30th March 2016

Funding for mesothelioma research has always been pitifully low and for years now the Forum has campaigned hard for better funding. Our groups have raised hundreds of thousands of pounds for research through sponsorship of our Action Mesothelioma Day events and other fundraising activities.

So we are delighted that £5 million has been pledged by the Chancellor with the express aim of establishing a National Mesothelioma Centre to give a lead on developing research to find better treatment and a cure for this dreadful disease. This is a significant sum, at least compared to funding previously given for mesothelioma research.

Although this is a one-off grant it can be a springboard for the future if used wisely. We desperately need a national strategy for research which enhances collaboration amongst the leading researchers and builds on the cutting edge work already going on in the UK. We also need ongoing, sustainable funding earmarked specifically for mesothelioma research so that we can continue to develop new ideas and treatments, and also attract more researchers to the field, who may currently see this area of work as too risky given past funding difficulties.

At the moment it is unclear where and how this money will be allocated and that is a major concern. None of the leading mesothelioma researchers, research institutions or charities were consulted before the Budget announcement and were as surprised as anyone to hear the news.

During discussions at the annual All Party Parliamentary Group (APPG) Asbestos Seminar in the House of Commons on 22 March it was suggested that a decision had already been made by the relevant Minister to award this money to a consortium of institutions led by Imperial College, all based in London. If true, this is a shocking disregard for the existing experience and talent of mesothelioma researchers in the UK. Imperial College may have many fine qualities but they have published little, if any mesothelioma research.

There is no need to reinvent the wheel, we have some of the best research in the world already going on under our noses. A National Mesothelioma Centre does not have to be a ‘bricks and mortar’ centre. Why not a ‘virtual centre’, co-ordinating the research already happening in places like Leicester, Cambridge, Sheffield and Southampton?

The Forum has written to George Freeman MP, the responsible Minister, to urge full consultation and an open tender process before any decisions are made about the allocation of the £5 million, or the National Mesothelioma Centre. We need decisions that are made in the best interests of mesothelioma patients, and that requires open consultation with all the best people, not secret backroom deals.

We have an opportunity to drive the fight against mesothelioma forward and give victims some hope for the first time. That requires collaboration and openness not private negotiations. We should seize this opportunity with both hands, get all those currently leading on mesothelioma research around the table with politicians and civil servants and decide collectively the best way to spend the £5 million Budget award, what type of National Mesothelioma Centre we need and how we sustain progress in research for the future.