10 April 2025 Association News

APPG on MND visit Kings College London
APPG on MND visit King's College London

In Westminster

We have secured a place on the recently launched Commission on Palliative and End of Life Care, which will identify the strengths and weaknesses in the area and generate a report for the Secretary of State for Health and Social Care and Members of the Commons and the Lords. Professor Chris McDermott, co-director of the UK MND Research Institute, is part of the commission and will represent all things MND during the work.  

The MND Association took part in a Parliamentary drop-in alongside the Carer’s Poverty Coalition and Rick, who is living with MND, and his wife Penny, his carer. We also attended the Parliamentary Neuro Reception alongside the Neurological Alliance, discussing the newly announced UK Neuro Forum.  

The Association was invited to give evidence to the Independent Review into Carer’s Allowance Overpayments, to discuss the impact this issue has had on the MND Community. We hope this will be the start of a broader programme of work into the Carer’s Allowance system and will engage with the work as it continues.   

Several Parliamentary Questions on MND have been raised in recent months, including Frank McNally MP raising the need for Government funding for MND research, with Feryal Clark MP responding. Kit Malthouse MP also highlighted issues around access to clinical trials. 

The All-Party Parliamentary Group on MND 

We launched a survey to understand the priorities of the MND community and help shape the APPG workplan. Over 300 people living with and affected by MND responded and research, support for carers, and financial support emerged as the main themes of interest 

Furthermore, members of the group participated in a site visit to the research labs at King’s College London (KCL). They were given a tour of the facilities and heard about lots of the incredible work going on. The MPs were very engaged with the cutting-edge research and some of the concerns around sustainable funding for the work. 

MPs attend the King's College London visit about MND research
MPs attend the King's College London visit about MND research

Members also sat down in Westminster to discuss MND research, with the meeting focusing on the clinical trials process. It saw contributions from Dr Nick Cole and Dr Mike Rogers from the Association, Dr Jane Haley from MND Scotland and Professor Ammar Al-Chalabi from the UK MND Research Institute as well as members of the MND community.  

Much of the meeting focused on the Tofersen Early Access Programme and issues some face in receiving the drug. The APPG Officers have since written to the Minister of State for Health to outline the issues and request joint working with NHS England to resolve the impasse. The MND Association's CEO, Tanya Curry, also wrote to the Government to raise this and urged ministers to work with counterparts at NHS England to urgently find a solution. 

In Wales

During recent debates on the Welsh Government Budget, our MND Ambassador in the Senedd, Peter Fox MS, raised concerns about funding for housing for adaptions for people with MND in the region. The Welsh Government passed their final budget for 2025-26, which included an extra £30 million for social care to target delayed hospital discharges and provide more care and support in local communities.  

It has also been announced the Short Breaks Scheme and Carers Support Fund, which provides emergency financial aid for unpaid carers, will receive £3.5 million and £1.75 million respectively for 2025 to 2026 from the Welsh Government.    

They also announced a reallocation of £2.2 million in additional funding to the Disabled Facilities Grant to provide housing adaptations for older and disabled people in Wales. The Association has been campaigning on this for some time and welcomes the additional support.   

The Senedd Equality and Social Justice Committee released a report on the Disability Employment Gap in Wales, outlining some of our evidence on how to support people living with MND and MND carers in the workplace.  

 

We attended the Plaid Cymru Spring Conference and had lots of productive conversations with supportive politicians. In preparation for the Senedd elections, the Party made several policy announcements, including a re-commitment to a National Care Service for Wales. 

In Northern Ireland

We met with nine Members of the Legislative Assembly (MLAs) to discuss the Committee for Health’s Inquiry into accessing Palliative Care Services in Northern Ireland. 

We co-signed a statement alongside other leading charities calling for an urgent review of the Department of Health’s Core Grant Funding process. The scheme, which funds programmes supporting a diverse range of carers in Northern Ireland, has been reinstated at a reduced level. The Health Minister has now agreed to meet the Coalition.   

The Northern Ireland Assembly also debated State Pension Access for terminally ill people, with Maurice Bradley, MLA, highlighting the increased energy costs associated with living with MND and arguing for extending state pension to terminally ill people of working age to prevent them from living in poverty.