When Parliament was prorogued on 24 May and then dissolved on Thursday 30 May, all APPGs, including the APPG on MND, were also dissolved. This means the APPG on MND technically no longer exists until the Group is officially re-formed by MPs and Peers at the inaugural meeting.
The MND Association are proud to provide the secretariat for the APPG on MND and are currently working with MPs and Peers to get the Group re-formed.
Some of the following information remains on this page for archival purposes only and will be updated when the APPG on MND is re-formed.
The All-Party Parliamentary Group (APPG) on MND is a cross-party group of MPs and Peers with an interest in MND. The purpose of the group is to increase awareness and understanding of MND amongst parliamentarians and to campaign for better access to high quality services for people affected by MND.
The group was established in 2002 and meets regularly in Parliament. Usually someone living with MND will speak at each meeting.
The most recent officers of the group were:
Chair - Andrew Lewer MBE MP (Conservative, Northampton South)
Ian Byrne MP
Brendan Clarke-Smith MP
Mary Robinson MP
The MND Association provides the secretariat to the Group. For further information please contact [email protected] or call 029 2240 4709.
There is currently no Chair or Officers of the APPG on MND while we wait for the Group to be re-formed.
This is not an official website of Parliament. It has not been approved by either House. APPGs are informal groups of Parliamentarians with a common interest in particular issues. The views expressed are those of the group.
Minutes from meetings
13 March 2024
15 November 2023
29 March 2023
29 November 2022
23 February 2022
1 December 2021
18 November 2020
12 February 2020
9 July 2019
APPG reports
Inquiry into Personal Independence Payment
The APPG on MND launched an inquiry into access to Personal Independence Payment (PIP)* for people with MND in 2017.
The APPG released their report 'PIP and MND: Is the benefits system failing people with motor neurone disease?'
*Personal Independence Payment (PIP) is a benefit for people aged under 65 to help pay for the extra costs of living with a disability or health condition.
Inquiry into access to communications equipment
The APPG on MND's report, Condemned to Silence, showed the findings of their inquiry into access to communication equipment for people living with MND. The inquiry attracted over 1,700 submissions of evidence from across England, Scotland, Wales and Northern Ireland.
The report showed that the NHS has failed in its commitment to provide communication equipment for people living with MND.
Inquiry on specialist palliative care for people
The APPG held a public inquiry into access to specialist palliative care services for people with MND living in England. This was the first inquiry to be held by the Group.
Evidence was collected from a wide range of individuals and professionals including people with MND, past carers, neurologists, palliative care consultants, hospices and charities. Members from the APPG on MND also heard people’s own experiences and accounts of the services during four evidence sessions held at Westminster.
The report, published in June 2011, found that access to services is patchy, services are fragmented and funding is under pressure. Access to palliative care remains a postcode lottery for many people with MND, with some people living with MND receiving excellent palliative care, whilst many others do not.
It is hoped that the recommendations outlined in the report will help to reduce the amount of suffering endured by people with MND and, in the face of a significant squeeze on NHS budgets, deliver value for the public purse.