In recent weeks, this blog has focused on why our community campaigns.
Your stories and your sense of injustice, your anguish and your passion.
This week we wanted to share about the brain tumour researchers who campaign alongside us.
For example, Professor Kathreena M Kurian, Professor of Neuropathology at Bristol Medical School. We spoke with Professor Kurian recently following the publication of her research paper about a gene, found in mutated forms in many different types of tumours called BRAF.
She told us:
“Campaigning brings public and political awareness – it is the very embodiment of patient power. The voices of patients and their families influence the funders and that benefits us the scientists and researchers. Politicians talk a good game, but we need to hold them to account. I have met with Health Ministers and addressed the APPGBT. We must have a bigger voice and get the political ear for a wider platform that can deliver systemic change. I honestly believe it will come.
"Covid was an emergency and look what we achieved with funding and innovative thought. Brain tumours are an emergency for our patients. Campaigning makes a difference. The allocation of the £40 million was the result of campaigning and I will always work alongside you all in trying to get this money allocated to the researchers.
"As I said in my blog on the Brain Tumour Research website a year ago Science is not about certainties, and that is what makes it such an exciting world, and one I am privileged to have spent my working life in. However, one certainty is that, when it comes to medical research, more money equals better patient outcomes.
"Our brain tumour patients do not have the luxury of time. We really need to do better.”
In the wake of our #braintumourpetition we launched a report in April this year calling on the Government to Level Up and stop the devastation.
Levelling up seems to be on everybody’s lips at Westminster at the moment as there is now a Department for Levelling Up, Housing and Communities with two ministers having levelling up responsibilites and a shadow minister in place as of this week.
Clearly, the levelling up agenda being described here isn’t our one but the use of terms that are currently being used in Westminster can only help our cause.
All of this aids our momentum and that is what we need.
Our case now goes beyond calls for parity of research funding – we want our disease area to be treated as a unique case as Covid has been and, as David Cameron believed, both dementia and the use of genomics to be before that.
It is a bit early to look forward to next year in this blog but the uniqueness of brain tumours and the APPGBT inquiry,’ Pathway to a Cure,’ will both be at the core of what we do in 2022.
Speaking of the APPGBT, next week I will be able to share the Parliamentary briefing we are currently putting the final touches to and update you all on what happened at next Tuesday’s meeting.
Thank you again for your support in getting your MPs along to support us.
It is important that you communicate with us so that these blogs, and our campaigning agenda, reflects what is on your mind. We were in conversation with one of our most active campaigners recently who felt it would be valuable to share with our community about these resources:
This is what the NHS says about Patient Safety Incident Investigation on its website
Every day more than a million people are treated safely and successfully in the NHS.
When patient safety incidents do happen, the effects can be devastating. It is essential that everyone involved in the incident is properly supported and that a just, open and transparent approach is adopted.
It is also important that NHS organisations use information from incidents to establish what they can tell us about our healthcare systems.
Patient safety incident investigation (PSII) resources
PSIIs offer the opportunity for in-depth study in response to key patient safety incidents. Safety investigations are conducted to identify how and why certain patient safety incidents happen. They include data collection and analysis phases to learn more about system-based underlying factors and their interdependencies. Recommendations and improvement plans are then designed to: effectively and sustainably address those system factors and help deliver safer care for our patients.
PSIIs are conducted for systems improvement. They are not inquiries into the cause of death, nor to apportion blame or hold individuals or organisations to account. For those purposes, it is important that incidents are referred to other relevant independent organisations who are specialists in conducting those types of investigation.
Our investigations look at factors that have harmed or may harm NHS patients. We work closely with patients, families and healthcare staff affected by patient safety incidents, and we never attribute blame or liability.
It may be that this is useful information to some of you and if it is then we are fulfilling our role as the brain tumour patient voice.
If it is of interest to you then it is of interest to us.
We noted this Parliamentary Question (PQ) on November 24th
Stuart Anderson MP
To ask the Secretary of State for Health and Social Care, what steps he is taking to (a) promote awareness of different types of cancer and (b) encourage people to seek early help.
Maria Caulfield MP
In October 2020, NHS England and NHS Improvement and the former Public Health England launched the 'Help us help you' campaign to encourage people to come forward with symptoms that could be a sign of cancer and reassure them that the NHS is open.
NHS England and NHS Improvement are planning a new campaign in the first quarter of 2022 to address the barriers to people presenting with symptoms of cancer and are developing plans to raise awareness of key cancer symptoms in 2022/23.
This is all perfectly acceptable and noble but so much harder with a disease that, particularly in its most aggressive forms can initially present as an extraordinary, unexpected traumatic occurrence such as a seizure.
Greater understanding at a molecular level through early-stage research is what is needed because that may then help clinicians and scientists predict such events.
This is the understanding Professor Kurian seeks and seeks funding for.
That is why she campaigns, that is why we campaign, that is why you campaign.
We campaign together to make a difference for brain tumour patients and to find a cure for all types of brain tumour.