The specialist care – provided by Oxfordshire company, Care with Heart – includes two carers and one staying overnight overnight. It costs £20,000 a month.
But after Thames Valley ICB’s online payment system failed to pay two invoices, in April and May, Care with Heart was left on the brink of collapse.
With the carers having built up a relationship with Charlie, Alison said having continuity of care was crucial to her daughter’s health and wellbeing.
It was only after Alison raised a safeguarding concern, over fears a sudden change in provider could raise Charlie’s cortisol to dangerous levels that would require admission to hospital, that the payments were made.
“Charlie has quite significant needs for the people who support her to know exactly how to support her.
“She needs her carers to know everything that’s required to support her,” she said.
Care with Heart founder Sophia Trinder said she was forced to borrow £13,000 to keep the company afloat, as unpaid CHC invoices mounted up to more than £60,000.
“Because we’re a small organisation and the care packages we provide are very big, they provide a high percentage of our income.
“And if there’s a problem with invoices being delayed, it makes us very vulnerable very quickly,” she said.