TRAPPED IN HOSPITAL FOR SIX MONTHS
Daughter begs for terminally ill father to have NHS care at home
A PENSIONER with only two years to live has been trapped in hospital for six months – despite his family wanting to take him home.
Allan Sheppard, 69, is unable to leave his intensive care bed because the NHS does not want to pay for local carers.
However, it is happy to pay £5,300 a week for a private nursing home in Peterborough – 77 miles away from his home in High Wycombe, Bucks.
His devoted daughter Simone, 34, has been her father’s main carer since he was diagnosed with motor neurone disease at the beginning of 2016.
“This situation is killing me,” she said yesterday. “We all just want Dad home. He wants to come home – his condition is deteriorating in hospital.
“I trained myself to look after him but I can’t
do it 24 hours a day. We need some help. He’s on a ventilator and can’t be left alone.
“He’s been in that hospital now without his friends, not sitting up, not going out. He’s only got a limited time left. I want him home. Peterborough is a long way from High Wycombe. It’s an hour and half drive at least. How can I do that every day?”
Motor neurone disease is the same condition that physicist Stephen Hawking suffered from before his death at 76 in March this year.
It is a fatal, rapidly progressing disease which attacks the nerves leaving people paralysed, unable to move, talk and eventually unable to breathe.
Mr Sheppard’s condition deteriorated to the point that he was admitted to intensive care at Wycombe Hospital in December last year.
Miss Sheppard, who was forced to resort to a solicitor and family advocate to help her fight her case against Buckinghamshire Healthcare NHS Trust, has also been banned from taking photographs of her father.
Hospital bosses have warned that they could “withdraw all NHS care” unless Mr Sheppard agrees to being sent away from his family.
Miss Sheppard, a former warranty claims engineer before she gave up her job to look after her father, found a local nursing care company which quoted £7,500 a week to help her care for her father, a former mechanic.
The cost of keeping a patient in an intensive care bed is around £14,000 a week – rising to as much as £10,000 a night for those suffering from spinal injuries and other complex conditions such as MND.
“Since he’s been in hospital he’s lost his voice and lost weight,” she said. “When he was at home he would have his dog Brogan and his friends around.
“We would take him out in his wheelchair to walk Brogan and he could sit in his garage where his friends would come round to work on our project car.
“This is all about money but where’s the sense in keeping him in an expensive intensive care bed instead of paying a lot cheaper rate to have him at home?
“I know that’s more expensive than the cost of the private home in Peterborough but it’s only for a limited time and he will be with his family and friends. His whole support group and life is here.
“When the solicitor received a letter saying NHS care could be withdrawn, it terrified me. What does that mean? He’s paralysed and on a ventilator. The hospital has already told me they will not resuscitate him if something happens, which is not what he wants.
“He wants to live but they also won’t give him any antibiotics if he develops an infection.
“When palliative care in a hospice was mentioned, I was shockingly upset. He’s stable, I’ve been told he’s got around two years, but Stephen Hawking made it to 76.”
This is not the first time the Sheppard family have come up against a funding block.
Miss Sheppard and her partner Ricky Thomas, 31, a fitness trainer and nutritionist, are £8,000 in debt after paying for care to supplement their efforts when funding was stopped last year before Mr Sheppard went into hospital.
Chris James, director of external affairs at the Motor Neurone Disease Association, said: “It’s important that
people with terminal conditions like motor neurone disease have maximum choice and control over their care package – including their place of treatment.
“It’s vital that care services and local councils are responsive when it comes to care in the home, including housing adaptations, as this has a massive impact on the quality of life for those living with the disease.”
Emily Holzhausen, director of policy at Carers UK, said: “Coming out of hospital and getting the right care can be hugely stressful for families and the person needing care.
“Delays in putting in place care arrangements and support for families pile unnecessary pressure and worry on families. Our research published only this week found 72 per cent of carers were suffering mental health problems as a result of their caring role with major stress factors including getting enough sleep and financial worries.
“Increasingly research is showing that people with complex needs are struggling to find the right kinds of care either in the home or close to home, which is what they want – to stay close to family and friends. This lack of appropriate care close to home is a sign of an underfunded care system. It needs to be urgently tackled by the Government so that the aspirations that the health and care system is personalised become a reality. “There is a right to family life under the Human Rights Act which must be considered when putting care in place.” In March this year there were 154,600 occasions when a bed was occupied by a patient who was fit enough to leave hospital. Of these, 102,600 were in acute care wards.
As well as costing the NHS money, bed blocking increases the risk of infection for patients, leads to poor emotional health and a loss of independence and confidence.
Phillip Blond, director of thinktank ResPublica, said: “The way health and social care work together needs to improve dramatically.
“The bed blocking crisis in the NHS is only getting worse, clogging up wards and leaving newly arrived patients on trolleys in corridors.”
Buckinghamshire Healthcare NHS Trust did not respond to our request for comment last night.