‘I sit and cry every day’: How the care system is failing those in need
Given what many families face, the need for reform is urgent, writes Jane Dalton
The social care system is a lifeline for hundreds of thousands of sick, elderly and disabled people and their families, and the NHS relies on it to be able to admit patients to hospital. But it’s on its knees. The warnings from patients, families, charities and council chiefs have been coming thick and fast, flashing red alerts.
Services in England are so overstretched that people are left struggling without vital support to carry out everyday tasks in their own homes, and lives are being blighted.
Now The Independent can reveal some of the effects the crisis is having including:
- A wife caring for her husband 24 hours a day had to cancel planned surgery for her kidney stones because she says she has no support
- A husband caring for his wife with MS and dementia said he was forced to call 999 because no home carers were available
- A Parkinson’s disease patient terrified of falling is at the centre of a wrangle over funding for a care home place near his family
The causes of the problems in adult social care are well known: funding failing to keep pace with growing need; low pay – often causing low morale; a post-Brexit staff exodus, and a pandemic that further shrank the workforce.
According to Cathie Williams, joint chief executive of the Association of Directors of Social Services, the crisis has been in the making for many years but is now the worst it has ever been. “Unmet, under-met and wrongly met need is growing, unpaid carers have taken on more and more responsibilities and the workforce and carer crises have both worsened. It’s having a devastating impact for people who need support,” she says.
“Some people are only getting care at the absolute minimum. One young, disabled adult told me, ‘My care keeps me alive but doesn’t enable me to live’.”
The entire creaking system, she says, is letting down those in need, letting down staff and unpaid carers and letting down taxpayers.
In August last year, Helen Phipps Watson had a meeting with social workers, district nurses, her local fire service, an occupational therapist, an adult social care manager and council legal experts about caring for her husband, Ian, who has vascular dementia, is almost blind and is at risk of choking following a stroke.
But more than six months on, no action has been taken, she says, and she is left caring alone without a single night when she is not up with her husband up to 10 times helping him.
Helen, who gave up a well-paid career as a psychologist to become an unpaid carer, says: “Not one single agreed action from the multidisciplinary meeting has been carried out. I assume this is a result of the pressures social services are under and facing.
“The fact that nothing has been actioned from the meeting, involving many and much work, is detrimental to the very things that were discussed and planned as best interest for my husband’s care.”
Helen has even been forced to postpone vital surgery for her own health because her husband cannot manage without her at his side.
“It was said at the meeting that I must have access to respite, the GP adding that it must be regular, to meet my health needs: I have recurring kidney stones requiring emergency hospital treatment or operations, and for my mental wellbeing because nobody should be expected to be housebound for as long as I have been as a result of caring for another.
“It was decided no other place could provide such excellent care for Ian as I was providing.
“I haven’t had a respite care break for five or more years, of 24/7 caring – and until late 2020 I was caring for both my husband and my dad, until he passed.”
The latest report by the King’s Fund health charity highlights how the need for care is rising. Numbers of people requesting support for the first time have been going up for eight years, particularly working-age adults. Among over-65s new requests are a little higher now but the trend is less clear-cut.
Meanwhile, a record staff vacancy rate has created more pressure on remaining workers. There were 165,000 vacant posts in social care last year – an increase of 50 per cent and the highest rate on record.
“I fully appreciate social services have a stressful job – many have left and cuts to their funding keep happening, year on year,” Helen says. “But unpaid caring is also stressful and without the luxury of going home at the end of the day, time off and annual leave.”
Norman Phillips, 71, who looks after his wife Ros, who has multiple sclerosis and dementia, says he feels the help she receives from visiting carers is not at the level it was.
“Social services are losing staff to the local NHS hospital where they get paid £8,000 more.
“As carers they put so much kindness and effort into the job but one lady left, saying, ‘I can’t do the job I want to – I can’t look after these people. If I can’t do my job properly I’m not staying. There’s not time.’
“They’re always under pressure to move to the next call. If they’ve got a half-hour job, the actual care might be only take 15 minutes before they have to leave. But the extra 15 minutes is what makes people comfortable.
“This year alone, five of my wife’s regular carers have left”.
Cathie Williams is appalled by carers’ pay levels. “It is unconscionable that we continue to expect them to work for less than they would get flipping burgers or stacking shelves,” she says.
Largely because of the staff and funding shortages, the number of people actually receiving long-term care, especially those over 65, has fallen gradually over the past eight years, despite rising demand, the King’s Fund suggests. As a result, levels of unpaid care are rising, according to a new report by the Nuffield Trust. Between 2011 and 2021, an extra 100,000 people provided unpaid care for 50 or more hours a week, it says, with a higher concentration in poorer areas.
