At just 29 years old, Nina Thair was given the devastating diagnosis of multiple sclerosis.
The condition affecting the brain and spinal cord quickly began to rob her of the ability to walk – but she refused to let it hold her back.
Thanks to walking aids, and plenty of determination, she triumphed in her career – becoming an assistant head teacher at a secondary school and enjoying far-flung adventures to Africa and Japan.
‘There’s no getting round it – having MS isn’t great but I wasn’t going to sit in a darkened room crying,’ says Nina, now 46.
Nina Thair was given the devastating diagnosis of multiple sclerosis at 29. She went on to have a thriving career in teaching and toured the world – but she’s been left to rot in a nursing home
‘The world is out there and, in a way, being diagnosed just gave me a new determination to make the most of life.’
When her condition took a turn for the worse 18 months ago, Nina needed hospital treatment and became completely reliant on her wheelchair. Her medical team recommended residential care, but with no units catering for the needs of younger disabled people in her area, she was put in an old folk’s home
It is impossible not to admire her spirit. Yet today, while the world is still out there, Nina is unable to make much of it. Her days are spent in mind-numbing boredom, confined to an 11ft by 10ft bedroom in a care home for the elderly. Most of her fellow residents are in their 80s and 90s and suffering from dementia.
When her condition took a turn for the worse 18 months ago, Nina needed hospital treatment – and became completely reliant on her wheelchair. Although she owns her own flat in Brighton, she was unable to return home. Steps leading to her property and narrow doorways meant she was unable to get in and out, no matter how much she wanted to – and the property could not be modified.
Her medical team recommended residential care. But with no units catering for the needs of younger disabled people in her area, Brighton and Hove social services claimed her ‘only option’ was a nursing home elsewhere in East Sussex, miles from friends and family.
Since moving there in March, the bulk of her £4,800 monthly bill has been paid by the council – but Nina has been told she must sell her flat in order to pay this back. Her one-bedroom period conversion is on the market at £220,000. Anyone assessed as having more than £23,250 in savings or assets must pay for their own care.
Because of her worsening symptoms, Nina has taken early retirement and now receives a small pension and £148 a week in disability allowances. ‘This, added up, doesn’t come close to covering the cost of the home,’ she says.
‘THEY SAY I’M NOT DISABLED ENOUGH’
At present, all disability – no matter the cause – falls under the remit of social services. There is no NHS funding for care, even in the case of a progressive condition such as the one Nina has.
Crushingly, if she had never worked, she might have been eligible for further help, including housing benefit. ‘Right now I feel like I’m being punished for having worked all my life,’ she adds.
‘I wanted to rent an accessible flat, but there were none that I could find within my budget in Brighton. At the start of this, I wasn’t sure I could afford a property suitable for me – I need a two-bed, which will cost about £300,000, as I also need 24-hour care.
‘I have about £70,000 equity in my property but I owe more than £30,000 in care bills and counting, so I won’t be able to get another mortgage. Once all the money from my flat has been burned through, then I might be allowed to apply for housing benefit. But then I’m going to be totally dependent on the state. And they’re the ones who have put me in a nursing home for people with dementia.’
Today, all of Nina’s belongings are either packed into her one narrow, wooden wardrobe, or displayed on the windowsill. Anything that didn’t fit within her four walls was either sold, given away or discarded. She rarely has visitors, but sometimes a carer will accompany her on the 20-minute bus ride into Brighton.
‘I appreciate it but this happens once to twice a week if I’m lucky,’ says Nina. ‘Most of the other people here have dementia, and there’s no one to talk to.
Since moving there in March, the bulk of her £4,800 monthly bill has been paid by the council – but Nina has been told she must sell her flat in order to pay this back
‘I get up and dress myself nicely, maybe watch something on Netflix to pass the time. I try to make an effort to carry on as normal, but it’s hard. I’ve been to Citizens Advice and the MS Society, but they have said there’s nothing else I can do. My MS nurse did look into special NHS funding for people with complex health needs that can’t be met by existing services. But because I can live in this old people’s home, I’m not eligible – basically, I can speak and get myself out of bed and into my chair, so I’m not disabled enough. Even my social worker seems to be at a loss, and just says how sorry she is.
‘Since I’ve been here, I’ve been put on antidepressants. I’m overcome with grief for everything I’ve lost in my life.’
