Husband's plea to care services to remember 'forgotten victims' of pandemic

Motor Neurone Disease patient Agnes Davy, with her husband John

Motor Neurone Disease patient Agnes Davy, with her husband John - Credit: John Davy

A Norfolk man caring for his terminally ill wife has issued a plea to health services to deliver on promises after being left exhausted by gaps in her care.

Agnes Davy, from Poringland, near Norwich, was diagnosed with Motor Neurone Disease (MND) four years ago and now has late stage MND, which has left her quadriplegic and requiring a breathing machine. 

The 57-year-old is cared for by her husband of 21 years John, who was delighted when a Continuous Health Care (CHC) package was put in place for home nursing to help to cope with his wife's needs. 

Mr Davy, 58, said: "You become a fully mentally astute person who becomes a prisoner in your own body."

Mrs Davy worked as a radiologist for more than 30 years across hospitals in Norfolk, and has care provided by a private company, contracted and paid for by the Norfolk and Waveney Clinical Commissioning Group.

The couple was promised a team of six would provide four visits a day and some overnight stays, but this has been provided by one carer since April. 

Mr Davy said families should not be abandoned in the pandemic, having experienced staff not turning up for night shifts or inexperienced staff sent when their main carer needed to isolate.

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The former police officer said: “This means I have to work all day and night to ensure Agnes is safe – and continue to do my job to keep paying the bills. 

“We are the forgotten victims of the pandemic – not suffering from the disease itself but the incompetence and mismanagement that it has exposed. I am exhausted.

“We have been promised a team of six – but so far just one young woman has been assigned to the case. Wonderful as she is – she can’t fulfill the hours needed to make Agnes feel safe and looked after.”

Alex Massey, policy manager at the MND Association, said CHC was a vital source of support for families to access essential care and the issues were widespread.

A CCG spokesman said it continues to look at ways to improve healthcare services in the region, adding: “We are aware this has been an anxious time for the family and we have been working closely with them to ensure both the carer and patient’s support needs are met. A package of care has been put in place which the family has confirmed they are happy with.”

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