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

The APPG launches its Pathway to a Cure inquiry

The APPG launches its Pathway to a Cure inquiry
by Hugh Adams

It was APPG time again this week and the briefing document for attending MPs on Tuesday is here.

The role of honour of Parliamentarians who attended is:

Derek Thomas MP (our Chair and Champion), Joy Morrisey, Ben Lake, Lee Rowley, Alex Sobel, Siobhan Baillie, Holly Mumby-Croft, Jane Hunt, Mark Pawsey, Hilary Benn, Mike Amesbury, Ruth Cadbury, Stephen Timms plus our great friend Lord Polak whose own brain tumour story can be read here.

Apologies were received from:

John McDonnell (who sent a representative), Huw Merriman (who sent a representative), Fiona Bruce (who sent a representative), Baroness Cotes, Paul Bristow, Greg Smith (congratulations Greg on the recent addition to the family), Jim Shannon, Peter Aldous, Sir Charles Walker, Lord Carlile, Bim Afolami, Lord O'Shaughnessy and Johnny Mercer

Offers of Parliamentary questions focused on brain tumour research were received from several MPs (including ministers) too.

Once again huge thanks to all of you for all that you are doing to support our work.

We know why you are doing it – we feel exactly the same and our numbers are growing both outside and crucially inside Westminster

You’ll see from the briefing document that singer Tom Parker was due to address the APPG but sadly this did not happen – he did meet with me ( Hugh – Head of Stakeholder Relations), petitioner, Maria Realf, Derek Thomas, Holly Mumby Croft and Lord Polak the next day though. We look forward to future engagements between Tom and the APPG and in supporting his campaigning endeavours. We are full of respect for the difference for our community he is seeking to make following his own diagnosis.

The meeting, aside from the occasional technical glitch went well. We so look forward to a time when we aren’t so reliant on Zoom and we can assemble at Westminster and make our points face to face. I am hoping that some oral evidence sessions for the inquiry that was launched on Tuesday will be in person.

The inquiry is provisionally titled ‘Pathway to a cure – breaking down the barriers.’

When it comes to vital research funding for this devastating disease, influential reports have been written, Parliamentary questions have been asked and comments made in Westminster debates over the years but funding issues for brain tumour research continue to be raised and barriers are still there. Now, though, the will for real political change is unmistakable.

Chair of the APPGBT, Derek Thomas MP said on Tuesday that the aim of the inquiry will be to provide clear recommendations and an action plan to address these barriers and to seek to move from “talk to action”, focusing on solutions rather than problems.

Alongside funding for early-stage research, areas that will come under scrutiny will include repurposing of drugs and novel drug delivery plus the quality and size of the brain tumour research workforce.

The inquiry panel is likely to include Parliamentarians who are supporters of the APPGBT, representatives from brain tumour research funding charities including Brain Tumour Research Chief Executive Sue Farrington Smith MBE, senior clinicians, a pharmaceutical industry representative and an academic from an allied neuroscience.

Timings will be made public in due course but the format of the inquiry is likely to be two evidence sessions per term for the duration of the 2021/22 parliament with the net cast wide for written evidence to ensure completeness, with invitations for key stakeholders being given to provide oral evidence to the panel.

These are exciting times.

Milestones are being reached and things that twenty years ago seemed impossible now seem achievable. The move from talk to action, from sympathy to strategy is vital. The political will is there, so now is the time for the short-, medium- and long-term plan.

Brain tumours are uniquely complex and the pathway to a cure is what the APPG’s inquiry will discover and as the collective voice of the brain tumour community we can design, build and walk it together.

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