Please allow me to assure you that research, ensuring early diagnosis, and providing support are the Government’s key priorities for helping those living with motor neurone disease (MND).
In November 2021, the Government committed at least £50 million over a five-year period to MND research. I understand that £29.5 million of this committed funding has been allocated to specialist research centres so that researchers can access the funding as quickly as possible. The £29.5 million package includes £8 million for early phase clinical research for MND to speed up innovative new treatments, as well as £1 million for a MND Collaborative Partnership to support the discovery of MND treatments. Remaining funding will be available for researchers to access through the MRC and NIHR.
My colleague, the Health Secretary, Steve Barclay, has recently hosted a roundtable for patient groups and leading researchers to discuss their research on MND and explain how this funded can be accessed. As a result, everyone in England can now sign up to take part in MND and wider health research through the NHS App.
The increase in research funding will accelerate progress across the UK to find better treatments for MND, giving people living with the condition the chance of a better quality of life.
The support and care that unpaid carers provide to loved ones living with MND is invaluable, and I fully sympathise with the strain that many are facing.
The MND Association has provided important insight into the extent of support that carers provide, and I am concerned that only 25 per cent of carers have received a carers’ assessment or were in the process of receiving one.
In England, responsibility for carers assessments lies with upper-tier local authorities.
I am grateful to the MND Association for their work to highlight the importance of access to aids and adaptations in the home to people affected by Motor Neurone Disease.
As part of the Social Care White Paper, the Government committed £570 million to delivering the Disabled Facilities Grant from 2022-23 to 2024-25, and has pledged to consult on proposals to increase the upper limit for the Grant.
Finally, I will try my best to attend the MND Association’s Parliamentary drop-in on Wednesday 21 June 2023, Parliamentary business permitting.