This week our Chief Scientific Officer, Dr David Jenkinson, is speaking at a meeting of the All Party Parliamentary Group on brain tumours about what risks Brexit poses to research into brain tumours and what Members of Parliament can do to help
I'm pleased to be speaking directly to decision makers in Westminster this week to reiterate some of the concerns our researchers have as the UK negotiates to leave the EU. There are over 150 different types of brain tumour - it is not one disease.
Like all rare diseases collaboration across Europe in the field of brain tumours is fundamental. In childhood cancers, with niche knowledge and expertise and small patient populations, we wouldn't get much done if we relied solely upon the UK. The EU makes it easier and incentivises joint collaborative working.
The Brain Tumour Charity is the UK's largest dedicated funder of research into brain tumours. Of our total funding in 2016/17, 79% went to projects that involved global collaboration as opposed to collaboration solely between UK partners. In fact, nearly half of all UK cancer research involves international collaboration .
Collaboration with EU institutions is fundamental to our work and includes initiatives in Denmark, France, Germany, Holland and the Republic of Ireland.
Last week's budget announcement from the Government featured some small measure of reassurance for the life sciences sector. In particular, changes to immigration rules to enable scientists and researchers to apply for settlement after three years; make it easier for highly skilled students to apply to work in the UK after graduation and to relax labour market tests for UK research councils and other organisations to sponsor researchers.
A functional immigration system with positive benefits for the sector is a must have. But the pull factor must be greater. The UK must continue to be an attractive place to work, continuing to offer opportunities in line with those our current relationship to the EU affords, and offer a safe and welcoming environment for researchers and their families. And the policy details must be worked out quickly – several researchers have told us already of positions being turned down by non-UK nationals.
In September, the Government published its position paper on Collaboration on science and innovation: a future partnership paper which was broad in scope and offered few assurances . We now await not only more details but a Government commissioned impact report for the life sciences sector which speculates on what the impact of Brexit might be. The Government eventually promised to make it public under pressure from MPs, but has so far failed to do so.
There are two more areas I want to highlight briefly.
Firstly, access to EU grants must continue. Currently, applicants must be from an EU member state or the European Economic Area. Soon we will no longer be a member of the former and the latter is unlikely to satisfy many voters. Other countries outside of these two arrangements have some but limited access to grants. Whilst the research we fund is not in immediate danger, an inability for our UK based researchers to apply for EU grants could jeopardise the potential impact of our findings. Not only in terms of access to follow on money but the loss of collaborative opportunities that the grants actively promote.
Secondly, the 2011 EU Directive on Patients' Rights in cross-border healthcare established 24 European Reference Networks (ERN), including one for rare solid cancers of which there is a subgroup for brain tumours. Little heard of amongst our community they are still in their infancy. They are virtual networks that support collaboration, co-operation and the exchange of expertise and best practice among healthcare professionals in existing specialized centres across the EU and facilitate access to care for patients across the EU. The future of UK participation in ERNs is a concern. The UK Government has previously recognised the potential of ERNs to help deliver on commitments made in the UK Strategy for Rare Diseases and has stated that the UK is a key player in ERNs. However, ERN's are currently only open to EU Member States and EEA members.
The Charity's policy team will continue to monitor the Brexit negotiations, listen to our research community and contribute to the work of charity coalitions who are campaigning on these and other issues related to Brexit.
If you would like to know more, please email our Policy Team