The progression of motor neurone disease can be cruelly fast.

The last thing families affected by it need, then, are delays in getting the vital support they are entitled to.

But in households across the UK, red tape and the stuttering mechanics of local councils are causing needless hold ups in essential home alterations. Ultimately, people with the disease are becoming trapped in unsuitable housing conditions, a new study has found.

A core problem highlighted in the report is the patchy nature of how Disabled Facilities Grants (DFGs) are delivered to people with MND.

DGFs enable various accessibility measures such as ramps, wider doorways, wet rooms – or any other change that makes home life possible as the disease’s influence on mobility grows.

It is means tested and available in England, Wales and Northern Ireland.

The findings suggest that many people with MND are struggling to access them at all, or at least within a reasonable time frame.

The end result is a litany of horror stories in which patients and loved ones are being let down by a system supposedly designed to help them.

One personal account in the Motor Neurone Disease (MND) Association’s report details how workers turned up to adapt doorways for a wheelchair on the day that the individual died – such had been the delays to the process.

Another respondent in the charity’s Act to Adapt report says: “We applied for financial aid but were turned down for any assistance as we both worked.

“We were told to reapply when our circumstances changed. As far as we were concerned they had already changed dramatically and we didn’t have time to wait! Joe’s work colleagues, family and friends began raising money to have our house adapted.

“As it turned out, it really was too late for Joe. Seven months after diagnosis Joe died. The whole process was shocking to me. I couldn’t believe that we were basically told we would have to do it ourselves.”

Among similarly bleak anecdotes, one family member notes: “The ramp and wheelchair came too late and because of length of time for grant for wet room we had to make do with a poor version that flooded every time we used it.”

Another says: “MND is a disease where you are always chasing your tail. One day you are ok … the next you have lost a personal faculty. Property adaptations for people [with] MND should be impressively proactive – more in expectation than reaction.”

Around 4,500 people in the UK have MND. Statistically, a third will die within 12 months of diagnosis and more than half within two years.

A speedy DFG outcome is clearly required against such time frames but, as Alex Massey, policy manager for the MND Association explains, it is not always achieved.

“The main issue our report brings out is the length of time it takes to access support for people who need to adapt their home. In many cases, the timelines are simply far too long.

“MND is a very rapidly progressing condition. When you have a situation where the application for a grant takes six months to process, that’s totally inappropriate.”

Costs keeping families trapped  

The charity surveyed 850 people, including those living with MND, carers, health and social care professionals and the charity’s own volunteers.

Of the 387 respondents affected by MND as a patient, carer or loved one, 96 per cent cited the cost of adaptations as a major barrier to adapting their home.

A further 39 per cent blamed a lack of financial help for adaptations or house moves.

A fifth said the length of time it took to hear whether they were eligible for grants such as the DFG was a problem and 23 per cent pointed to a lack of support from local services.

Professionals were also asked what they felt were the biggest barriers people living with and affected by MND faced when securing accessible housing.

Of 92 respondents, 87 per cent highlighted the emotional burden of having to organise adaptations or move home.

The MND Association says its staff strongly agree with this, and it was a theme at its recent “engagement events”.

Eighty three per cent indicated that a lack of available accessible homes was a barrier, and three quarters chose the length of time waiting for an accessible home.

A creaking system 

Massey also points to the use of an outdated means test which potentially leads to individuals being unfairly rejected for DFGs.

To qualify for a DFG, a person must demonstrate that the work is ‘necessary and appropriate’ to meet their needs, including moving around and getting in and out of their property, and that the work is ‘reasonable and practicable’.

There is also a ‘test of resources’, which is based on household income and savings.

Certain benefits, such as Employment and Support Allowance and Universal Credit, mean that a person will be passported through the means test.

Massey says: “The means tests look at income and assets, but what it doesn’t look at is the real cost of living and coping with a highly disabling progressive condition like MND.

“The cost of care and support, additional costs for things like energy and transport all add up, so people find they are hit with significant financial costs which can be difficult to manage.”

This was echoed in the report, with a consensus of people stating that the means test for DFGs is unfair, particularly in terms of both the low savings limit and the fact that it does not consider real outgoings, which can be substantial for someone with MND.

MND Costs – a separate MND Association study and campaign – found that the extra regular and enhanced costs of managing the disease equates to £9,645 per year, not including one-off costs for equipment and adaptations.

“A lack of flexibility, or realistic consideration of the loss of income working aged people with MND will often face, can also result in both delays and financial hardship” says MND Association in its latest report.

“Problems are also caused by the fact that the test of resources is based on household, rather than individual, income,” it continues.

Darren Buckey, motor neurone disease patientDarren’s story 

Darren Buckley (pictured) is among those with MND that was turned down for a DFG, having been diagnosed in August 2018.

