‘Please don’t put me in an old people’s home… I’m only 30’: How 15,000 disabled patients are being housed in geriatric care facilities as there are no other options available
- One in seven young disabled people have been placed in old people’s homes
- A shortage of neurological rehabilitation beds has been blamed on the crisis
- People win their 40s and 50s are now living with those in their 80s and 90s
- Campaigners fear this will have an impact on their ongoing mental health
One slip was enough to transform Danny Gallagher’s life for ever. The holiday park manager from Preston was at work when he lost his footing on a broken step.
It was a freak accident of the kind that befalls many of us from time to time, but on this occasion there were terrible consequences. Danny, 58, hit his head on the concrete floor, leaving him with a fractured skull and swelling on the brain.
In a coma for two days, his devastated family feared the worst – and when he did open his eyes again it was quickly clear that the damage inflicted was catastrophic. Paralysed and unable to speak, he was in hospital for 15 months before his doctors felt able to discharge him.
Danny Gallagher, 58, pictured with his daughter Gemma, slipped over on a broken step and was left paralysed. Instead of being transferred to a specialist neurological rehabilitation unit, he was sent to an old people’s home
‘He couldn’t talk, and was only able to move his left hand, but we know Dad was still in there,’ recalls his daughter Gemma Roberts, 36. ‘He recognised us and responded to us, and communicated with sign language and also with his expressions. When we visited him in hospital, he’d smile and wave his hand when we came into the room. But towards the end of his time there, he did seem frustrated and he was ready to move on.
‘He was on a four-bed ward, and the other patients would stay for a few months, then leave. Dad would bang his hand on the bed and point to the door, indicating to us that he wanted to leave too.’
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Given his age and the nature of his injuries, you might assume that Danny would be transferred to a specialist neurological rehabilitation unit. Instead, he was sent to an old-age care home.
Danny was left for hours on end with nothing to do but sit at the window and stare at the traffic, and his family felt he had been abandoned. The change in Danny once he was put in the home was dramatic.
Gemma says: ‘He needed specialist rehab to help him walk, talk and function again. But the staff did the bare minimum, feeding him. We even discovered that he wasn’t being bathed but was just being given bed baths.
‘We’d ask him how his day was and he’d just shrug. He didn’t smile any more, and there was sadness in his eyes. Sometimes he would cry and make an awful high-pitched screaming noise. It was incredibly distressing.’
Shockingly, Danny is far from alone: a damning new report, given exclusively to The Mail on Sunday, reveals that more than 15,000 people in England with disabling brain injuries and nerve conditions, including motor neurone disease, MS, Parkinson’s disease and Huntington’s disease, are languishing in old people’s nursing homes.
Some, who are only in their 20s and 30s, have been ‘left to rot’ without the specialist care that could give them a decent quality of life – and even a chance of recovery.
It is a situation that Sue Ryder, a charity that provides expert neurological care and rehabilitation, describes as ‘diabolical’.
Edith Solenne, 31, who has MS, was warned she faced being placed into an old people’s home by social services
The charity, which gathered the figures after submitting a Freedom of Information request to all local authorities in England, also discovered that only 49 out of 151 authorities were able to confirm that they routinely record whether the individuals they are providing services for have neurological conditions.
‘It’s simply not good enough,’ says Pamela Mackenzie, executive director for neurological services at Sue Ryder. ‘Old-age care homes simply can’t provide the specialist expertise for the treatment and management of neurological conditions, which are often really complex in nature and need to be monitored and delivered under the supervision of knowledgeable staff. Instead, some of these people are effectively being left to rot.
‘We’ve heard of appalling cases, such as a 42-year-old woman with MS in a wheelchair who lived in an old-age care home – she had not been given a bath for two years because the home didn’t have the facilities to hoist her in and out.
‘This issue should have been dealt with by the NHS in its new long-term plan but yet again the opportunity to address this fundamental gap in care has been missed. It’s a scandal.’
Danny Gallagher’s family – wife Karina and daughters Danielle and Gemma – know that only too well. Following Danny’s accident in February 2016, they had to engage in a nine-month battle to have him moved from the care home where he was taken after being discharged from hospital.
According to research conducted in 2017 by the MS Society, as many as one in seven younger disabled adults in residential care in England could be in homes designed for older people
The former local councillor had been highly active in his local community and was a doting grandfather to his six grandchildren. And while he was never likely to make a full recovery, tailored rehabilitation could have helped him learn to walk and talk again, to feed himself, and regain at least some semblance of his old life.
However, care shortages meant that he was sent instead to a local nursing home where, day after day, he was left alone in a chair.
‘It wasn’t a bad place – it was comfortable – but it was totally unsuitable for his needs,’ says Gemma. ‘There was nobody of Dad’s age, nothing to stimulate him. He’d be wheeled into a room with little old ladies having their hair set and nails done. He was never taken outside. He’d just sit by the window and wave at the traffic.
