A Lincolnshire man has accused the NHS of a “pathetic” offer of care for his wife, who suffers with motor neurone disease.
Paul Reeve, 53, of Barton-upon-Humber, retired in 2019 to help care for his wife Sandra, 59, who was diagnosed with the condition in 2011.
Doctors recommend care around the clock for the mother-of-two, which she received from the NHS until April 2023 – but she is now being offered just three hours of care at home by the service.
The NHS said 24/7 care would only be available in a nursing home, which the family and Sandra declined because they wanted her to remain at home – which has all the specialised equipment and space required
Mr Reeve said: “I think these cuts are happening across the board; it’s scandalous.”
He is now paying upwards of £5,000 a month for day-time care for his wife, with the family caring overnight.
MND impacts the brain and the motor neurones, which tell muscles what to do. It weakens the body gradually and eventually leads to death.
Sandra’s condition means she is is unable to move independently, is paralysed in all four limbs, has lost the ability to communicate and swallow safely, lost significant weight and requires breathing support, a feeding tube and more.
Mr Reeve said: “We’ve had to go private. I’m in the fortunate position where I can just about afford it, but most people cannot.
“It’s not value for money. It’s broken me. They say that caring is a one-person job; it’s not! I’m young and able enough to help. If I can’t do it alone, then nobody can.”
Mr Reeve has been meeting with MP Martin Vickers to raise the issue. A meeting between the two of them and local care board officials was cancelled by the officials 10 minutes before it was due to begin .
Experts are yet to identify a specific cause of MND. It is thought it is caused through a combination of genetic factors, environment and lifestyle. The MND Association says up to 5,000 adults in the UK can be affected by MND at any one time.
Sarah Parkin, a friend of the family, said: “I don’t see all of it, but all the carers get to go home and have their break. Paul doesn’t get that.”
LSJ News has approached the NHS for a response.
