A grandfather-of-five says a council decision to make him pay for his own care has left him struggling to afford his bills. Jeff Johnson, 56, has muscular dystrophy - a progressive muscle wasting condition that can lead to a severe loss of muscle mass and weakness.
It's incurable and the condition has meant Mr Johnson has spent the last 10 years in a wheelchair. He previously worked at a brickworks in Arnold and then in sales at a scooter restoration business. He made the decision to retire three years ago, as he had money set aside in his pension and his condition was getting worse.
A carer has been coming into his home, which he has owned for more than 20 years, to help him. This has been made possible through Nottinghamshire County Council's direct payment scheme.
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The county council scheme means those who qualify are given help to meet their needs for care and support and given a sum of money which is used to help pay for this. However, in January this year, Mr Johnson said the council reviewed his plan and decided he needed to contribute towards his own care, seemingly based on his previous financial situation when he was still earning a wage.
Mr Johnson, who lives in Jacksdale, said this had decimated his pension and left him with just over £150 to live on each month and go towards his food, bills, transport, paying off his mortgage and everything else in between. Despite cutting back on his spending, Mr Johnson claims he has been left £100 in the red every month.
"It completely turned my world upside down, if I'm honest with you," he said. "If I don't have any care I'm not going to be able to properly live my life and, if I continue paying what I do now, I'm not going to be able to do pretty much anything.
"I've never been in major debt before, I've always been sensible with my money. Now I am having friends who are offering me money and support. I've never been so humbled in my entire life.
"I have always given to charities but now I have had to cancel payments to two of them I used to give to. I just can't afford to give anything away anymore.
"Having to ask people for help, that's really difficult to accept. I went to the supermarket and I found myself having to put things back, things I would normally buy, and saying to myself 'you can't afford it this week'. It's quite an emotional thing, realising that you have to make a change like that."
Officials from the county council said they will work with Mr Johnson to see if additional help can be provided.
Mr Johnson told Nottinghamshire Live he challenged the decision but the changes were still in effect, leading him fearful for the future in light of increased energy bills. To make matters worse, Mr Johnson claimed he only found out about the change after he went online to pay for his care and found out he was £1,100 short as the letter notifying him of the changes had not been sent out to him.
Mr Johnson, a big Notts County fan, is facing up to making changes in the way he lives - such as perhaps having to stop going to watch his beloved Magpies play at Meadow Lane. Presents for his grandchildren, too, may have to take a backseat as he struggles to live on a day-to-day basis.
Mr Johnson is afraid he may lose his carers as a result of the rising costs. He continued: "It's not just about me, the biggest thing is that there will be other people like me who will have to give up any support they receive because they can't afford it.
"It's been very overwhelming. Before all of this, I was able to put the heating on for hours and know that I can afford it. Now I can't even turn the boiler on and I'm having to wrap up in my own home."
Melanie Brooks, corporate director at Nottinghamshire County Council, said: “I am sorry to hear that Mr Johnson is anxious about his care costs and we will ensure we work with him to see if further help can be provided, such as through our benefits advice service.
“As per national guidance, we have calculated the amount Mr Johnson can pay towards his care costs which is set by Government and known as the minimum income guarantee.”
An online fundraising page has been set up to support Mr Johnson - money can be donated by clicking here.
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