With Westminster in recess, it is a time for holidays, and for planning.
There is work to be done in supporting ‘Pathway to a cure – breaking down the barriers’ the recently announced inquiry that the APPGBT will be conducting, and we are also working on more Parliamentary questions (PQs) to send in September to all of the supportive MPs we have gathered, and who have told us they would be happy to ask questions on our behalf.
Thank you to you all for raising the number of involved Parliamentarians during the past year.
Sometimes it can be disappointing when your constituency MP doesn’t join an APPG meeting, particularly if they have indicated that they intend to, but things happen, plans change and they are the most extraordinarily busy people. A Parliamentary question is such a useful, alternative way for a Parliamentarian to demonstrate their support and of course it contributes to our momentum and necessitates an answer from a minister which will almost inevitably provoke another question from us.
Here’s the recent question from Sarah Olney and the ministerial response;
Sarah Olney MP To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support the families and friends of patients with brain tumours.
Jo Churchill MP The Improving Access to Psychological Therapies (IAPT) mental health services can be accessed by adults with physical health problems, including those with brain tumours, as well as their family and friends whose mental health may be impacted as a result of this physical illness. Many IAPT services have strong links with a range of health and care settings to ensure that patients and carers receive the right support as quickly as possible, including secondary care and the patient groups within it.
Interesting here that support is seen solely through the prism of mental health – which of course is vital – however we would argue about the role of research and campaigning in supporting brain tumour patients and their families.
At the start of the pandemic, we made this argument as we saw much of the focus on the impact of Covid being on how it affected ‘frontline’ charities. We are frontline service because as our activist Peter Realf said at the time, “Research gave my son hope, the campaigning we have done since Stephen died and the impact we have had has given me the belief that my son did not die in vain. When my son was diagnosed in 2008 his oncologist said: “who knows what we will know about brain tumours in 10 years’ time”. This gave Stephen hope, research gave him hope, he hoped things would change, improve and save him. They didn’t but my hope for other families lives on through research.”
Other things to plan for and consider over the summer holidays are:
- The Health and Care Bill which has entered the Committee stage and will sit on 7th September and 9th September. This provides an opportunity for PQs and briefings to be drafted for our Parliamentary champions.
- The Spending Review which is likely to occur in late Autumn. We plan a letter to the Chancellor, Rishi Sunak on the opportunity for investment in research and
development ahead of the budget. We will also draft PQs on the back of this and then monitor any announcements relating to research.
- On the back of the recently announced UK global innovation strategy, we are seeking to engage with the Business, Energy and Industrial Strategy (BEIS) Committee Work – indeed we recently met with the committee’s Chair.
Although usually a quieter time of year there has been no shortage of meetings this week and we have spoken with a member of the House of Lords who has a very strong reason why he is offering his family’s support of our work, we have met with a related professional body who want to work alongside us in the public affairs arena plus a meeting is in the diary to talk with a multinational pharmaceutical company who are trialling a new glioma drug, and we are very much looking forward to working with and campaigning alongside a new charitable foundation, with a charismatic leadership team, being set up in the North West.
As it is holiday time, I thought you might like to check out the worldwide cancer research situation – even if you aren’t visiting your favourite country outside of the UK this year you can find out about their levels of cancer research funding and their brain tumour support networks using these links:
https://canceratlas.cancer.org/taking-action/research/ This is quite focused on the US and the National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, that is the nation’s medical research agency — “making important discoveries that improve health and save lives.”
Brain - EORTC : EORTC (after the US, EORTC represents the largest collaborative government supported program of dedicated research into Brain Tumours)
theibta.org/brain-tumour-support-advocacy-and-information-organisations/ IBTA advocates for the best treatments, information, support and quality of life for brain tumour patients, offering them, their families and carers hope – wherever they live in the world. This link leads to information on their worldwide support network
Research is a worldwide collaboration but for Brain Tumour Research our vision of a cure begins with UK based discovery science and as we plan for the next Parliamentary term it feels that the post pandemic mood of celebrating science, research and innovation could work in our favour.
We did things differently with Covid because it was unique, money was made available, and barriers were broken down. Brain tumours are unique so let’s treat them differently too.
Finally, we would like to congratulate the Life President of Brain Tumour Research, Sandy Saunders, who has been invested with the prestigious British Empire Medal (BEM). On the day of his investiture Sandy said: “I feel very privileged. It’s a great honour and national recognition of all the dedicated work carried out by the entire team at Brain Tumour Research.”
Losing his eldest daughter, Diana Ford, to a brain tumour in 2002 led Sandy and his family to set up the Diana Ford Trust to fund research to find a cure for the disease. In 2008, the Diana Ford Trust re-registered as Brain Tumour Research to reflect the coming together of its founding partners, using its cash deposits to provide seed-funding for the first stage of the new national charity’s funding and awareness campaign.
Sandy added: “It was especially touching to have Diana’s eldest son Harry with us on the day, and I am sure Diana would be very proud of what we have all achieved in her memory.”
What a wonderful and moving thing for our Life President to say.
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