Glenn Phillips: dying of motor neurone disease, but told 24 hour care is "too expensive" (From Watford Observer)
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Glenn Phillips: dying of motor neurone disease, but told 24 hour care is "too expensive"
A man from Bushey who is dying from a disease that is slowly taking over his brain and spine was told he could not have 24 hour care because it was "too expensive".
Glenn Phillips was diagnosed with motor neurone disease in 2011. The disease affects neurones in the brain and spinal cord, leading to loss of mobility, difficultly with speech, swallowing and breathing.
There is no known cure and roughly 50 per cent of people with the condition die within 14 months of diagnosis.
He is currently receiving 40 hours of care a week in his home, but following a fall, is asking the county council for someone to look after him around the clock.
He said: "About three weeks ago I fell backwards out of bed in the morning before my carer got here. I hit the back of my head on the floor and couldn’t move. I was next to the radiator, which was on, so I was boiling hot.
"I was on the floor for an hour before my carer found me, and she called for an ambulance right away. I really smashed my head and have been dizzy ever since.
"I have been asked for 24 hour care for some time and the fall made it clear to me that I needed it, but my social worker said the council couldn’t pay for it.
"He rang his boss to try and sort something out. He arranged 24-hour care for five days, and said we would meet and discuss it again. That was a really difficult time."
At the end of the five days a team of nine people came to Mr Phillip’s home to assess him. He was then told he needed to go into a nursing home.
He said: "I asked ‘why?’ and they told me it was down to cost. They couldn’t afford to fund the 24 hour care.
"They told me it would cost £1,750 a week and that they couldn’t pay that, but they would pay £1,000 a week for the nursing home.
"I want to live out the rest of my short life in the comfort of my own home. I have everything I want here, my belongings and all my records.
"A nursing home would not give me the care I need. I’m not 92-years-old."
The council arranged for emergency funding to give Mr Phillips 20 hours of care a day for four weeks, which will run out on March 12.
Despite his condition Mr Phillips has managed to get to White Hart Lane to watch Tottenham Hotspur, thanks to donations of tickets from Watford Observer readers.
He said: "In the mean time this has caused me a lot of anguish. That has really stressed me out. I should be enjoying things like going to Spurs but all that has gone into the bin.
"The Motor Neurone Disease Association have stepped in and agreed to fund the four hour shortfall. I don’t know how the council have been able to get away with this."
Mr Phillips said the council’s plan was to put him on the NHS’s ‘continuing care’ pathway in order to find the funding for the 24 hour care he wants.
He added: "You have to be severely ill for that and I need social care rather than nursing care."
Andrew Dawson, Hertfordshire County Council spokesman, said: "We have met with Mr Phillips to discuss his needs and desire to stay at home.
"We are doing everything possible to try and accommodate his wishes while still ensuring he has access to the care he needs.
"In the meantime, we have increased the hours of his home care package and provided an emergency night-sitting service so he can continue to stay at home.
"We are committed to caring for residents in a way which ensures they have control and choice over how their needs are met."
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