

EXCTING TIMES AHEAD!!

A xxx

 

POST 21: LEICESTER TIGERS HELP KICK BRAIN TUMOURS IN TO TOUCH

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As I have told you guys from POST 1 on this blog, I am a massive rugby union addict, and you all know by now, my team is the Leicester Tigers. I have been going to Tigers games home, away, and abroad since I was eight years old, and even with Trev in tow, that is not set to change anytime soon!

 

 

So you can imagine my delight when I saw this article crop up on their website this week: Show Support for Brain Tumour Campaign. Although, upsetting to hear the loss of Michael, another Tigers fan, who sadly passed away at the mere age of 27, what his family are doing to help this campaign in his memory is remarkable.

If you have been following my blog, particularly over the past few months, you might be aware that I have heavily backed the online e-petition calling for more funds for brain tumour research that was launched by Maria Lester in memory of her brother Stephen, who sadly lost his life to the disease in 2014. Months ago I signed this petition and after reaching 10,000 signatures, the petition gained a response from government, unfortunately, not the one we were looking for (this response can be found on the petition page).

Thankfully, the newly formed Petitions Committee decided that this cause was worth looking into further – particularly as it was not on the agenda for the Health Committee. They wanted to gain perspectives and evidence from charity campaigners, clinicians, and patients alike to best decide if this issue should be debated in Parliament.

The Committee launched an online web forum for people to share their experiences and to show their support for more funding into research. This closed on the 30th October 2015 with over 1100 comments left on the chat; one of those comments being my own:

“In January 2015, at 23 years of age, I was diagnosed with a Grade 3 glioma anaplastic astrocytoma and was told I had, on average, 3 years to live. My whole world changed. Although I have been offered treatment and have undergone radio/chemotherapy and I am on chemotherapy again for a further 12 months, the future looks bleak. Unavoidably, this awful disease will not only take my life, but will destroy the lives of my mother, father, sister, brother, partner, niece, nephews, aunties, friends….my, the list goes on! And since being diagnosed, I have unfortunately come across and met younger, young and older people in the exact same situation; who too worry what they will be leaving their families to deal with when they are gone. I chose to try and not dwell too much on this horrific news and to turn it into some form of positive; I want to make a difference to lives like mine, and to those who are yet to be diagnosed. I decided to start writing a blog called Inside My Head (www.annaswabey.wordpress.com) detailing my life with a terminal brain tumour – I saw this as a way of helping myself, others alike, and to raise awareness of this severely underfunded cancer (of which I knew nothing about until my diagnosis). Off the back of its popularity, I began fundraising for Brain Tumour Research Campaign (to date I have raised £35k). Research into brain tumours is my only hope of living. I will not stop fighting for more funding into research until my last breath! Forgive me, for I am not a doctor, a scientist, and I by no means profess to be an expert in the field at all, but if brain tumours kill more people under the age of 40 than any other cancer – why does research into brain tumours receive a mere 1% of national cancer research funding?! …It does baffle me. My diagnosis has changed my life forever. The only change I wish for the future is that there will be a new found hope; different treatments, and ultimately, the best ‘C’ word I will have ever heard – A CURE.”

 

Consequently the Committee invited 20 of the people who commented on the web forum to a roundtable discussion at Westminster. I was delighted to be one of those people. On the 17th November I went to the Houses of Parliament to share my experiences with the MPs on the Committee. I thought the day went very well and the MPs seemed keen to listen and were extremely empathetic. I sincerely believe this is a huge move forward for not only brain tumours on the political agenda, but also for democracy in general; obviously I feel very honoured to have been given the opportunity to be a part of that. We now await the decision of the Committee…

 

What will give us added strength however, is the more signatures we can accumulate on the e petition.

We have until February 3rd to try and reach 100,000 signatures, which will guarantee the issue of brain tumour research funding to be debated in Parliament.

 

This is my final plea to ALL who read this to sign the petition. Share it with the person you are sat next to perhaps, or a family member? Let’s get over this final hurdle!

Whatever comes of this petition  it will more than likely be too late to make a difference to my prognosis however, I am almost certain it will change lives of so many others!

This is why I sincerely want to thank my rugby club, Leicester Tigers for getting on board this campaign – it means so much! #TigersFamily

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