MPs and Peers meet to discuss some of the challenges and opportunities facing the MND community
Today the All-Party Parliamentary Group (APPG) on MND hosted its second online meeting of the year. A range of topics were discussed by speakers, who were: Sally Light, CEO of the MND Association; Jill Douglas, CEO of My Name’5 Doddie Foundation; Alex Massey, Policy Manager at the MND Association; and Len Johnrose, who is living with MND, and his wife Nadine.
Sally Light discussed the significant impact the pandemic has had on the MND community. This includes a worrying drop in referrals to neurology services, which in turn delays access to health and care services. Additionally, the Association is projecting a 20 percent drop in its income in 2021 which will impact on the amount of funding available for MND research.
However, MND research is on the cusp of some very promising breakthroughs and Jill Douglas announced an exciting collaboration between My Name’5 Doddie Foundation, the MND Association, MND Scotland, clinicians and people with MND to try to secure a funding commitment from the Government. This would be used to harness unprecedented advances in MND research through the establishment of a virtual MND Research Institute. Keep your eyes peeled for more information on this very soon.
The main part of the meeting was a discussion on home adaptations and accessible housing. Alex Massey presented findings from the Association’s Act to Adapt report which highlights the need for a fairer and faster system of delivering housing adaptations to people with MND.
Former professional footballer Len Johnrose, who was diagnosed with MND in 2017, and his wife Nadine shared their story of the difficulty they’ve faced when arranging for adaptations to be made to their home to allow Len to live as safely and independently as he can. Nadine described a recent fall Len had suffered as a result of not having the adaptations he needs put in place.
We’d like to give a big thank you to all our brilliant supporters who asked their MP to attend the meeting. 892 of you took part in our e-action and the meeting was attended by 31 MPs and Peers.
The MND Association provides the secretariat to the APPG on MND.
Stay up-to-date with all the APPG on MND news by following its’ Twitter account.