13 August 2025 News

A snapshot of our political work throughout the quarter, in addition to our Parliamentary work for Global MND Awareness Day - which you can read more about here. 

In Westminster

We have been busy working on the proposed changes to the benefits system as part of the Universal Credit and Personal Independence Payment Bill. 

Our initial response to the Green Paper highlighted our concerns regarding the changes to PIP eligibility and Universal Credit for younger people, as well as the lack of consultation with disabled people.  

In support, Chris Hinchliffe MP lodged a question on the impact of these changes on people with MND, while Ben Lake MP, and our APPG on MND Chair Ian Byrne MP, tabled questions on the effect of the proposals on people not included within the formal consultation process. 

Ben Lake MP and Christopher Hinchliff MP
Ben Lake MP (L) and Christopher Hinchliff MP (R) ©House of Commons/Roger Harris

We also signed an open letter to the Prime Minister and worked alongside the MS Society and Parkinson’s UK to develop a joint briefing for MPs on the impact of the changes on people with neurological conditions. 

Showing support for the Association’s Prescribe Life campaign for equal access to the tofersen Early Access Programme (EAP) for people with SOD1 MND, officers of the APPG wrote to Minister of State for Secondary Care, Karin Smyth MP, to request additional resources for delivery and issued a statement following the response. 

To supplement this, many of our supportive MPs tabled questions to the Minister to raise our concerns, including Jim Shannon MP, Tonia Antoniazzi MP, and Sarah Hall MP. The Minister’s response remains that the delivery of EAPs remains at the discretion of individual trusts. 

We are continuing the Association’s work on the campaign by encouraging MPs to engage ministers on this pressing issue. For Carer’s Week, we attended a Parliamentary drop-in hosted by Carer’s UK. 

Along with MND carers Helen and Kathryn, we met with over 25 MPs and representatives, including Minister of State for Care Stephen Kinnock, Liberal Democrat leader Sir Ed Davey and Chair of the Independent Commission into Adult Social Care, Baroness Casey, to talk about the challenges facing MND carers. 

In Northern Ireland

The long-awaited Regional Review of Neurology Services in Northern Ireland was published this month. After launching in 2018, it was tasked with identifying current and future needs, along with actions required to ensure these services are sustainable.  

We welcome the Review, which touches on many of the recommendations from our 2023 report on the provision of care for people living with MND in Northern Ireland. We have been busy attending consultation events with other organisations and Department for Health representatives.  

You can read our full response to the Review here, which saw us work alongside the Northern Ireland Branch to collect people with MND and their families' thoughts on what could be improved.

In Stormont, we joined Carer’s Week afternoon reception with Carer’s NI to discuss the issues facing MND carers in Northern Ireland. We managed to talk to the First Minister, Deputy First Minister, and Minister for Health about their work and our priorities for unpaid carers in Northern Ireland.  

In Wales

As part of their continued inquiry into fuel poverty in Wales, the Senedd’s Equality and Social Justice Committee released a report called ‘Turning up the heat before 2060’. In this, they highlighted some of our evidence around the narrow eligibility criteria for support and the need for a more targeted approach. 

The Welsh Conservatives previously announced a small reshuffle, appointing MND Ambassador in the Senedd, Peter Fox MS, as the new chair of the Health and Social Care Committee. Peter is a long-standing supporter of the MND Association, and we wish him all the best in his new position. 

Peter Fox MS at Senedd event to mark Global MND Awareness Day
Peter Fox MS at Senedd event to mark Global MND Awareness Day

We attended the Welsh Conservatives Conference in Llangollen. They set out their vision ahead of the Senedd elections in May to ‘Fix Wales’. Policy announcements included the declaration of a health emergency to focus efforts on driving down NHS waiting times, a public inquiry into Betsi Cadwaladr Health Board and the introduction of a Welsh Winter Fuel Allowance.   

For Carer’s Week, we joined lots of other organisations representing unpaid carers for a lunchtime reception hosted by Carer’s Wales. We heard from the Minister for Children and Social Care, Dawn Bowden MS, about the Welsh Government’s continued work on unpaid carers and from Plaid Cymru’s Spokesperson for Health and Social Care, Mabon ap Gwynfor MS, about their vision for unpaid carers in Wales.