THOUSANDS ARE IN THE SAME SITUATION
AS The Mail on Sunday revealed in March, Nina’s story is worryingly common. Data obtained by care charity Sue Ryder revealed that 15,000 Britons with brain injuries or conditions such as MS and Parkinson’s – some of them aged in their 30s – are languishing in old people’s nursing homes. Many have been ‘left to rot’ without vital specialist care that would give them a chance of recovery, say experts.
The charity warns that the figure could be the tip of the iceberg as more than 100 clinical commission groups, which oversee local healthcare funding, failed to respond to their requests for information.
Since this newspaper revealed the problem, dozens of new cases have come to light. Pamela McKenzie, executive director of neurological services at Sue Ryder, says: ‘More and more people are coming to us in crisis, having been in an old people’s home. They just aren’t equipped to provide appropriate care for these conditions.’
Sue Ryder is not the only charity dealing with the fallout of this desperate situation.
Sandra Woods, from the MS Society, says: ‘A few months ago I took a desperate call from a middle-aged man who was struggling with the lack of carers provided to help his wife, who is in her early 30s and has MS. She ended up going into an elderly care home because there were no carers available.’
Another patient, she says, was forced into a nursing home when her marriage broke down and there was no one to care for her.
Anyone assessed as having more than £23,250 in savings or assets must pay for their own care. Because of her worsening symptoms, Nina has taken early retirement and now receives a small pension and £148 a week in disability allowances
Last year, the Equality and Human Rights Commission published the outcome of a two-year inquiry into housing for disabled people. It said about 360,000 Britons with disabilities, including those with complex neurological conditions, have ‘unmet’ housing needs.
The reasons for this include a lack of adapted houses appropriate for wheelchair users, and misunderstanding of the specific needs of patients. With increasing demand for spaces at nursing homes, many patients are forced to ‘live’ for months on hospital wards.
Neurologist Professor Adrian Williams, at University Hospitals Birmingham, says: ‘I walk round our hospital wards and see people who have been here a long time because they can’t go anywhere.’
Both Sue Ryder and the Neurological Alliance – a coalition of 80 organisations – are concerned that the situation is putting thousands at risk of serious harm. Ms McKenzie says: ‘Staff at old people’s homes lack essential specialist expertise and equipment. One patient we knew, in her 40s, couldn’t have a bath for two years because staff didn’t have the right facilities to lower her in while keeping her upright.’
A DESPERATE NEED FOR MORE HOMES
Sue Ryder runs four residential homes across the UK, each with a specialist unit dedicated to people of all ages with neurological disorders – but there is an urgent need for more. The charity’s Aberdeen centre came to the rescue of Krystle O’Farrell. Krystle, 31, has Wolfram syndrome, a rare genetic disorder that causes diabetes, deafness, blindness and neurological problems such as reduced sensation in the limbs.
Six years ago, Krystle’s mother, Vicki, 55, and father Gavin, 59, struggled to cope with her ever-increasing needs and called on the NHS for support.
Its answer was a mental health ward in a local hospital, home to nine adults with severe psychiatric problems. Krystle stayed there for five-and-a-half years. Vicki says: ‘We were told our only other choice was an old people’s home 66 miles away in Dundee.’
Luckily, the family sought the help of Sue Ryder, which found Krystle a place closer to her family. The neurological centre provides specialist care for those with Huntington disease (a progressive brain disorder that causes uncontrolled movement), motor neurone disease, multiple sclerosis and Parkinson’s, as well as conditions resulting from a brain or spinal injury or stroke.
‘I knew it was the place for Krystle,’ says Vicki. ‘She has her life back and goes out for a coffee every day. Church members come in on Wednesdays and she gets to sing her heart out. She has her smile back.
‘The burden of worry has been lifted off my shoulders. I can be her mum again, not just her carer.’
Back in Nina’s home, where the sounds of distressed, dementia sufferers echo in the corridors, the future doesn’t look as rosy.
She says: ‘I’d give anything to have my own living room, and some peace and quiet. I might have another 20 or 30 years left, and the fact I might have to spend it here, in this room, just makes me angry. I can’t believe that this is what my life has become. It’s a nightmare.’
A Brighton and Hove Council spokesman said: ‘We are aware of Ms Thair’s situation. Her current accommodation is temporary. We’re sorry for the difficulties she is experiencing there. We are working with her to explore alternative options and solutions for her future accommodation.’
The Department of Health and Social Care said it expects councils to offer a ‘meaningful choice of suitable, high-quality services that meet people’s needs, regardless of their age and condition’.
