Care home closure sees parents faced with 260-mile round trip to see disabled daughter

  • Angie and David Lay said they were "devastated" at the closure of their daughter's care home

The parents of a disabled woman who now face a five-hour round trip to see her have described a decision to close her care home as "unforgivable".

Katie Lay, 41, has Dravet Syndrome, which has rendered her non-verbal, with learning disabilities and at risk from devastating seizures. She also has a much higher likelihood of Sudden Unexpected Death in Epilepsy (SUDEP).

She needs round-the-clock care, which for the past 22 years has been provided at St Elizabeth’s Adult Care Home in Much Hadham, Hertfordshire.

It is just 45 minutes away from where her parents, Angie and Dave, live in Sandy in Bedfordshire.

But the home is now closing, having been rated Inadequate by the Care Quality Commission (CQC), which also cancelled the home's registration.

Angie Lay said her daughter Katie is a "strong cookie" who "lives in the moment". Credit: Family photo

The next nearest suitable care home for Ms Lay is in Stoke - 130 miles away from her parents' home, or a five-hour round trip.

The care home said it had struggled to hire sufficient trained staff to secure a safe environment.

The Care Quality Commission is responsible for checking health and social care services are up to standard. After rating St Elizabeth's Care Home as Inadequate, the watchdog cancelled the service's registration, a decision Mr and Mrs Lay called "unforgivable".

"That’s the first Inadequate rating they’ve ever had, they’ve always had Good," said Mr Lay.

"The CQC is this almost faceless organisation that has made a decision, that nobody's able to question... and walked away, which I find unforgivable."

Mrs Lay added: "We are devastated. There's no two ways about it.

"We thought St Elizabeth's was a home for Katie for life. She's been there for 22 years and she's 41. We're both in our 60s... We really thought once we'd gone, she would still live a life there." 

St Elizabeth's Care Home will be closing, but other services on site will stay open. Credit: ITV News Anglia

The care home said in a statement: "In the last two years, St Elizabeth’s Adult Care Home has faced two unprecedented challenges – the Covid-19 pandemic, and a chronic national shortage of trained staff.

"The latter has placed our organisation under relentlessly increasing pressure and it has become only too clear that we can no longer guarantee the safety of our adult residents because we cannot recruit and retain sufficient numbers of trained staff."

It said that after consultation "in the best interests of those in our care, and with no prospect of safely staffing the service in the longer term or meeting the standards required of us" the trustees had "reluctantly concluded" they would have to close the home at the end of November.

"It is heartbreaking to have to take this step, but any compromise to the safety of residents or reduction in the quality of our care is simply not in keeping with our ethos, and is a long way from the type of service we have made our name in providing," the statement added.

In a statement the CQC said: “CQC has taken action to remove St Elizabeth’s Care Home with Nursing and St Elizabeth’s Domiciliary Care Agency from the registration of the St Elizabeth’s Centre.

“We took this action because we believe if we didn’t, people using the service may be exposed to the risk of harm.

“St Elizabeth’s Centre, as provider of the services, has the right to appeal before the cancellations take effect. CQC will publish any further information about this action when it is able to do so."

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