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Social care: ‘Jo’s care will value £1.5k every week – the system is damaged’

Dr Jo Wilson

It was solely a yr in the past that Boris Johnson stood up in Parliament and stated he was going to repair the long-term issues in social care. He introduced a brand new tax – to boost about £12bn a yr – can be spent on well being and social care prices solely. But the UK’s new prime minister, Liz Truss, has already scrapped the plan. Families, carers and care suppliers have been left asking the place the funding will now come from to repair a system, which they are saying is damaged.

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“It’s devastatingly hard to watch the woman that you love starting to disappear from your life, starting to fade away,” says Bill Wilson. “After nearly 47 years together, Jo was leaving me and it was like, ‘I don’t want you to leave me. I need you here with me’.”

Dr Jo Wilson was a high-flying international executive before she was diagnosed with dementia two years ago, aged 66. Bill insists he’s her husband, not her carer. But he now sees to Jo’s every need. Jo now walks around their home, in Newcastle, humming, confused, and talking to her “mam”, who died years in the past.

Bill has had to find fight and persistence to navigate the world of dementia care. “It took me two years to get a care bundle in place for Jo,” he explains. “And I solely obtained that as a result of Jo had a collapse at home and was taken into hospital.”

Even after it was confirmed Jo could have carers come to their home to help, Bill found the variety of staff, unreliable time keeping, and a lack of understanding of dementia, left him questioning whether it was worth it. “If I used to be to say to you it was like lighting a cigarette with a £50 be aware day by day, which may offer you some type of thought about how I really feel about that care bundle”. He’s now completely exhausted, and annoyed.

Weddings, household, holidays

Bill is regularly left to get Jo up in the morning, or to put her to bed at night. It involves a huge amount of time, patience and cajoling. Just getting her into her pyjamas can take over half an hour. While Bill takes off her shoes, Jo tries to put them back on. When Bill is looking for the hairbrush, Jo is heading downstairs saying she wants to go home.

All the time Bill is desperately looking for a hint of the wife he remembers. “It’s worse than powerful,” he says. “It’s horrendous. You’re soul-searching each single day, you are on the lookout for this slightest crumb of positivity you can dangle on to by your fingernails.”

Their home is surrounded by memories of their lives before Jo’s dementia diagnosis. Photographs of their wedding, family and holidays. They thought they would have had their retirement to travel, to go to the theatre, and have their niece and nephew over to stay. Now Bill walks around the house with keys round his neck, fearing Jo might wander out of the front door or get into the cupboard with the cleaning products in.

A place in a care home is the only alternative. That would be a big move for Bill, both emotionally and financially. “I’ve appeared into residential care”, he says, “as a result of I do know that it should occur, regardless that I can sit right here and say ‘I’m not letting it occur’, I do know that it’s going to.”

He says residential care for Jo would cost £1,500 a week. Because Bill and Jo own their own house, they would have to pay a lot of it themselves. Jo’s care would take an eye-watering amount of their savings and pension, although Bill would not be forced to sell their home. Once all savings had been spent on residential care, the council would then fund the place in the care home. If Bill were to move or die, the council could claim the cost of Jo’s ongoing care from the value of the couple’s house.

For those who go into residential care and don’t have a dependent or partner at home, care has to be paid for using the person’s assets, which can mean selling the house.

Bill describes one of his biggest frustrations as “the large disparity between being sick, which is treatable by the NHS, and having the sickness of dementia, which is native authority care”. “Why?” he says. “I do not perceive. Because Jo has dementia, nothing is free, we have now to pay for all the pieces”.

Even when Bill is prepared to pay, to have a break from the 24/7 responsibilities, he feels forgotten. “I phoned 42 care properties to search for a respite mattress for Jo and did not get one which was ready to to supply respite care.”

“The social care system – everybody is aware of it is damaged.”

Bill And His Wife Dr Jo Wilson

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Professor Martin Green, chief executive of Care England, says without a complete restructure of the social care system “1000’s, if not tens of millions, will likely be left with out assist, and the NHS will likely be on its knees”. It is a warning heeded by others.

The government says it launched a 10-year plan on adult social care last year and is investing £5.4bn over three years. But there’s a lack of confidence that social care services will get help to those who need it.

A new poll by Ipsos Mori for BBC News, suggests more than 70% of those over 55 are not confident that social care services will provide care to those in need. More than half of responses cited staff shortages and limited public funding as their main concerns.

Care providers say it’s these issues that are putting them under extreme pressure. “We know at the moment that three in 5 individuals with dementia don’t get the assist that they want as soon as they’ve that analysis. And that results in disaster in care”, says Fiona Carragher, director of policy at the Alzheimer’s Society.

The government has promised funding to recruit more care workers from abroad and £500m to help local authorities provide care packages this winter for those leaving hospital.

Changes, to help people cover their personal care costs, are due to come into effect next October. They include a more generous means-test and a lifetime cap on care costs of £86,000.

But the care sector is calling on the government to explain how it will pay for social care after ministers scrapped plans for the National Insurance levy, which was earmarked to pay for the social care cap. Yesterday, England’s county councils urged the government to delay its social care reforms, warning of serious staffing and financial pressures.

Until details become clearer, the 900,000 people living with dementia will have to wait. Bill says he is determined to value his days with his “primary woman.” “We all know there isn’t any completely happy ending,” he adds. “There’s just one consequence. But we will benefit from the time we have now collectively till that consequence comes.”

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