Pioneering MND Pledge launched by the Federation of Local Housing Associations in Renfrewshire and East Renfrewshire (FLAIR)

Six housing associations who make up FLAIR – Barrhead, Bridgewater, Ferguslie Park, Linstone, Paisley and Williamsburgh – have formally committed to enhancing their service provision for tenants and owners diagnosed with MND in their communities. On Tuesday 18^th November, FLAIR launched the first-of-its-kind cross-association pledge to support the housing needs of people living with MND.

MND, or Motor Neuron Disease, is a rapidly progressing terminal illness which can cause a person to lose the ability to walk, talk, eat or breathe unaided. In Scotland at any one time, around 460 people are living with MND, and almost 200 people are diagnosed each year. As a progressive, neurodegenerative condition, MND affects every part of a person’s life. The average life expectancy of someone diagnosed with MND is just 18 months from diagnosis. For most people diagnosed with MND, changes (usually in the form of adaptations) are often needed to enable people with the disease to make their homes safe and accessible. Some homes cannot be made accessible, and in these instances, people with MND will need alternative accessible housing. Long waiting lists and policies which don’t accommodate for rapidly progressing terminal conditions mean that people are left trapped in unsafe homes, sometimes in a single room, washing family members on garden decking, and taking on debt.

FLAIR’s pledge is the first of its kind cross-association commitment supporting people with MND in Scotland. Their written pledge sets out a number of commitments, including fast-tracking adaptations and accessible housing allocation processes for those with MND and similar rapidly progressing terminal illnesses within their communities. This means that people with MND will not be added to long waiting lists, as is common practice across the country. Instead, proactive, exceptional approaches will seek to provide the timeliest support possible.

FLAIR also pledges to more new homes being built to wheelchair accessible standards to ensure a greater number of accessible properties are available in the future. The pledge also sets out commitments including taking a person-centred approach to adaptation needs and policies, creating a single point of contact within the associations, and to increasing knowledge and training around MND.

Dr Jane Haley says:

We are so grateful to FLAIR for committing to this pledge. Every day we hear from people with MND who have been left in desperate housing situations because of slow processes, long waiting lists, and a lack of accessible homes. The work FLAIR has done sets a benchmark for what is needed across the country for people with MND. We look forward to continuing to work with them, and hope that this marks a blueprint for others to take forward across Scotland.

Suzanne Austin, Vice-Chair of Bridgewater Housing Association and FLAIR Spokesperson says:

“This pledge is a landmark moment for housing in Scotland. It is the first of its kind, and we are proud that FLAIR is leading the way in ensuring people living with MND receive the urgent housing support they need. By working in partnership with MND Scotland, we can deliver a compassionate, person-centred approach that removes barriers and provides dignity at a time when every day matters. We hope this sets a blueprint for others across the sector to follow”.