Brain tumours kill more children and adults under the age of 40 than any other cancer
Stop The Devastation
No apologies for concentrating on one main topic in this week’s blog and that is our Stop The Devastation campaign.
Launched on Monday it is as hard hitting as it is vital and we are both proud of it and inspired by it.
You can all help us say #NoMore to brain tumours
Please help us reach more people by taking part in our #NoMore social media campaign.
It’s so easy to join in. Simply share a selfie of your “stop hand” donate £5 and tag five friends to do the same.
Follow these 5 easy steps in join in:
1) Take a 'stop hand' photo of yourself - covering your face for maximum impact - (I have attached the one I am using)
2) Add the following text to a post on Facebook, Instagram or LinkedIn (see below for Twitter).
Please note to change the red text where needed in your post:
I want to Stop the Devastation that brain tumours have. That's why I'm saying #NoMore. @friend1, @friend2 etc Join me in sharing a selfie of your "stop hand", tag five friends to do the same and donate £5 to @BrainTumourResearch (see below) by texting NOMORE to 70085. Brain tumours kill more children and adults under the age of 40 than any other cancer. Please help Stop the Devastation.
Text costs £5 plus one standard rate message and you'll be opting in to hear more about Brain Tumour Research's work and fundraising via telephone and SMS. If you'd like to give £5 but do not wish to receive marketing communications, text NOMORENOINFO to 70085.
3) Tag us, along with 5 friends, in your post:
Facebook - @BrainTumourResearch
Instagram - @braintumourrsch
LinkedIn - @Brain Tumour Research
To share on Twitter, post your stop hand selfie with the following message:
#StopTheDevastation. Text NOMORE to 70085 to donate £5 to @braintumourrsch. If you'd like to give £5 but do not wish to receive marketing communications, text NOMORENOINFO to 70085 #NoMore @friend1 @friend2 @friend3 @friend4 @friend5
4) Post across as many social platforms as you can to help this vital message go viral!
5) Add the following text as a comment on your post: To find out more visit https://bit.ly/3gXLiID
So, we have been busy promoting the campaign this week – on Sky News, GB News, BBC radio - and we have videos which will be shown at events across the country, across the summer – they are even being shown on the grass bank at Wimbledon where crowds gather to watch the tennis.
It will no doubt be mentioned at the APPG on Tuesday 13th and once again there was a fantastic response from you last week in inviting your MPs to join us – the more the better of course, so once again the message from us to you is please could you all send the following (or a personalised version of the following) as a ‘Save the Date’ email to your MPs this weekend? Remember to Cc me ( firstname.lastname@example.org ).
Subject; - APPG on brain tumours 13 July 09:00
Dear <Your MP’s name>
The APPG on brain tumours will be taking place via Zoom on Tuesday 13th July from 09:00 – 10:00 and will be chaired by Derek Thomas MP. An invite, agenda and briefing document from the charity Brain Tumour Research who provide the APPG’s secretariat will be forthcoming in due course and Hugh from the charity is Cc’d. As your constituent, and as someone who is passionate about improving options and outcomes for brain tumour patients I am asking if you could please make space in your diary and join that meeting.
It would be hugely appreciated.
<Your postal address and postcode>
If you don’t already have it - you can find your MP’s name and address here:
At Westminster this week Colleen Fletcher MP for Coventry North East, MP received a reply for her question to the Secretary of State for Health and Social Care as to “what assessment his Department has made of the impact of the covid-19 outbreak on funding for brain tumour research.”
Edward Argar MPs response was that
“During the COVID-19 pandemic, many National Institute for Health Research (NIHR) programmes, studies and trials were paused. However, the NIHR’s funding competitions remained open throughout, including for brain tumour research. Funding continues to be invested through the NIHR to support a wide range of research from early translation or experimental medicine, through clinical, and applied health and care research.”
We require more specificity to these answers and the questions from supportive MPs need to be more specific – watch this space.
Of course, we now have a new Secretary of State for Health and we know through the lobbying of one of our key activists, who is also a constituent of his, that he is supportive of our cause and has previously donned a hat to support Wear A Hat Day – we look forward to continued engagement with Mr Javid and wish him luck in his new role.
Finally last week I mentioned our support of a letter co-signed by Drew Hendry Chair of the APPG for Terminal Illness to Justin Tomlinson MP, the Minister for Disabled People, Health and Work. This letter was in regard to scrapping the Department for Work and Pensions (DWP) six-month rule saying that the current legal definition of terminal illness is arbitrary, outdated and not based on clinical reality. Terminally ill people who have an uncertain prognosis and may survive longer than six months are currently unable to access fast-track support from the benefits system. The DWP has said that it intends to scrap the six-month rule following a review that has been glacial in its delivery and the letter asked that the DWP’s review is published as soon as possible, and proposals are brought forward to reform how the benefits system treats terminally ill people, without further delay.
This week Northern Ireland have led the way by announcing that their rules are to be eased for terminally-ill benefit claimants.
Currently, as in the rest of the UK, benefits can only be fast-tracked for patients if a clinician states their death can "reasonably be expected within six months” but the communities minister Deirdre Hargey said the criteria will be extended to 12 months, allowing more terminally-ill people to avail of the process. In a written statement on Wednesday, the minister said she would bring forward legislation to make the changes before the next assembly election is due in May 2022.
We know access to benefits for the terminally ill is something of key importance to many of you and, alongside other campaigning charities, we will keep a keen eye on the other UK governments encouraging them to follow suit.
People with a terminal diagnosis must be protected and supported but of course, ultimately our vision is to find the cure for brain tumours.
That is why we are saying #NoMore – we must #StopTheDevastation.