Since my wonderful sister, Margaret, passed away on June 24th, 2023, hundreds of people have been in touch to share their experience of caring for someone who has a brain tumour.
I wanted to keep you, and everyone who is involved with the brain tumour community, updated with the work that we are doing to find a cure.
Every month, my newsletter update will let you know about the work we have done and a press round up of the attention we hope to get.
And this database will help me invite everyone in the community to the important events that are to come.
If you would like to sign up just click here: https://forms.gle/usqPQb3zCbyX2UeXA
Here's a copy of our latest update
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What We’ve Done
Brain Tumour Bill
Yesterday, Siobhain took to the House of Commons floor to officially launch her Brain Tumour Bill. The 10 Minute Rule Bill set out Siobhain’s 4-point plan for revolutionising the treatment of glioblastoma on the NHS. The Bill would ensure that:
The NHS set a target of putting at least 200 glioblastoma patients into a clinical trial each year.
Every doctor training to be a medical oncologist is required to take at least one training course in brain tumours.
The pharmaceutical industry provides the drugs, that are currently licenced for the treatment of other tumours, for use on brain tumours
The NHS require that each neuro-oncology multidisciplinary team has a medical oncologist as a core member.
Siobhain talked about how hopeless she had felt when she made her first speech about brain tumours in March. This time, Siobhain told the House about how she felt that things were moving in the right direction. With a concerted effort from the pharmaceutical industry, Government and universities, we could make a huge difference to the lives of the 3,200 people diagnosed with a brain tumour every year.
You can watch the full speech here from 1:32: https://www.bbc.co.uk/iplayer/episode/m001rnnk/house-of-commons-18102023
You can also watch a clip of Siobhain presenting the Bill here: https://twitter.com/Siobhain_Mc/status/1714938956192547220
Roundtable with The Pharmaceutical Industry at Labour Party Conference
On October 8th, at Labour Party Conference, Siobhain hosted a high-level roundtable with the UK’s top pharmaceutical companies to discuss Glioblastoma. Wes Streeting MP, the Shadow Secretary of State for Health and Social Care and Professor Paul Mulholland, Europe’s Leading Brain Tumour Oncologist, also took part.
We don’t want to speak to soon, but it seems to have been an overwhelming success.
A key topic of the discussion was Dr Mulholland’s clinical trials. This is where clinicians take drugs that are already licensed to treat other types of tumours, and trial them on people suffering with a brain tumour. In the past, Dr Mulholland has struggled to gain access to these drugs from the pharmaceutical industry, given the limited commercial appeal.
At the roundtable, some of the pharmaceutical companies offered to donate the drugs to Paul’s trials. The group were very receptive and we will be meeting with the relevant companies individually to follow up their offer. Following that, we will be meeting every quarter to understand what progress has been made.
Media Roundup
Tonight with Andrew Marr
Siobhain was on Andrew Marr’s LBC show to talk about her 10 Minute Rule Bill yesterday. Andrew talked about the two people he knew who had passed away from a glioblastoma, and how common the disease seemed to be. Siobhain talked about her own experience of travelling to Germany to access treatment, and how many people have to crowdfund to fund these trips.
You can listen back to the show here at 48 minutes:
https://www.globalplayer.com/catchup/lbc/uk/b8FPjWb/
The Observer!
Siobhain was back in the newspapers over the last few weeks, talking about her fight to treat Margaret's brain tumours which took her to a small European clinic in Düsseldorf. Siobhain talked about the appalling short life expectancy for people diagnosed with a brain tumour (9 months), and what she is doing to change that.
You can read about it here: https://www.theguardian.com/society/2023/oct/08/margaret-mcdonagh-siobhain-mcdonagh-mp-brain-cancer-glioblastoma
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Thank you for reading!