Pandemic backlog could leave more people with terminal illness ‘trapped in homes’

Act to Adapt logo

The Motor Neurone Disease Association has launched its Act to Adapt campaign, calling for more accessible homes and a faster and fairer system for delivering housing adaptations for people with MND.

The campaign follows publication of the charity’s report which revealed people with MND are becoming trapped in inaccessible homes due to a failure to deliver essential home adaptations – others have died waiting for basic adaptations. And there are fears the situation has been made worse by the pandemic.

The length of time, cost and lack of support were highlighted in the pre-pandemic report, as the top three challenges people faced when trying to organise adaptations, such as hoists, ramps and wet rooms, to enable them to live with dignity and comfort in their home environment during their final weeks and months.

Carolyn and Lee Daglish

Carolyn Daglish, 36, was diagnosed with MND in February, by which time she was relying on a wheelchair and couldn’t get upstairs at her home in Wallsend, Tyne and Wear. Her husband Lee, 40, said:

“Carolyn came out of hospital and I was having to shower her in the wheelchair in our camping pod because she couldn’t use the over-bath shower, which was a nightmare. We couldn’t get funding to have our bathroom converted to a wet room because we have savings. In the end I bought all the materials and fitted the wet room myself. I did the same with a ramp for the front door rather than wait for someone to come and assess it and then go through the process. And the same thing happened with a wheelchair to suit Carolyn – we were warned we would have to be assessed and then a contribution may be made towards it. Again we ended up getting nothing and waiting weeks so bought our own. We feel like we’ve been penalised for working hard, saving and wanting to provide for our family – we have nine-year-old twin daughters. I don’t think you should be means tested for something like this which you need because of a disability. And the processes take so long – Carolyn doesn’t have time to wait.”

Alex Massey, Policy Manager at the MND Association said:

“Very simply the cost, lack of funding and timescales involved are causing people with MND, their families and thousands of others with terminal illnesses real hardship. MND is a progressive condition – a third of people die within a year of diagnosis and half within two years and during that time symptoms worsen and needs increase. People living with MND don’t have the luxury of time to wait.

“And of course the lockdown is likely to have exacerbated the situation, preventing work being carried out and slowing down processes as local authorities were forced to focus on other priorities.”

Housing adaptations are offered by local authorities in England and Wales, and the Northern Ireland Housing Executive. Schemes like Disabled Facilities Grants can provide vital support. To qualify a person must demonstrate the work is ‘necessary and appropriate’ and ‘reasonable and practicable’. The grants are means tested, but the means tests doesn’t consider the additional financial burden of coping with a progressive and disabling condition such as MND. In many cases homeowners must fund adaptations themselves or fund a shortfall between the grant and the cost of the work.

Alex said:

“During our research we unearthed examples of good practice so we know it can happen but sadly it’s not universal – yet. We want to see that change and for authorities to implement the best systems possible to ensure adaptations can happen in a timely, efficient manner with minimum impact on the people they are supposed to help.”

Visit the Act to Adapt hub

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262