Following last week’s drop in event at the Welsh Parliament, which aimed to raise brain tumour awareness and the need for more research amongst Members of the Senedd (MS), we said:
“This was a successful, well attended event at which many MSs shared their own personal brain tumour stories, and we are encouraged to start planning for further engagement.”
We didn’t have to wait long for this as Peter Fox MS (pictured with me) will be leading a short Senedd debate on brain tumours on Wednesday 17th May. This is a great opportunity so can we directly appeal to all campaigners in Wales to please contact your MS this weekend and ask the following:
SUBJECT: Brain Tumour Debate Wednesday 17th May
Dear …
There will be a short debate on brain tumours in the Senedd on Wednesday 17th May.
As a campaigner for Brain Tumour Research and someone with a personal reason to want an improvement in the options and outcomes for brain tumour patients and their families, can I urge you to support our cause and attend this debate on the 17th May.
For background information please contact Hugh at Brain Tumour Research (hugh@braintumourresearch.org) who is in Cc.
Kind regards,
…
The pledge card Peter is holding in the photo says ‘Signatures Can Save Lives’ so please sign our petition and help us reach 100,000 signatures.
We are calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028. Sign the #braintumourpetition
At the recent Holyrood brain tumour debate Paul Sweeney MSP (pictured), Shadow Minister for Mental Health, emphasised that despite the prevalence and devastating impact of brain tumours, just 1% of the national investment in cancer research has been allocated to the disease. He highlighted the work Brain Tumour Research is doing to increase that investment to £35million per year and commended the charity on “building capacity in pioneering research” through its Centre of Excellence strategy.
Mr. Sweeney has now tabled the following questions and we await the answers;
- To ask the Scottish Government what plans it has to establish a Centre of Excellence for brain tumour research in Scotland, in line with the existing network of four such centres in England.
- To ask the Scottish Government whether it will consider the redevelopment of the Institute of Neurological Sciences in Glasgow as an opportunity to establish a Centre of Excellence for brain tumour research in Scotland.
On the day we launched the APPGBT report ‘Pathway to a Cure’ at Westminster I saw Sarah Olney MP being interviewed on College Green by a TV crew, so I wandered over and gave her a copy of the report. I can’t be sure if she read the report, but I would have certainly planted our cause in her mind, so we were interested to see that she has asked, and had answered the following questions this month:
Sarah Olney MP
To ask the Secretary of State for Health and Social Care if he will take steps with NHS England to revise the list of non-specific symptoms (NSS) that warrant referral to the NSS pathway to include more symptoms which may indicate a brain tumour.
Helen Whately MP – responding as a Health Minister
Non-Specific Symptom (NSS) pathways are intended to cover the cohort of patients who do not fit clearly into a single ‘urgent cancer’ referral pathway, but who are nonetheless at risk of cancer. If a patient has specific alarm symptoms warranting referral onto a single site-specific pathway then these patients are better suited for a tumour-specific urgent suspected cancer pathway. In November 2022, NHS England launched the first phase of general practitioner (GP) direct access guidance to expand the availability of specific tests to GPs for people with concerning symptoms that do not meet the threshold for an urgent suspected cancer referral. Direct access diagnostics, NSS pathways and existing site-specific routes sit alongside and complement each other to ensure GPs are able to act swiftly to investigate the wide range of symptoms which can indicate cancer.
Sarah Olney MP
To ask the Secretary of State for Health and Social Care, if he will make it his Department's policy to ensure that all general practice clinicians can access readily available training on the signs and symptoms of a brain tumour.
Neil O'Brien MP – responding as a Health Minister
NHS England is delivering a range of interventions to support general practitioners in diagnosing brain cancer earlier. In April 2020 they introduced the ‘early cancer diagnosis service specification’ for Primary Care Networks (PCNs). This is designed to support improvements in rates of early cancer diagnosis by requiring PCNs to review the quality of their practices’ referrals for suspected cancer and take steps to improve them.
NHS England is making funding available to embed clinical decision support tools within general practice and give access to a wider range of diagnostic tests. These tools and tests are expected to support the earlier detection of a range of cancers including brain cancer. A brain cancer education module is freely available on ‘Gateway C’, which offers online and face-to-face training on cancer symptoms for primary care clinicians.
