Campaign for Targeted MND Research Funding
What is meant by targeted funding?
Targeted appears to have a quite obvious meaning in relation to MND research, doesn’t it? Yes, it is simply research that is dedicated to finding the causes and treatments for Motor Neurone Disease (MND). So just why is this phrase so important to the MND community currently?
When we set out to establish ‘precisely’ how much is spent on targeted research as part of our campaign, we were surprised by the results of our findings.
Lets take the ‘reported’ UK Government spend on targeted MND Research. If you ask this question of our government, and we have many times, along with many others including the major MND charities, you will tend to receive a repetitive, almost templated, response, such as this example from Secretary of State for BEIS, Kwasi Kwarteng, in September this year (2021)
….in the last fiscal year UK Research and Innovation spent £15.9 million on MND research…Kwasi Kwarteng – Hansard Sept 2021
However, when a forensic analysis is carried out, grant by grant, on the publicly available data for projects funded, this number soon reduces to only about:
£5m in 2019/20 and much lower in all of the last 5 years
Sadly, it appears that any project that simply mentions the disease (or even only the letters MND) is often included in government figures. Grant applicants will, understandably, often try to make their application as attractive as possible to grant boards. For example a Parkinson’s disease researcher might reference MND within his/her grant summary, to describe the wider benefits of his/her planned research. But, in the harsh light of day, the research can often be unrelated and have no impact at all on advancing the understanding of our disease. This can easily lead to an unwary government adviser/reviewer/librarian including projects entirely unrelated to finding causes and treatments for MND in their reports. The problem is further compounded when these formal responses to oral and written questions are then filed in the Parliament library and/or Hansard to be regurgitated in response to future questions, thus perpetuating the misleading information.
By far the greatest area of misunderstanding is the belief that funding for other neurodegenerative diseases is targeted at MND. This is simply not the case. MND researchers hardly get a look in for the large funds released to the major UK universities and research establishments. Within these government awards, the single biggest area contributing to the over statement of government funding is within the category of “Dementia”.
For example, take at look at these 3 projects. Not one of them has is relevant to MND but they are often referenced in communications.
You might find the following further information useful in bringing to light the fundamental issues facing our disease’s funding and the concept of targeting.
Sources of MND research funding from the UK Government
Funds for research are largely provided by two departments
UKRI (UK Research and Innovation) – funded by the Department for Business, Energy, and Industrial Strategy (BEIS)
NIHR (National Institute for Health Research) – funded by the Department for Health and Social Care (DHSC).
Funding from Charity
The 3 core charities dedicated to MND are the MND Association, MND Scotland and My Name‘5 Doddie Foundation who provide currently in excess of £5m annually.
Example UK government responses to questions regarding MND research absolute funding
Tom Brake MP – 2018 – In response to Jeremy Hunt’s statement indicating that £52m was spent in just one year – To ask the Secretary of State for Health and Social Care (Jeremy Hunt), pursuant to his Oral Answer of 20 March 2018, Official Report, column 156, on motor neurone disease, which projects received that £52 million investment; and which 24 clinical trials are being recruited to.
Interesting, and quite dramatic answer, with over a 90% reduction in claimed spend and yet still overstating with a reference to “MND and related conditions”
Jessica Morden MP – 2020 – To ask the Secretary of State for Business, Energy and Industrial Strategy, what steps his Department is taking to support research on motor neurone disease.
Note: the answer uses phrases such as ‘expenditure relevant to MND’ and ‘basic science investment’ research numbers in response to a ‘specific’ disease research funding question.
Jessica Morden MP – 2021 – To ask the Secretary of State for Business, Energy and Industrial Strategy, pursuant to the Answer of 11 January to Question 130668, if he will name the projects that received funding in 2019-20 from the (a) Medical Research Council and (b) National Institute for Health Research
Note: Answer reports 7 projects for MND, but 1 is not MND and in fact Multiple Sclerosis! Confirmed NO projects funded by NIHR in year. However, answer does show a more representative spend in a good year for the MRC, although it is important to note the fund would be spread over of 3 or 4 years rather than the single year spend stated.
Our aim is for increased laser focused funding. Ask yourself, and orhers, is £5m annually really enough for such a devastating disease?
Lets sharpen our aim!