Pandemic backlog could leave more people with motor neurone disease ‘trapped in homes’

People living with motor neurone disease (MND) are becoming trapped in inaccessible homes due to a failure to deliver essential home adaptations.

There are fears the situation has been made worse by the pandemic, according to the Motor Neurone Disease Association.

A report by the charity, carried out before the pandemic, revealed terminally ill people are living for months, and in some cases dying, before even the most basic adaptations can be made to their homes to meet their changing needs.

ACT TO ADAPT

The report, Act to Adapt, surveyed 850 people, including those living with MND, carers, health and social care professionals, and MND Association volunteers who support people with the disease.

The length of time, cost and lack of support were highlighted 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.

“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 at what is already a difficult time,” explains Alex Massey, policy manager at the MND Association.

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.

“While compiling the report we heard stories of builders turning up to start adapting homes on the day the person with MND died. It’s just not good enough.”

DELAYS

Alex continues: “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.” 

Now, the charity is concerned that the pandemic lockdown will have extended the waiting time both for applications for grants to be awarded and for work to be carried out.

In 2016/17 the average time between applying for a Disabled Facilities Grant (DFG) and completion of a housing adaptation was more than 27 weeks – with some people waiting up to a year.

FUNDING

Carolyn and Lee

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.

After coming out of hospital, Carolyn’s husband Lee had to resort to showering Carolyn in their camping pod because she couldn’t use the over bath shower. This, unfortunately, is an experience many families in the same position will have faced.

The couple couldn’t get funding, leaving Lee to renovate the bathroom into a wet room himself and even had to fit the ramp to the front door.

Lee says: “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.”

The Act to Adapt report found significant differences in the services provided by local authorities across England, Wales and Northern Ireland existed pre-COVID-19, with varying levels of funding available and no nationally agreed response timescale, creating a postcode lottery.

The cost of adaptations was a ‘major barrier’ for 96 per cent of respondents to the survey with 39 per cent also saying the lack of financial help has been one of their biggest issues. 

There are 1.8 million people with an accessible housing need in the UK yet only seven per cent of homes in England offer minimum accessibility features.

CHANGE

The Motor Neurone Disease Association is calling for a range of measures to ensure steps are taken at both national and local levels to ensure ‘housing matters’ for people with MND and other terminal illnesses.

These include, but are not limited to: 

  • A commitment from national governments to ongoing central funding for DFGs including raising the maximum grant level and recognising the real cost of delivering adaptations and support
  • Adoption by the UK government and national governments of Wales and Northern Ireland of the Equality and Human Rights Commission’s recommendation to require a proportion of all new housing to be built to accessible and adaptable standards
  • A fast track, non-means tested process for adaptations under £5,000 to be implemented by all authorities responsible for DFGs
  • Discretionary support to be made available in certain circumstances, for example for people with a terminal illness

To read more about Act to Adapt visit www.mndassociation.org