Have you been affected by this story? If so, email jane.dalton@independent.co.uk
Age UK says that between 2016-17 and 2021-22, the proportion of older people receiving long-term support from their local authority dropped by 13.5 per cent.
And last month the charity issued its starkest warning yet about an overstretched system that is “struggling and sometimes failing to cope with the needs of older people”.
More than 1.6 million older people have basic support needs that are not being fully addressed, such as requiring help to get out of bed, get dressed or wash. This amounts to 15 per cent of people in their seventies, and 21 per cent of people in their 80s, Age UK calculates.
Its latest report said: “The bottom line is simply that far too many older people still do not receive the coordinated, wrap-around support at home that they need. And the problem is becoming more pressing by the day.”
It says supporting people at home is the foundation of a sustainable system – but “at the moment, these foundations are often broken or simply not there at all”.
But the problem also goes deeper than staffing and resources. It’s also about social care being detached from healthcare at an early stage, then placing more burdens on the NHS at later stages, according to those who work in the system.
“From what I see, I despair of the lack of coordination between the NHS and social services,” says Norman.
At the end of March, MPs on the Commons Health and Social Care Committee published a report on “integrated care systems” aimed at delivering joined-up health and care services.
But while the outcome of a government review is awaited, the waiting list in social care in England is significant and growing all the time. The Association of Directors of Adult Social Services estimated that in August, 246,000 people were waiting for assessments of their needs, an increase from 204,000 in November 2021.
Care homes, too, are hit by both the staffing and funding shortfalls.The Independent has learnt of one care home built for 80 residents that has only a quarter of that number because of a shortage of staff.
Ron Sheppard, who has Parkinson’s disease and chronic obstructive pulmonary disease, struggles with everyday tasks, but says he has been told he can’t go into a care home near his family because his current local authority does not have the funding.
“I can’t cope alone,” says Sheppard, 74. “I’m too scared to even get in the shower without help because I’m at risk of having falls at home. My carers say I shouldn’t be living alone.
“My stress and depression have worsened and my health conditions are causing me pain but I’m stuck because social services say they don’t have the money.
“I just sit and cry now every day. I want to spend my last years near my family.”
Sheppard says that during a hospital stay he was prevented from going home for weeks because no care plan was drawn up, so he had to badger staff to prepare one. And although he has carers now, he is desperate to move into a care home.
“I have had four days now where my legs have given way on me. I am terrified about having to call an ambulance and ending up back in hospital, where I caught Covid.”
He says he saw others in the hospital also waiting for care plans, putting extra pressure on wards and medical staff.
It’s not clear how much of the care crisis can be blamed on Covid. Even before the pandemic, resources were stretched. A 2018 survey by Unison found 28 per cent of staff were often too overworked to give people a wash; nearly one in five (19 per cent) said they were too rushed to take people to the toilet; and a similar proportion (21 per cent) did not have time to prepare food or drinks for those they supported.
Over the years governments have repeatedly promised reform, the latest involving a white paper in December 2021 that set out a £1.7bn 10-year plan to improve care.
It also promised reform of how older people fund their care, but, like all earlier pledges, the plans appear to have been postponed, and chancellor Jeremy Hunt – himself a former health secretary – made no mention of care in his Budget.
Then this week the government halved the funding it had promised for the social care workforce, from £500m to £250m, to the anger of social and ageing charities.
The system of paying for care, too, has badly needed a shake-up for decades. Like many people whose needs change as they age, the Phillipses were forced to remortgage their home and later sell it to fund their care, and Norman finally gave up his job to look after his wife.
Williams says: “At its worst, some people are being bundled out of hospitals into care homes, and for some that means an unwitting permanent move of home, if they didn’t want to go into residential care.
“And when they get there, if there aren’t the resources to provide wraparound rehabilitation support, they will deteriorate as much as they would have done in hospital. That’s terrible for them but also poor value for money as it locks up public spending for a long time or, if they have to themselves pay, that person gets a big bill for something they didn’t want.”
Any national plan must allow for better long-term decisions that enable people to stay in their homes, she argues – which must mean increased funding, appropriate housing, prevention, recovery and reablement, better care workers’ pay and support for unpaid carers.
“The three leading health and care think tanks have said that an additional £7.6bn was needed for this in 2022-23, rising to £9bn in 2024-25.
“We also need a national workforce plan for adult social care, like the one promised for the NHS.”
The Independent asked the Department for Health and Social Care to comment but at the time of publication had received no response.
For people such as Helen, physically, financially and emotionally exhausted, the need for reform is urgent.
“Ian and I do not have heating on because we cannot afford it: our property has not had heating on at all throughout this winter.
“This and the cuts to social care are crippling to some of the most forgotten in society.
“Unpaid carers save the government billions every year and yet we cannot afford to live and nor are we entitled to a single day off.”
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