Disabled Nottingham couple ‘frightened’ by care delays | UK News

A couple with muscle-wasting conditions have said delays in the care system have left them in a constant fight for their basic rights.

Charlotte and Tom Hardwick, both 33 and from Beechdale in Nottingham, have different types of muscular dystrophy and need round-the-clock care.

They feel unnecessary paperwork has resulted in delays such as waiting three months for wheelchair repairs, and a two-year battle to get a shower chair.

The NHS Nottingham and Nottinghamshire Integrated Care Board (ICB), which provides care for the couple, said it would “work with them to review the type of support they receive”.

Mr Hardwick was diagnosed with his condition at five years old – he said his parents were told he would not live into adulthood.

Mrs Hardwick was not diagnosed until she was 21.

The couple said their care had previously been good but had declined since the pandemic, with reported issues including delays in accessing advice and equipment.

“When my wheelchair broke, it took Tom three months to get the parts, which is too long for someone that relies on a wheelchair for all their mobility,” said Mrs Hardwick.

“It also took two years to get a shower chair.”

Mrs Hardwick said she felt the available support had reduced and left them in a “frightening” situation.

“It feels like the network of support from healthcare professionals has got smaller and smaller,” she said. “That safety net really has just gone.

“We feel frightened when we have illnesses or new symptoms come up, because it’s just so hard to get advice or it’s a six-month wait until your next appointment.”

The Hardwicks now receive payments that allow them to directly employ a team of carers, but they said managing this was “a full-time job”.

“You have to fight on so many levels,” said Mrs Hardwick.

The charity Muscular Dystrophy UK has launched a 10-year strategy to improve the care and support of the more than 110,000 children and adults in the UK, with one of more than 60 muscle-wasting conditions.

Andy Fletcher, chief executive of the charity, said: “What we see overall is that people are waiting longer for appointments and struggling to access things like wheelchairs and home adaptations.

“What people like Tom and Charlotte really need is that holistic support to help them live well and stay healthy for longer.”

A spokesperson for the ICB said: “We’re sorry to hear that Tom and Charlotte are unhappy about some aspects of their care and will work with them to review the type of support they receive and how it could be changed to suit their needs.”