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Brain tumours kill more children and adults under the age of 40 than any other cancer

“If you fail to plan, you are planning to fail!”

“If you fail to plan, you are planning to fail!”
by Hugh Adams

The keyword for this week’s activities has been planning.

On Monday Brain Tumour Research will launch a major summer campaign to raise vital funds as well as awareness. This campaign has been being planned across the charity for several weeks and we’re keeping it under wraps until Monday but do keep checking in on our social media platforms and website to keep in touch with what is going on and more importantly join in and help it go viral.

We are also planning the next meeting of the APPG and it is time to send out save the date emails to your MP’s.

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 ( hugh@braintumourresearch.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 Name>

<Your postal address and postcode>

If you don’t already have it - you can find your MP’s name and address here:

https://members.parliament.uk/members/Commons

You contacted so many of your MPs following our #braintumourpetition and the levelling up report and many of them responded positively to your emails. It is time for them to show you what that positivity looks like – we want as many MPs as possible to attend the APPGBT because this is going to be a particularly important meeting as it will include details of a new inquiry that the APPGBT is going to be conducting. You can read the first mention of this inquiry in the minutes of the May meeting of the APPGBT.

A question asked by Seema Malhotra, and mentioned in last week’s update, has now been answered by Health Minister Edward Argar and a brain tumour question from Dr Lisa Cameron was answered by Jo Churchill this week too. Both questions and answers are below.

Seema Malhotra MP

To ask the Secretary of State for Health and Social Care, whether the National Institute for Health Research provides feedback to applicants when it rejects a brain tumour research grant application.

Edward Argar MP

Feedback is provided to all applicants, shortlisted or rejected, at key decision points in the process. An initial assessment determines whether applications are within the remit and are competitive for a particular programme. If unsuccessful at this point, feedback will be provided and the application can be resubmitted at any time

Stage one applications receive feedback following discussion by the programme’s committee. All applications, whether shortlisted for stage two submission, invited for resubmission at stage one or rejected from the programme, receive feedback. At stage two, comments from external peer reviewers are given to applicants, who are asked to submit their responses. The applications are then reviewed by the Funding Committee. Applicants receive feedback from the Committee if they are rejected.

We are working with the Tessa Jowell Brain Cancer Mission towards funding workshops for previously unsuccessful researchers to support them in submitting higher quality research applications.

Dr Lisa Cameron MP

To ask the Secretary of State for Health and Social Care, if he will publish details of additional funding that has been allocated by the Government to support brain tumour (a) research and (b) treatment following the outbreak of covid-19.

Jo Churchill MP

No specific funding has been allocated by the Government to support brain tumour research following the outbreak of COVID-19.

The Government has provided an additional £3 billion to support the National Health Service’s recovery from the impact of COVID-19, including treatment for cancer.

On the point of the workshops, this is the same point that Mr Argar made in response to John McDonnell last week and our response remains the same as it was last week “the workshops have still not happened and we are putting pressure on to make that happen.”

This week we are planning new questions to get new answers and I am also planning to upload all brain tumour Parliamentary questions and answers onto our website so you, our campaigners have an easy way to access what has been going on at Westminster.

We are adding new meetings with interested Parliamentarians to the diary every week and every week we continue to represent the brain tumour community in collaborative endeavours such as Cancer 52, AllCan and the APPG on Cancer. We are collaborating across the cancer sector and across the neuroscience sector too. We are part of cancer alliances in Scotland and Wales and we keep an eye open on areas of interest to our community that might need support. For example, this week we supported the 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 asks 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.

The coordination of meetings, the writing of questions and the production of briefing documents all require planning as do campaigns, be they political, fundraising or designed to raise awareness. Our collaborative endeavours are planned and thought through for maximum impact and effectiveness and although we remain fleet of foot and able to react to changing circumstances quickly, we are also strategic, thoughtful and organised.

So, after a week of planning, Benjamin Franklin’s quote is ringing in our ears; “If you fail to plan, you are planning to fail!” and we absolutely do not plan to fail.

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