A smorgasbord

3 min read

Happy New Year and as befits the season for finishing off festive food leftovers it is a bit of a smorgasbord of a blog to begin 2022.

Firstly, it is always a joy to welcome new campaigners to our database and those new to us in 2022 have swelled our number to more than 1,000. It is remarkable so many of you are taking positive action to support Brain Tumour Research’s campaigning agenda.

If you’d like to join this database and have this update emailed directly to you, please visit:  www.braintumourresearch.org/campaigning/campaign-with-us

Hold tight as it will be a busy year with the APPGBT inquiry at the forefront.

Many of you, email us asking what questions we would like you to request your MPs to raise at Westminster. These questions, and their answers, help us build up an accurate and contemporary picture of the state of play regarding research funding – not just for brain tumours, but for other areas of cancer research, as the comparative statistics help us to make our case for more funding.

So, for example one of our most loyal campaigners lobbied their MP Drew Henry to ask the Secretary of State for Health … “how much of the £20 million committed by his department in 2018 to brain tumour research over a five-year period is still to be allocated; and what assessment he has made of the effect of the covid-19 outbreak on brain tumour research funding.

Health Minister Maria Caulfield answered on 17th December:

“Since this funding was announced in February 2018, a further £20 million was announced in May 2018, bringing the total planned investment to £40 million over five years.

The information on spending still to be allocated is not held in the format requested. The National Institute for Health Research’s (NIHR) infrastructure spending on cancer research does not record the specific type of cancer. Studies can be applicable to cancer in general, such as the type of tumour and research on supportive and palliative care interventions.

During the COVID-19 pandemic many of the NIHR’s research programmes, studies and trials were necessarily paused. However, the NIHR’s funding competitions remained open throughout, including for brain tumour research.”

Ms Caulfield’s answer begs further questions and it's these questions which, among many others, the APPGBT inquiry will be addressing. If you would like to put forward a brain tumour research related question to your MP for them to ask at Westminster, please do email hugh@braintumourresearch.org and we will build a list of campaigners willing to take this proactive step.

As many of you will know our political action together has included the use of petitions, be it the Realf petition of 2016 or last year’s #braintumourpetition but there are other petitions we support and may be of interest to some of you reading this.

Firstly, there is one calling for the creation of a publicly owned manufacturer for off-patent, generic drugs in the UK. This would have implications for the availability and cost of repurposed drugs and as it has passed 10,000 signatories it has prompted a reply from Government which you can read by clicking on the hyperlink.

In these updates, we have previously signposted to the petition “End reviews of PIP and ESA awards for people with lifelong illnesses”: https://petition.parliament.uk/petitions/593296

It is likely that many of you have signed this so you will be interested to hear that the Work and Pensions Committee are running a survey to hear from people who have had Personal Independence Payment (PIP), or Work Capability Assessments as part of a claim for Employment and Support Allowance (ESA) or Universal Credit. They want to know what your experience was and how you think these assessments could be improved.

If you have had an assessment to claim PIP and/or a Work Capability Assessment to claim ESA or as part of a Universal Credit claim, you can tell the committee your views here: https://forms.office.com/r/WPHy8kB23e

The survey will be open until mid-February 2022.

The British Paediatric Neurology Association and James Lind Alliance have just launched their prioritisation survey to help define the Top 10 unanswered questions about the treatment of Childhood Neurological Conditions.  

From a list of 44 questions, they are asking you to choose the top 10 most important to you. 

The aim is to turn these priorities into funded research questions that have the potential to go on to improve the lives of children with these conditions. 

We are supportive of this survey and if you would like to complete it, or at least gain further information, here is the link: www.surveymonkey.co.uk/r/BPNA_JLA_Research_Priority_Setting_Survey2

On Tuesday, 11th January, the Less Survivable Cancers Taskforce (LSCT), which we are supportive of, is launching the first ever Less Survivable Cancers Awareness Day to raise the profile of the six less survivable cancers (brain, liver, lung, oesophageal, pancreatic and stomach) which are responsible for almost half of all cancer deaths and make up a quarter of cancer cases each year in the UK.

The aims of the day are to:

  1. Raise awareness of the less survivable cancers (LSCs) and their symptoms with the general public, and encourage people to see their GP if concerned
  2. Raise awareness of LSCs with healthcare professionals, policymakers and politicians across the four nations

Something that we read with interest over Christmas, and is reproduced here more for general interest than anything else, was 100 ways to slightly improve your life without really trying – although we would point you to number 95 and suggest you might like to bear Brain Tumour Research in mind (if you’d rather something more active to demonstrate your support then our 10,000 Steps challenge has just launched!)

So that is the smorgasbord of an update for the first week of 2022 and it shows that, as campaigners, we can focus on several different areas, but the aim remains the same and, if there were ever any doubt about how vital our campaigning is, then this Christmas that was vividly, poignantly, and heart-breaking demonstrated by these two Facebook posts.

RIP Owen Copland

RIP Freya Bevan

You both deserved so much more, our sincerest condolences to those who loved you.

We won’t forget you and we will work tirelessly in 2022 and beyond to make a difference for all brain tumour patients.

It is time for the devastation to stop.

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