‘And, one by one, the people in the rooms next to him died and he saw them wheeled out. The result was that he stopped progressing in his recovery. It was incredibly distressing for us all and we felt so helpless.’
It’s a sentiment familiar to Sarah Vibert, chief executive of the Neurological Alliance, a coalition of 80 organisations working together to improve outcomes for people with neurological conditions, which she believes lack priority in the health and social care system.
The charity is contacted by any number of despairing families who believe their loved ones’ needs are being neglected in nursing homes.
‘Patients aren’t getting the physiotherapy they need, or only getting it sporadically, so their physical conditions deteriorate and they can’t remain active,’ she says. ‘In the worst cases, they are being left to wait for hours for someone to take them to the toilet or to get them a drink. This is a terrible loss of dignity.
‘We know of people in their 40s and 50s living alongside 80- and 90-year-olds, and this has a huge impact on their mental health. With nobody of their own age to relate to or interact with, people become lonely, isolated and depressed.’
People like young father Mark Cordiner, who was only 25 when a cycling accident left him with a devastating head injury.
Instead of being given the neurological rehabilitation he needed, he was offered the choice of either remaining in hospital indefinitely or being sent to live in the same old people’s home as his grandmother.
Or Tony Chisnall, who has the degenerative neurological condition Huntington’s disease, but was placed in a standard residential nursing home.
Without the specialist care and support required for his complex condition, his behaviour deteriorated to such an extent that his carers couldn’t cope and threatened to have him sectioned.
These two men are far from alone. According to research conducted in 2017 by the MS Society, as many as one in seven younger disabled adults in residential care in England could be in homes designed for older people.
‘It’s shocking to see how many people with neurological conditions find themselves in care homes never meant for them,’ says Genevieve Edwards, the charity’s director of external affairs.
‘These facilities are rarely equipped to meet their needs, and this can have a hugely detrimental impact on their quality of life and mental health. This is sadly yet another symptom of our failing social care system.’
Edith Solenne, 31, can testify to that. The accountant from Hitchin, Hertfordshire, was left ‘terrified’ when social services indicated she might have to go into an elderly care home.
Confined to a wheelchair with MS, she had until that point been able to live a relatively independent life thanks to the assistance of carers, who helped her get in and out of bed, shower and get dressed.
Then, in 2017, she received a letter from social services informing her that no more carers were available and that if she couldn’t be more flexible – for example, agreeing to go to bed at 6.30pm and to get up at 10am – the only option would be to go into a residential care home for the elderly.
She was given a 90-day deadline to respond.
‘I was terrified at the idea of having to live in an old people’s home,’ she recalls. ‘Even though I am disabled, I still have a job, a mortgage, a social life. I was only 30. But there was nothing else on offer, no safety net.’
The resulting stress led to her condition deteriorating.
‘I couldn’t see a way out,’ she says. ‘In the end I went to the MS Society and the media and, thanks to media pressure, social services agreed to go find a new care agency – one they didn’t have a contract with – who could come to my home. But I worry it could happen again, and the problem is much bigger than me.’
There is no question of that. The Neurological Alliance’s Sarah Vibert points out that over the past five years, there has been a 21 per cent increase in emergency admissions to hospital linked to a neurological condition.
‘The number of people living with such conditions is continuing to rise and this is already having a considerable impact on services,’ she says.
Campaigners now are urging the Government to end the practice of placing people with neurological conditions in elderly care homes.
Danny’s story, at least, has a happy ending: in January 2018, he was accepted at a Sue Ryder Neurological Care Centre in Lancashire and he has gone from strength to strength.
‘Within a few months of getting proper rehab, his speech started to come back and he was walking with a frame,’ says Gemma.
‘Every time we see Dad now he is able to do something new, such as to speak more clearly, stand, feed himself or move a few more steps with a walking frame.
‘My sister and I both have three young children and living here has meant that Dad can be a grandad again.’
How the right care can transform lives
Neurological conditions affect the brain or nervous system, and therefore movement, communication, behaviour and mental health.
Some, including cerebral palsy, are present from birth. Others, such as multiple sclerosis (MS), motor neurone disease and Parkinson’s, develop at any stage in life. They can be caused by a head injury or stroke, or an illness such as a tumour of the brain or spine.
They are often life-changing, causing long-term disability and can severely affect people’s ability to live independently.
Some improve over time with the right care but others may get worse.
People with neurological conditions often have complex needs. This can include long-term residential care, day, community and home care, and respite and rehabilitation services provided by nurses, physiotherapists, speech and language therapists and healthcare assistants.
By offering the right care and rehabilitation, neurological care can support people with a brain injury to regain their skills and independence. For people with a neurological condition that may get worse over time, specialist care can help with everything from easing physical symptoms, to coming to terms with their feelings and providing highly skilled residential care, including end-of-life care when the time comes.
To find out what neurological care and support is available near you, visit sueryder.org.
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