An Ilkeston family say they are in crisis after their seven-year-old son, who has a life-limiting brain condition, had his care reduced. Patrick Langford requires round-the-clock care due to having pontine tegmental cap dysplasia, a rare condition that means he is unlikely to live until adulthood.
However, after three of his carers stopped working - reducing his hours from 118 to 46 - mum Vicki Langford has been forced to sometimes stay awake for more than 24 hours to support him. "At the minute I've got five nights uncovered," the 33-year-old told Nottinghamshire Live.
"I've got to stay awake for over 24 hours, drive a car to take my children to school, put myself and my family at risk - and other road users. Whilst I'm expected to do a night shift, the chances of me falling asleep is putting Patrick at risk."
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Mrs Langford recalled a time she went to the toilet for five minutes and returned to find her son's face covered in blood because he had been scratching his face. "He self-harms because he's got no nerves on his body," she said. "He could bite his tongue and bleed and choke on blood, he could scratch at his eyes, he could roll over and suffocate.
"If anything happened to my son could you imagine what I'd have to live with?" For the past five years the NHS have funded Mrs Langford's personal health budget, which she used to manage four carers. But now she says the Nottinghamshire Integrated Care Board (ICB) are failing to help her.
She said despite the fact the ICB knew one carer was about to go on maternity leave in late August no preparations were put in place. "They said they were going to arrange for a package of care to replace her," said the mum. "It's an absolute mess, for them to expect me to do what I've done is disgusting.
"When it came to the point where I needed their help I've been ignored basically. On Monday I had to take Patrick to the hospital as I couldn't stay awake for the time I'm expected to."
Patrick, who has a twin brother and two other siblings aged 13 and 12, requires specialist care due to his complex condition, meaning other family and friends are unable to help. Dad Dean Langord works long hours as an HGV driver, meaning the care he can provide is limited.
Mr Langford described the situation as "ridiculous", adding: "The pressure on the whole family is crazy. I help when I come back from work but I have to go to work at 4am so need an early night."
Mrs Langford said: "We are in crisis basically. And I know for a fact we aren't the only family, I feel so sorry about that. It's got to be voiced and raised, there's also families out there that don't get care, it's making me ill."
A spokesperson for NHS Nottingham and Nottinghamshire said: “We cannot comment on a patient’s individual case, but we are working very closely with the family to support them and are fully committed to ensure care is provided as required. We would welcome the opportunity to discuss this in more detail with the family directly through our Patient Experience Team."
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