Disabled couple 'frightened' by care delays

Both a couple with muscle exhaustion problems have said that delays in the care system have left them in a constant battle for their basic rights. Charlotte and Tom Hardwick, 33 and from Beechdale, Nottingham, have various forms of muscular dystrophy and require round-the-clock care. They claim that unnecessary paperwork has resulted in delays such as three months for wheelchair repairs and a two-year fight to get a shower chair. The NHS Nottingham and Nottinghamshire Integrated Care Board (ICB), which provides care for the couple, said it will

work with them to determine the level of assistance they receive

for the children.

Mr Hardwick was diagnosed with his illness at five years old, and he said his parents were told he would not live to adulthood. Mrs Hardwick was not diagnosed until she was 21 years old. The couple said their health had been good before the pandemic, but that after the pandememic, they had decreased, with reported problems including delays in obtaining information and equipment.

When my wheelchair broke, it took Tom three months to get the parts,

Mrs Hardwick said. It's also took two years to get a shower chair.Mr Hardwick said she felt the available help had been reduced and left them in a frightening situation.

It seems that the network of healthcare professionals has gotten smaller and smaller,

she said. That safety net really has just gone.We feel frightened when illnesses or new signs appear, because it's just so difficult to get advice or it'll be six months before your next appointment.

'Holistic support'

The Hardwicks now receive payments that allow them to hire a team of carers more effectively, but they claimed that this was a full-time job.You have to fight on so many fronts,

Mrs Hardwick said. Muscular Dystrophy UK has developed a 10-year plan to improve the care and support of the country's more than 110,000 children and adults, with one of more than 60 muscle-wasting disorders.

People are waiting longer for appointments and finding things like wheelchairs and home adaptations is frustrating,

Andy Fletcher, the charity's chief executive, said.

People like Tom and Charlotte need holistic help to ensure they live well and stay healthy for longer.

We're sorry to learn that Tom and Charlotte are dissatisfied with certain aspects of their care, and we'll work with them to determine the type of assistance they receive and how it could be modified to suit their needs.

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