All-Party Parliamentary Group on MND
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 current officers of the group are:
Chair - Andrew Lewer MBE MP (Conservative, Northampton South)
Vice-Chairs - Brendan Clarke-Smith MP (Conservative, Bassetlaw), Chris Evans MP (Labour, Islwyn), Christine Jardine MP (Lib Dem, Edinburgh West) and Mark Tami MP (Labour, Alyn and Deeside). Secretary - Rosie Duffield (Labour, Canterbury)
The MND Association provides the secretariat to the Group. For further information please contact Alison Railton on firstname.lastname@example.org or call 02038 758902.
The meeting will focus on access to housing adaptations and accessible housing for people with MND and their families. Many people with MND struggle to access suitable housing in a timely way, yet it is crucial to enable them to live safely and with dignity in the time they have left.
The following speakers will be joining us:
- Sally Light, CEO, MND Association
- Alex Massey, Policy Manager, MND Association
- A person living with MND
This is an online event via Teams. If you are an MP or Peer and would like to attend, please send an email to email@example.com to be sent a link for the meeting.
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. Further information on PIP can be found here.
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.
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.