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

Reshuffles, full in-boxes and inspirational people

Reshuffles, full in-boxes and inspirational people
by Hugh Adams

The recently announced reshuffle in Boris Johnson’s Government sees Lord Bethell leaving his post to be replaced by Lord Syed Kamall as Parliamentary Under-Secretary of State for Innovation at the Department of Health and Social Care.

During his tenure, Lord Bethell was made very aware of brain tumour research and the need for greater funding. He answered questions in the House of Lords on two occasions, gave oral evidence to the Petitions Committee, answered numerous written questions posed by Parliamentarians (many of whom had been lobbied to ask these questions by Brain Tumour Research campaigners), and convened a meeting of key stakeholders, which our Chief Executive Sue Farrington Smith MBE attended.

We look forward to similar levels of engagement with Lord Kamall.

At the Department for Business, Energy and Industrial Strategy (BEIS), the key appointment of Under Secretary of State and Minister for Science, Research and Innovation has been handed to George Freeman MP.

In 2016, Brain Tumour Research supported a Petitions Committee Inquiry and subsequent report which called on the Government to take decisive action to tackle the historic underfunding of brain tumour research. As Parliamentary Under Secretary of State for Life Science at the time, Mr Freeman responded on behalf of the Government at the resultant debate on brain tumours held on 18th April 2016. At the end of a highly charged session, it was Mr Freeman who announced the formation of the Task and Finish group to examine the issues raised during the Inquiry.

Mr Freeman has also visited the Brain Tumour Research Centre of Excellence at Queen Mary University of London (QMUL) and been supportive of Wear A Hat Day on social media.

We are very encouraged to see him taking up this new role and he will be key as we explore funding opportunities for the vital early-stage science that begins the translational pipeline from the scientist’s bench to the patient’s bedside.

We wish good luck to both new appointees, and to Lord Bethell as he heads toward his new challenge – we will make sure brain tumour research is always near the top of their inboxes.

For the new, and existing Health Ministers their in-boxes certainly will be full this week.

Firstly a story in the  Health Service Journal (HSJ)  reports on a national survey of NHS staff that has shown a drop in those who believe their employer is supporting their health and wellbeing.

Launched in 2020, the People Pulse is a monthly survey distributed nationally and is a key tool in monitoring NHS workforce health and wellbeing. The leak from a national survey of NHS staff shows that between May and August 2021, there has been a drop of 9.6% in perceptions of wellbeing and support, with positivity at a low of 57.3%.

£15 million was invested at the end of 2020, which aimed to increase staff mental health support and provide rapid access to mental health support services. The virtuous circle between staff wellbeing and meeting patient need would appear to be under threat and this is of concern to all patients currently undergoing cancer treatment.

Also this week Cancer Research UK have reported that the NHS in England has missed its target to diagnose and treat 85% of cancer patients within two months of their urgent suspected cancer referral for almost six years running. By not reaching this target, this means that almost 55,000 cancer patients should have been diagnosed quicker or started their treatment sooner.

The trends aren’t reassuring as the target of 85% has not been met since 2015, and the situation has been deteriorating year-on-year since 2017. 

Professor Charles Swanton, Cancer Research UK’s chief clinician, said: “Being referred urgently because you might have cancer, receiving a diagnosis and beginning treatment for the disease are hugely anxious times for patients, which are further compounded when there are delays. 

“For people with cancer, every day counts; that is why we have cancer targets. I've been working in the NHS for a long time and it’s hard to watch the continuous deterioration, and the anxiety and worsening outcomes this can cause patients. The Government has to commit to long term investment in workforce and kit so that we can turn things around and give patients both the care and outcomes they deserve.” 

Yes, we support these calls for investment in workforce and kit, why wouldn’t we? 

The need for research remains too, and it must not be missed by the Government or Cancer Research UK.

As well as funding for palliative care, psychosocial support and other vital areas there must be funding for the pathway from the scientist’s bench to the patient’s bedside. One must not be funded to the detriment of another.

As a charity and a community, we have called for parity of research funding in money allocated to site specific cancers.

We must make sure we are funding holistically on the cancer pathway because not to do so risks an emphasis on pastoral care not curative development.

CRUK project the number of people diagnosed with cancer in the UK to reach over half a million per year by 2035, up from around 367,000 in 2015 so not to invest in the science that underpins clinical innovation now, risks accusations of short termism.