“When I applied for the DFG, a woman from the council came to see me at my home.

“The first thing she said which made me feel optimistic was that ‘we’ve got half a million pounds of funds available this tax year for adaptations’.

“I then went through all the questions she said it would take a couple of days to be fed into the computer and it would be a ‘yes’ or a ‘no’. I thought that sounded reasonable.

“Unfortunately I didn’t get the outcome until a week to 10 days later when I got a phone call – no written information – from the same officer.

“She said that the computer had basically said I was able to contribute £140,000 towards adaptations in the house so I was not entitled to a penny for major adaptations work.”

Darren immediately requested written confirmation of his DFG rejection to support his case for charitable funds.

“It took three weeks for them to reply with a written note to say my DFG was not successful. So that wasn’t a good start.”

Darren contacted local builders and architects and used his medical retirement pension fund to adapt his home – with some additional charitable support.

“I was lucky to have that, I know some people don’t. But then after I had been told I couldn’t have anything from the DFG, I was then informed I could have minor works done worth up to £1000 – for things like a stair rail or shower seat.

“I was hoping to get my wet room up to standard and asked whether they could fund a specialist toilet or a ceiling hoist for my future development.

“The OT was then told by their manager that there was no further funding from council. I heard nothing from my OT after that until recently when my bedroom was being completed I was asking about a hospital profile bed.

“I went back to the OT team and they told me my case was closed because I was no longer a priority.”

In the end, his GP stepped in and helped him to the secure the bed he needed without the council’s input.

“The only support I got from the council was before I applied for DFG when they put in a stair rail and shower-board when I was still able to walk. From an OT point of view with my local council, the word I would use is shocking.”

Overall, Darren found the DFG process frustrating at a time when he was adjusting to the realities of living with a terminal condition.

“The council came out for the DFG and said ‘oh great you’ve got a garage, it’ll be good for the future, you’ll be able to have ground floor living’. Then said, ‘no you can’t have anything’. That was a smack in the teeth but I thought I had to go through them because I pay my council tax and should go through them for my social needs.

“The community nurse said to me last week, ‘you shouldn’t be paying for all this’ but I’ve got no choice when I keep getting told that there’s no funding.”

Rising costs 

The MND Association’s report shows that the average value of a DFG rose from just over £7,000 in 2009/10 to nearly £9,000 in 2016/17, reflecting increases in building costs.

There is considerable regional variation, however; in London, only a third cost less than £5,000, whereas in most other areas between a half and two thirds are under £5,000.

The average cost of the two most common adaptations is £5,000, for showers, and between £2,400 and £4,500 for stairlifts.

The impact of such changes can be priceless, however.

“I have had a week of using the facilities,” says Darren of his adaptations.

“It’s like a new lease of life. It has really made me feel like myself, I can do these things again.

“I’m able to live and dress independently. This morning it probably took me about 55 minutes to an hour to get ready, but I have done it myself, so I still feel good about it.”

On the importance of accessible housing, the report says: “Being trapped in inaccessible housing is linked to a range of negative impacts on physical and mental health, resulting from factors such as isolation and loneliness, lack of physical activity, disengagement from family and community, and unsafe environments contributing to accidents such as falls.

“For disabled people and people with health conditions, homes need to be built around their needs.”

The DFG scheme is 30 years old this year and has, of course, helped many people to tailor their homes to their needs.

But MND Association’s data suggests accessing it is something of a post code lottery. Responding to freedom of information requests, 26 English councils said they spent less than 50 per cent of their DFG budget in 2016/17, while 80 spent 100 per cent or even more.

The funding allocation process for councils is not transparent, says the report, so ascertaining reasons for these discrepancies has proven challenging.

Recommendations

The Act to Adapt report is now calling for a number of changes at local and national government levels in how the scheme is delivered – and more broadly – to improve swift access to suitable housing for people with MND.

Massey says: “We really want to encourage local authorities to build on some of the best practice that exists out there so that we start to see good practice spread more widely across the country.

“We would also like to see them all keeping an accessible housing register; because it’s not just about existing homes, but also about supporting people to find alternative accommodation.

“Also, it can be very difficult to simply know what options are out there in terms of which properties are accessible, which is not something you can usually find out from your local estate agent.

“Accessible housing is a fundamental right that needs to be respected and delivered.

“I think it’s pretty well accepted now that there are strong links between appropriate accessible housing and health and wellbeing outcomes.”

The recommendations in the report include the introduction of a fast-track process for adaptations under £5,000 to be implemented by all authorities responsible for DFGs.

The report also urges discretionary support in certain circumstances, for example for people with a terminal illness.

Sharing of good practice in terms of providing advice, support and information is also encouraged.

Read the Motor Neurone Disease Association’s report in full here.