\n<\/p>\n
People with motor neurone disease (MND) are dying waiting for grants to make their homes fit to live in due to a huge backlogs in applications, campaigners have said.<\/p>\n
The MND Association has found it takes an average of 375 days for people in England to get essential home adaptations through the government\u2019s disabled facilities grant (DFG) due to growing delays in the system.<\/p>\n
But a third of people with MND die within a year of diagnosis, and about half die within two years, meaning they are spending the last months of their lives fighting for support, with many dying in unsafe and unsuitable homes.<\/p>\n
The charity\u2019s chief executive, Tanya Curry, said: \u201cFor someone whose condition may progress dramatically in a matter of months, waiting a year or more for vital adaptations is equivalent to being denied them altogether.\u201d<\/p>\n
Nicole Foster, 56, was diagnosed with MND in May and has spent her entire life\u2019s savings, as well as money fundraised on her behalf, replacing her bathroom with an accessible one after she was told she faced a two to three-year year wait for DFG funding.<\/p>\n
\u201cI said I can\u2019t wait that long, I\u2019ll be dead in two to three years. All I got from the council was an extra handrail on the stairs,\u201d she said. \u201cI\u2019ve had a really responsible, hardworking job all my life and paid loads of tax, but when it comes to me needing anything back you just get forgotten about.<\/p>\n
\u201cI should have been using my money to go on holiday and spend quality time with my family with the time I have left.\u201d<\/p>\n
Foster has also been told she needs a through-floor lift, but faced with another lengthy wait she ended up paying for a stairlift. \u201cThere\u2019s no way I could afford to spend \u00a318,000 on a lift,\u201d she said.<\/p>\n
Foster said she has fallen at home a number of times, the main reason why her husband has given up his job to care for her, and someone who came to assess her home said they were \u201cembarrassed\u201d she wasn\u2019t a priority.<\/p>\n
<\/span>Foster says she has fallen numerous times at home, forcing her husband to give up work to care for her.<\/span> Photograph: Richard Saker\/The Guardian<\/p>\n \u201cI can\u2019t be left on my own because I can\u2019t get up and get to places safely. What do you have to be to be a priority? I can\u2019t really walk and I\u2019m not safe on the stairlift, but I still have to jump through hoops to get anything,\u201d she said. \u201cPeople with MND, none of us are going to get better. They need to have a care package ready to go.\u201d<\/p>\n Via freedom of information requests, the MND Association found the average time from submitting a DFG application to work being completed was 375 days in England, 357 days in Northern Ireland and 289 days in Wales.<\/p>\n Administered by local councils, and funded by central government, the grants pay for adaptations such as stairlifts, door widening and ramps, which are essential for people with MND whose mobility can rapidly decline.<\/p>\n \u201cThe current timeline is just totally unworkable and unacceptable and we need local authorities committing to getting things done much more quickly,\u201d said Alex Massey, head of campaigning, policy and public affairs at the charity.<\/p>\n \u201cIf you leave people waiting over a year to get the actual work done, that is going to leave people in very, very difficult situations where they\u2019re effectively trapped in an unsafe and unsuitable home.\u201d<\/p>\n Massey said people have been left washing in their kitchen sink for months, or sleeping on their living room sofa, because of delays in getting access to funding.<\/p>\n The MND Association wants the government to introduce a formal fast-track process for people with the disease and other rapidly progressive conditions, as well as waive the means test for adaptations for people with such illnesses.<\/p>\n \u201cWhen someone is living with a terminal, often rapidly progressive, condition like MND, they need to be fast-tracked. They need to be prioritised. The application needs to be treated as urgent because those needs are only going to progress over time,\u201d Massey said. \u201cAnd means-testing doesn\u2019t take into account that they are probably going to have to quit their job at some point.\u201d<\/p>\n A Ministry of Housing, Communities and Local Government spokesperson said: \u201cWaiting for disabled facilities grant funding can have a devastating impact on people\u2019s lives which is why we expect local authorities to progress as quickly as they can.<\/p>\n \u201cWe\u2019re taking action by investing \u00a3711m investment in the grant to cut down waiting lists, fund thousands of additional home adaptations and ensure that seriously ill people get the home adaptations they need.\u201d<\/p>\n Quick Guide<\/span><\/p>\n <\/span>Show<\/span><\/span><\/p>\n The best public interest journalism relies on first-hand accounts from people in the know.<\/p>\n If you have something to share on this subject, you can contact us confidentially using the following methods.<\/p>\n Secure Messaging in the Guardian app<\/strong><\/p>\n The Guardian app has a tool to send tips about stories. Messages are end to end encrypted and concealed within the routine activity that every Guardian mobile app performs. This prevents an observer from knowing that you are communicating with us at all, let alone what is being said.<\/p>\n If you don’t already have the Guardian app, download it (iOS\/Android) and go to the menu. Select \u2018Secure Messaging\u2019. <\/p>\n SecureDrop, instant messengers, email, telephone and post<\/strong><\/p>\n If you can safely use the Tor network without being observed or monitored, you can send messages and documents to the Guardian via our SecureDrop platform.<\/p>\n Finally, our guide at theguardian.com\/tips\u00a0lists several ways to contact us securely, and discusses the pros and cons of each.\u00a0<\/p>\n Illustration: Guardian Design \/ Rich Cousins<\/p>\n Thank you for your feedback.<\/p>\n","protected":false},"excerpt":{"rendered":" People with motor neurone disease (MND) are dying waiting for grants to make their homes fit to live in due to a huge backlogs in applications, campaigners have said. The MND Association has found it takes an average of 375 days for people in England to get essential home adaptations through the government\u2019s disabled facilities<\/p>\n","protected":false},"author":1,"featured_media":39001,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[51],"tags":[2304,1185,7142,4391,311,456,7119,21239,1476,7242],"class_list":{"0":"post-39000","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-adaptations","9":"tag-campaigners","10":"tag-die","11":"tag-disease","12":"tag-england","13":"tag-home","14":"tag-motor","15":"tag-neurone","16":"tag-patients","17":"tag-waiting"},"_links":{"self":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/39000","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=39000"}],"version-history":[{"count":0,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/39000\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/media\/39001"}],"wp:attachment":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=39000"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=39000"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=39000"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}Contact us about this story<\/h4>\n