Invest in the cure not just the consequence.

One other thing about Government cancer strategy has been an emphasis on public education and personal responsibility with awareness campaigns highlighting what people can do to lessen risks of being diagnosed with certain types of cancer – stopping smoking to lessen the risk of a lung cancer diagnosis being the most obvious one.

This strategy has no relevance to brain tumours because they are indiscriminate, we don’t understand the disease well enough to know what causes it. For this reason, it is disproportionally affecting children.

September is Childhood Cancer Awareness Month and we are taking the opportunity to raise awareness of brain tumours, the biggest cancer killer of children.

  • One in three children who die of cancer are killed by a brain tumour
  • Brain tumours kill more children than leukaemia
  • Diffuse intrinsic pontine glioma (DIPG) is the deadliest form of childhood cancer with a median overall survival of between eight and 12 months

Brain Tumour Research exists following the loss of a child.

In too many ways little has improved since the death of our Chief Executive’s niece Alison Phelan in 2001, three weeks before her eighth birthday.

Our vision is, was and will always be to find a cure for all types of brain tumours.

Another piece of public information now as the NHS has launched a national COVID Cancer Antibody Survey to assess antibody responses to the COVID-19 vaccines among cancer patients and is calling on cancer patients to sign up now - www.covidcancersurvey.uk/

Vaccination is an important strategy to protect society from the effects of COVID-19, but there is emerging evidence that a small number of cancer patients may have lower levels of antibody response than the general population. We don’t yet fully understand what lower levels of antibodies mean in terms of outcomes, but it may mean some people with cancer are not as protected from COVID-19.

The COVID Cancer Antibody Survey is one of the first surveys of its kind that will help us understand what protection people with cancer develop following COVID-19 infection and/or vaccination.

It will also help us understand whether and how antibody response differs between different cancer types and whether any particular treatments affect response to vaccination.

The survey is open to people aged 18 or over living in England who have either been diagnosed with cancer in the last year or are currently receiving cancer treatment. Participants will be sent a finger-prick blood test that looks for antibodies against COVID-19 in the blood. It will be sent in the post and comes with everything needed to complete and return the test.

By signing up for this survey, you can help to develop our understanding of what antibody levels mean for people with cancer and help us to provide the best treatment, care and support for patients, as well as finding out about your own antibody levels. 

You’ll fill in a short form with your details before being automatically redirected through to the NHS Test & Trace antibody test booking page where you’ll be able to book your free test. There are 10,000 places on this survey and the NHS expects to be recruiting participants for the next two to three months.

For more information, please use the ‘contact us’ section of the survey website: www.covidcancersurvey.uk/contact/

Tom Parker joined his former bandmates from The Wanted at a highly charged concert on Monday night.

London’s Royal Albert Hall was packed to the rafters with loyal and passionate fans of the band as Tom returned to the stage a year after his brain tumour diagnosis.

Brain Tumour Research was proud to be there, joined by our campaigners, Amani Liaquat, who, alongside her family, has done so much to raise awareness following her glioblastoma multiforme (GBM) diagnosis, and Maria Realf, whose petition in memory of her brother Stephen changed the course of brain tumour research campaigning at Westminster.

Also attending was Dave Bolton, a long time GBM survivor who has been working with Tom for months. Alongside fellow brain tumour patient and former professional footballer Dominic Matteo, Dave has just launched Ahead of the Game which will be working closely with Brain Tumour Research.

It was a huge privilege to be invited to attend this event and to represent Brain Tumour Research.

Well done Tom. As you said on the night: ‘it has been a tough year’, but the tributes paid will still be ringing in your ears and for many present at the Royal Albert Hall, your courage in the face of adversity is truly inspirational.

Finally, to end this week my colleague Emily in our PR team has been working with Phoebe Frances Brown to share her story.

Phoebe is an actor.

“You don’t have to do much to be an actor; just to be able speak and remember lines. Two very basic things” she says.

In November 2018 Phoebe was diagnosed with an incurable tumour in the area of her brain that controls speech, language and memory.

Her story is here and you can find out more about how you can see her tell her story on demand here

Tom Parker and Phoebe Frances Brown – two inspirational people, raising awareness, campaigning and shining through this week.

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