A terminally ill former care worker has been forced to spend a quarter of his remaining life fighting to get vital support from social services.
Dan Conway, 50, was diagnosed with Motor Neurone Disease (MND) last April and like most sufferers is expected to die within two years of being diagnosed. The average life expectancy is 14 months.
But Mr Conway who lives in the South Lanarkshire village of Leadhills claimed he has had to wait since September last year for the budget he needs to pay home care workers.
He worked for Key Housing as a support manager, but the neurodegenerative muscle wasting disease progresses rapidly and in August he was forced to give up his job.
In September, Mr Conway says he approached South Lanarkshire Council for support, but he received no response until the following month when he was eventually allocated a social worker.
He said by then daily life was a real struggle, and getting himself dressed and eating breakfast could take him until lunchtime.
Mr Conway says that he was given two half hours a day of homecare in the middle of November while an application for his own budget was being assessed. But this took another seven weeks and he was eventually awarded self-directed support on January 11.
This is meant to allow him to pay for carers to look after him himself, to suit his own needs. But Mr Conway says he still has not seen a penny of the money and is unable to employ carers as he doesn't know when his payments will start.
Mr Conway is not even sure how much to expect, he adds. "I was initially told £482 per week, then it was £280 then £350 then £424. It is completely confusing and there is no transparency."
One carer he did employ has left to take another job because there were more guaranteed hours available, Mr Conwa "I paid the carers I am using out of my own money two weeks ago and will have to pay them again in two weeks - but I can't afford to," he added.
Regardless of how long it takes to get the money - which he has now been promised will start this wee, Mr he is angry about how long he has had to fight for to get it, when he needs all his strength to cope with the effects of his MND.
"It's too late to change the last six months," he said. "A characteristic of my condition is low energy. What makes me really angry is that instead of having the energy to do things I want, at what is probably the end of my life, I'm spending all my energy battling social work."
Mr Conway's condition has significantly worsened since his last assessment in November. He can no longer use a computer keyboard, put on or take off a t-shirt, or feed himself.
"Since the assessment was completed in early November I'm now significantly more disabled than I was then. God knows how long it will take them to adjust the figure to cope with what is a rapid progression," he said. "I'm concerned because I have worked in the care sector and know the system. If I wasn't able to speak up for myself who knows where I'd be.
"I know the pressures on social welfare budgets but there are the same pressures everywhere in Scotland."
Craig Stockton, chief executive of MND Scotland, said, the charity had written to the council to highlight its concerns.
He added: “People with MND have an average life expectancy of 14 months from diagnosis, therefore the process for putting the correct payments in place needs to be quick. Six months is far too long, people with MND simply do not have this time to wait," he said.
"MND Scotland are happy to meet with any local authority to highlight the time pressures involved with this disease, and to discuss any training or help we can offer people on the front line dealing with people with MND.”
A South Lanarkshire Council spokesman said the case was a complex one, but added: “We are aware of Mr Conway and all steps have been taken to ensure that effective communication and timeous responses have been given and agreements are in place”
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