MPs support improved access to housing adaptations for people with MND

APPG screenshotThe All-Party Parliamentary Group (APPG) on MND held an online AGM today, with a focus on access to housing adaptations. Speakers included: Alex Massey and Jonathan Collier from the MND Association; Christine Panayi and Jacqui Ford who are both former MND carers; and Christina Rees MP.

Alex gave an overview of the policy background in relation to housing adaptations, including the funding and means testing system. A survey carried out by the Association found that some of the main obstacles facing people with MND were the cost of adaptations and the lengthy application process. Recommendations to the Government include increasing funding for Disabled Facilities Grants (DFG), a review of the mandatory means test, and a requirement to build all new homes to an accessible standard.

Jonathan talked about the Act to Adapt campaign which seeks to influence local authorities to improve the provision and delivery of housing adaptations. The campaign calls on councils to introduce a fast-track process for people with MND and remove the means test for adaptations under £5,000. He shared examples of good practice where this is already taking place and the positive impact it has had on people with MND needing to adapt their homes.

Vice Chair of the APPG, Christina Rees MP, gave an update on the Welsh Homes for MND campaign which led to a historic vote in the Senedd to introduce a fast-track and non-means tested housing adaptations process for people living with MND in Wales. This campaign success was described as a template to help achieve change more widely across the UK.

Jacqui and Christine shared their experience of navigating the housing adaptation system. Jacqui’s husband Chris and Christine’s partner Ray were living with MND and have both sadly passed away. Jacqui described how they had to self-fund the adaptations Chris needed as applying for funding via the DFG process would have taken too long given his rapidly deteriorating condition. Christine said the process of applying for adaptations was a “living nightmare.” She said everything was done “too late” and her partner Ray did not get the support he needed or deserved.

A statement from Nicola, whose husband Simon is currently living with MND, was also read out which highlighted the challenges they have faced in applying for adaptations to meet Simon’s needs. They have had to fund these adaptations themselves. Nicola stated that councils must understand the needs of people living with MND and how important it is to act quickly to enable them to live safely, independently and with dignity in their own homes.

We would like to say a huge ‘thank you’ to all our fantastic and committed supporters. Almost 700 of you took part in our ‘invite your MP’ e-action and, because of your support, 25 MPs were represented at the meeting.

The annual election of officers also took place, with Andrew Lewer MBE MP standing again as Chair, Barbara Keeley MP, Brendan Clarke-Smith MP, Chris Evans MP, Christina Rees MP, Christine Jardine MP, Jessica Morden MP and Mark Tami MP as Vice Chairs, and Rosie Duffield MP as Treasurer. The APPG was delighted to welcome Sir John Hayes MP and Steve Baker MP to the Group as Vice Chairs.

MPs represented at the APPG meeting
Andrew Lewer MBE MP
Alberto Costa MP
Amanda Solloway MP
Barbara Keeley MP
Brendan Clarke-Smith MP
Chris Clarkson MP
Chris Grayling MP
Chris Evans MP
Christina Rees MP
Christine Jardine MP
Sir Graham Brady MP
Henry Smith MP
Ian Byrne MP
Jason McCartney MP
Dr Luke Evans MP
Mark Tami MP
Nia Griffith MP
Karin Smyth MP
Kerry McCarthy MP
Richard Fuller MP
Dame Rosie Winterton MP
Sarah Olney MP
Simon Fell MP
Stephen Hammond MP
Steve Baker MP

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.

Find out more about the All-Parliamentary Group on MND

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mndconnect 0808 802 6262