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.

 

 

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!

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 18^th 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 14^th 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 18^th when the debate takes place!

EXCTING TIMES AHEAD!!

A xxx

 

POST 27: EAT YOUR HEART OUT GABBY LOGAN!

 

Let me cast your mind back to POST 15 where I shared my Bucket List with you all. I listed one of my aims:

“Have a taste of my dream job as Rugby pitch side reporter/Sports presenter – Linked in with my love of rugby and sport in general, I have always said I want ‘to be the next Gabby Logan’ or the like. I think being able to combine a true passion in your line of work, must be a real joy.”

 

Well, a certain Lewis Moody may have just been aware of this dream…

The Lewis Moody – one of the greatest rugby players, ex England Captain, England and Leicester Tigers LEGEND, rang me to tell me that he and his Foundation had organised a special day for me at the Tigers vs. London Irish match on Sunday 28^th February, and that I would be interviewing a player! Whaaaaaaaaat?!

As I have posted on here, I have had the honor of meeting Lewis before, however, as exciting as the content of our conversation was, I was still in shock that my all time favourite player had RANG me!

As the day came ever closer and Lewis sent me more details across regarding what was in store for me at Welford Road, I couldn’t contain my excitement.

I simply had to share this day with you all…

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Andy, my parents, and I (all MAD Tigers fans) met Lewis an hour and a half before kick off. He had sorted us with press passes and we were able to go into the press room and see how a match day pans out for the guys covering the game. I had the pleasure of meeting Bleddyn Jones, rugby commentator for BBC Radio Leicester, whom I listened to a lot when I was at university and couldn’t get to as many games as I would have liked, similarly for away matches. Bleddyn is a Tigers legend himself, making 333 appearances. I tapped into his expertise for my post match interview ;).

We then made our way to the family room where the families and partners convene before and after matches. I had the joy of meeting Geordan Murphy’s wife and their gorgeous baby, Rex – broody much Anna?! ❤

Andy and my parents made their way to our seats in the press box, and Lewis took me down the tunnel and on to the pitch – WOW! I never quite realised how amazing the fortress that is Welford Road looked from down there; especially with the incredible Tigers fans’ cheers resonating, waiting for the team to run out on to the pitch! After some selfies in the dug outs, introductions to more Tigers legends, ‘Smoke on the Water’ started blaring through the speakers and the ROAR around the stadium and the clapping began….the lads ran on to the pitch – COME ON TIGERS!!! I have never been so close to the action! AHHHHHHH! 😀

Lewis and I then joined Andy and my parents in the press box. It was great to get a press point of view of the match, and it was great to be sat in the Crumbie stand that always produces the loudest support. Every fan was especially behind the lads on Sunday; after losing the three previous games on the trot, earning a bonus point win against London Irish was crucial to keep us in contention for a top four finish to keep us in the running to become Aviva Premiership Champions.

I have to admit I was pretty nervous about having to interview a player if they lost…the last thing they would want to do would be to talk to me!

Fortunately, the tries came rolling in! Pheeeeeeeeew!

My brother was absolutely gutted to not be able to join us – Lewis Moody being his all time favourite player too! Having told Lewis this, we sent Matt a selfie and Lewis recorded a video message for him too – my brother’s response “What a ***king LEGEND!”.

 

Game over, and a bonus point 47-20 win under our belts, Lewis, Andy and I headed back down to the media room. I was able to watch all the post match interviews with the Directors of Rugby and met our main man Richard Cockerill.

I had told Lewis that my favourite player was a new arrival to the club Telusa Veainu. He joined Tigers following the World Cup where he represented Tonga in all four of their pool matches and evidently caught the eyes of the powers that be at Leicester. Since joining the club he has fast become a fans favourite (certainly mine!), scoring some sensational tries and adding some real class and excitement to our back line.

Telusa then appeared in the press room and was ready for his interview…EEEEEEK! I was nervous now! I felt like an ACTUAL reporter and the lights were bloomin’ bright and hot! I managed to get through my questions, only stumbling slightly under the pressure I had put myself under! Lewis and Andy were taking the micky out of me though as I said I fumbled my words because Telusa was staring straight into my eyes! Andy promptly told me I shouldn’t get all flustered like that, certainly not as a consequence of looking into another guys’ eyes! HAHA! Sorry babe!

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Lewis had kindly bought me a new Tigers shirt to get signed, so we then made our way up to the hospitality/corporate suites to meet some more players, via the changing room 😉 to get some signatures, and have a drink!

 

 I was well and truly in my element!

 

I want to take this opportunity to thank the Leicester Tigers, the players and the coaching team for making this day so special for me – every person I spoke to could not have been nicer or more willing to take some time to have a chat with me. They all took such interest in my life and wished me well for my continuing treatment.

A special mention must go to Telusa for being so lovely to interview and a great laugh! Although he did tell me he doesn’t particularly like being interviewed and that he too was nervous – sorry about that!! 😛

 

Nobody however, deserves more of a thank you than Mr Moody himself. From meeting us all at 1.30pm, up until Andy and I left at around 8pm, Lewis was with us ensuring I had the best day ever. He truly epitomises a sporting legend and is a real role model for up and coming players; he has already proven his worth on the pitch and is deserving of every accolade and trophy he has gained, but my goodness, what a genuinely kind, charismatic, selfless, TOP bloke he is!! I seriously cannot begin to describe how good of a day Sunday was, and that is all down to him. The mere fact he decided to set up The Lewis Moody Foundation alongside his wife, Annie, in the first instance shows what type of guy he is – but seriously Lewis, I cannot express how grateful I am to yourself and your charity for these memories that I will now cherish. Being an avid fan from the age of 8, this day you arranged for me– just wow! I have made it more than clear that I am more than willing to do anything I can do to help with his Foundation and I would love to do some fundraising together in the future.

Now roll on another HUGE win at home to Exeter this coming Sunday!

My ROAR will be louder than ever – TIIIIIIIGGGGEEERRRRRSSSSSS!