Follow up letters and virtual meetings

3 min read

The Petitions Committee have followed up their Oral Evidence session of 27th May with two letters – one to Health Minister, Lord Bethell and the other to Professor Dame Ottoline Leyser, Chief Executive UK Research and Innovation (UKRI).

You can read both letters by clicking here and here

I strongly urge you all, as brain tumour activists, to do so – I hope it will give you a sense of pride and achievement – we have come a long way.

Signed by the Chair of the Petitions Committee Catherine McKinnell MP the letters are the very epitome of holding the Government to account.

To give a brief flavour of the contents Catherine McKinnell tells Lord Bethell that “the Petitions Committee is extremely proud of its history of work on brain tumour research in the UK …and we remain deeply moved and inspired by the courage and determination of the campaigners and petitioners on whose behalf we have the privilege of continuing to undertake this work.”

The letter to Lord Bethell acknowledges “there remains much more to be done in many areas – in particular, when it comes to promoting basic research into brain tumours, and research into childhood brain tumours with the worst survival outcomes.” 

It then asks questions of the health minister such as:

  • What consideration have you given to amending or redirecting the £40 million funding commitment announced in 2018, which focuses on clinical and translational research funded via NIHR, to also include spending from the UKRI and MRC on basic research into brain tumours?
  • What plans does the Government have to improve access to clinical trials in the UK for families affected by brain and childhood cancers?
  • Will the Government reconsider its position and develop a bespoke research strategy for childhood cancers with the worst survival rates, including DIPG, and allocate targeted research funding aimed at improving outcomes for these patients?

Over the course of the letter Lord Bethell is asked to input, by 8th July, on;

1. Basic research

2. International research collaboration:

3. Medical research charity funding:

4. Childhood brain tumours:

5. Future commitments:

The letter to Professor Dame Ottoline Leyser seeks to understand current funding or support provided by UKRI and the Medical Research Council (MRC) for basic research relevant to brain tumours, or to help develop the research environment for brain tumour research and she too has a deadline of 8th July for her reply to allow the Committee to consider her reply before the summer Parliamentary recess.

When we first started working with the Realf family on the e-petition in memory of Stephen I don’t think any of us imagined us to be reading something like this letter to a health minister from the Petitions Committee six years later. It really is great to read Catherine McKinnell say toward the end of her letter to Lord Bethell – “We therefore intend to continue to monitor developments in this area, and to revisit our work on this topic again before the end of the five-year period covered by the Government’s initial commitments following the death of Baroness Jowell in 2018. We look forward to continuing to engage with you on this topic, and we would request that the Department ensures it keeps the Committee up to date with the Government’s plans and priorities on this vitally important, yet historically underfunded, area of research.”

This is heartening stuff - really positive, and it comes at the end of another busy campaigning week for Brain Tumour Research.

Late last week we had a very informative meeting with a former Shadow Chief Secretary to the Treasury which gave us plenty of food for thought about how to frame financial asks of the Government. We also met with Derek Thomas and the National Cancer Research Institute (NCRI) to think about how extra money could be best accessed by researchers. We have also set up another meeting with an MP who contacted us wishing to engage with our cause.

Our friend Seema Malhotra has tabled the three parliamentary questions below – these were due to be answered last week but currently remain unanswered;

1)To ask the Secretary of State for Health and Social Care, how many brain tumour research applications are under consideration by the National Institute for Health Research at the most recent date for which that information is available.

2)To ask the Secretary of State for Health and Social Care, what discussions he has had with representatives of the National Institute for Health Research (NIHR) on including brain tumour (a) experts and (b) patient advocates on the NIHR panel that considers brain tumour research proposals.

3)To ask the Secretary of State for Health and Social Care, whether the National Institute for Health Research provides feedback to applicants when it rejects a brain tumour research grant application.

Last week we mentioned the question tabled by John McDonnell MP who asked the Secretary of State for Health and Social Care, “with reference to the oral contribution of the Prime Minister of 12th May 2021, Official Report, column 158, what steps he is taking to increase brain tumour research?”

Edward Argar for the Department of Health and Social Care provided the following answer;

“In May 2018 the Government announced £40 million over five years for brain tumour research as part of the Tessa Jowell Brain Cancer Mission through the National Institute for Health Research (NIHR). Brain tumours are a difficult research area with a relatively small community therefore we are taking action to grow the field, through workshops for researchers and training for clinicians.

The NIHR released a public announcement to the research community in April 2018 for brain tumour research funding applications. We are relying on researchers to submit high-quality research proposals. All applications that were fundable in open competition have been funded.

That answer is disappointing, not least because the workshops have still not happened and we are putting pressure on to make that happen. Nor does it move the game on, but we are confident that with the momentum we have, and the advocacy of the Petitions Committee and other Parliamentarians, the game is about to be significantly moved forward. Replies such as these will become historic and with no relevance to the new situation regarding progress towards the Government delivering better funding for brain tumour research.

We have also had a very positive meeting with the Chief Scientist Office in Scotland this week. There are pockets of research excellence in Scotland and if there are opportunities to work alongside the NHS in Scotland to support early-stage research into brain tumours then of course we would explore them with enthusiasm.

The COVID-19 pandemic and Brexit are among the factors which have seen a drop in the amount of money charities are spending on medical research.

The decline has been revealed in a report released this week by the Association of Medical Research Charities (AMRC), which Brain Tumour Research is proud to be a member of.

CEO of the association, Hilary Reynolds CBE, said: "The financial year of 2019/20 was a challenging one, with the UK officially leaving the EU and the COVID-19 pandemic sweeping across the globe. Unsurprisingly, the research spend of fundraising charities dropped, moving towards its first substantial dip in over a decade.”

AMRC charities’ UK research expenditure fell to £1.7 billion in 2019/20. The financial year for most charities ended in March 2020 so this figure only captures the first couple of weeks of the pandemic. The AMRC collected data throughout 2020/21 and this shows the true scale of the impact: a £292 million drop in income, and a £270 million decrease in research funding.

Hilary added: "Our charities have done everything they can to protect the research they fund; digging into precious reserves, adapting fundraising methods, merging with one another, making redundancies, and cutting non-research activities. We’re proud of how hard they’ve fought to honour existing commitments to researchers and research but many have had to sacrifice future commitments. This will delay access to life-changing treatments and slow medical advances that are crucial to saving and improving lives. AMRC will continue to work with Government and stakeholders to secure sustainable support that gets our charities back on track and grows the UK’s capacity to save and improve lives through research."

Brain Tumour Research will continue to stand alongside the AMRC at this turbulent time – medical research is far too important for us not to do so.

We remain grateful to our supporters who have stood by us over the last year in order to help keep research going at our Centres of Excellence.

We are a research funding and campaigning charity and it is our fundraisers and campaigners that have done us proud over this difficult period and meant we have not only survived but have grown and can look to the future with a sense of optimism. It will be a challenge of course but together we can make the difference.

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