I am very much looking forward to joining worldwide brain tumour activists and patient advocates at the IBTA Brain Tumour Summit taking place in Vienna toward the end of June. This will be the fifth such event with the first being in California in 2014. I have been privileged to attend all of them and have been able to share some of our campaigning endeavours and successes with other attendees.
The attendees at these summits range from big US organisations like the US based National Brain Tumor Society who are currently at the height of their campaigning with their 'Head to the Hill — our signature advocacy event held every May'.
May is their awareness Month and it is interesting to see the statistics they use to raise awareness.
Australia is also a large presence at these summits ( Brain Tumour Alliance, Cure Brain Cancer Foundation plus several others) and are notable campaigners too plus Australia would appear to have a system that is designed for a quicker movement of new therapeutics from bench to bedside. This is going to be a key campaigning theme for Brain Tumour Research this summer. We are receiving too many letters where access to drugs in the UK is being held up by regulatory authorities. This can lead to agonising decisions being taken to access treatments overseas in countries where this therapeutic hope has been passed into clinical trials in a process more appropriate to the urgency needed.
One of the wonderful things about the IBTA summit is the perspective it brings though and alongside the bigger charities are smaller organisations, sometimes just one or two committed people such as at the Zimbabwe Brain Tumor Association and I was delighted to see the APPGBT report posted by them on their Facebook page. I won’t forget their 2014 presentation to the summit. Christine from the association told us that there are (or there were then) just four registered neurosurgeons in Zimbabwe. The population of Zimbabwe is 14 million. That is one neurosurgeon for every 3.5 million Zimbabweans. According to the NHS in May 2021 there were 362 consultant neurosurgeons working in the NHS in England where the population is 56 million, a neurosurgeon for every 156,000 of us.
Whilst we push and lobby for greater access to trials and new treatments on the NHS and an end to the need for patients to travel overseas when the NHS has no further treatment options for them it is also a sobering balance to consider the surgical opportunities if you are diagnosed with a brain tumour and live in Zimbabwe rather than the UK.
On the 21st of April I wrote about our campaigner in chief stepping down.
Here is the advertisement and job specification as we search for her replacement.
The singer Tom Parker joined an APPG meeting in December 2020 and he was joined at the meeting by his friend, mentor, support and ‘brain tumour brother’ Dave Bolton. In 2021 Dave set up Ahead Of The Game Foundation a non- profit foundation which aims to bridge the gap in the NHS by providing free rehabilitation to those diagnosed with all types of cancer. They aim to make a positive impact on people's lives when it is needed most, by giving back to those who are less fortunate struggling in deprived areas.
It has been my pleasure to be in Dave’s company a number of times – he is a great and remarkable guy and I wanted to share his unique thoughts on his Cancerversary.
This photograph of Dave is ©saraporterphotography
“Happy 9 year Cancerversary to me!
Nine years ago, my life took a drastic turn when I suffered a 15-minute nocturnal grand Mal seizure. It was the last day of my job as a detective sergeant in charge of a covert unit within Knowsley tackling serious and organised crime.
Little did I know that this event would change the course of my entire life.
Since then, I have undergone two major life-saving brain operations, chemotherapy, and radiotherapy. I have had to fight through extreme nausea and sickness, more seizures, and even a diagnosis of skin cancer in my chest.
But through all of this, I have learned that sometimes the path we thought we were destined to walk is torched and destroyed beneath our feet. And in that moment, we have a choice to make. We can either give up and quit or create a new path, one that we were always meant to walk.
I choose to thrive from my situation, not just survive. I have cultivated a mindset that allows me to no longer walk with fear and to overcome any situation that I am presented with.
Life is 10% the situation we find ourselves in and 90% what we choose to do about it. And even though I may have cancer, cancer does not have me.
I am grateful for every day, and I am determined to live my life to the fullest. Here's to many more years of thriving!
Thank you for everyone’s continued support whether you were at the start of my journey to defy the odds or recently.
It truly means a lot.
Always remember there is another a way another option but most of all there is HOPE!!”
I know some of you reading this today will find it hard to be hopeful at the moment and you are very much in our thoughts, but we will be here when you need us.
As a research funding and campaigning charity, we aren’t seen as a frontline service but what more frontline service could there be than to provide hope? Research provides hope – campaigning provides hope – as our campaigner, Peter Realf said: “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” (2018). 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.”
Wishing you all a peaceful time until next week’s update.
Hugh
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