Campaigners have expressed “anger” with the Government that “red tape” is making it too difficult to access promised funding for motor neurone disease (MND) research.
They are calling for “urgent action” to speed up access to the funds.
Last November, Boris Johnson committed to providing £50 million to help find new therapies – and eventually a cure – for MND, a condition in which the brain and nerves progressively degenerate.
Labour MP Judith Cummins, who chairs the all-party parliamentary Rugby League group (APPRLG), has written to Health Secretary Sajid Javid to raise concerns.
Former rugby league player Rob Burrow was diagnosed with MND in December 2019, and has since become a leading campaigner on the issue.
“This hard work of Rob and other campaigners led to the announcement of a £50 million investment, but there are now serious concerns regarding delays to this funding,” Ms Cummins told the Commons.
In her letter to the Health Secretary, she said the cross-party group of MPs “would like to take this opportunity to raise concern at the significant red tape and bureaucracy which is stopping people who have been diagnosed with Motor Neurone Disease from accessing the crucial Government funding that has been allocated to assist those suffering with this terrible disease”.
She added: “It is important that Rob’s hard work is not lost.”
“The decision to allocate the sum of £50 million to MND research has served to offer hope for those suffering with MND across the country but there are now serious concerns amongst those eligible for funding in relation to the Government’s reluctance to cut red tape and allow easier access to the funds,” Ms Cummins said.
The MP goes on the describe how “various neurologists” involved in MND research have written a joint letter to a Government minister to “express their concerns at the delays to funding access”, claiming they have “expressed frustration at having to spend three months filling out forms” for “small chunks of the funding”.
She added: “Rob Burrow has been vocal recently in expressing his own concerns in respect of how difficult it is for those suffering with MND to gain access to the government fund.
“Rightly and justifiably so, the issue of how difficult it is to access the government fund has drawn anger from the Rugby League community. These concerns are echoed by the APPRLG.”
A Department of Health and Social Care spokesperson said: “We have invested millions of pounds on research – which led to major advances in how the disease is understood – and remain committed to spending at least another £50 million to help find a cure.
“Research funding is available now and researchers can apply to the National Institute for Health and Care Research and UK Research and Innovation.
“We will support the motor neurone disease research community in making these applications and fully understand how important it is for funding to be allocated as soon as possible so even more progress can be made.”
