An excerpt from Patients First: How to Save the NHS by Lord Turnberg.
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The whole edifice of the NHS heavily depends on how we care for people in the community. Social care – provided in care homes and at home – overlaps with community care, including district nursing and children’s services. But, the two most significant factors that have limited their effectiveness have been the lack of sufficient funding and completely disaffected care staff.
The Care Quality Commission Report of October 2023 – ‘The state of health care and adult social care in England’ – was damning about all services.[i] On social care, the authors wrote, somewhat mildly, ‘Insufficient capacity in adult social care is continuing to contribute to delays in discharging people from hospital. Ongoing staffing and financial pressures in residential and community services are having an impact on the quality of people’s care, with some at greater risk of not receiving the care they need.’[ii]
Community and social care provide an unhappy picture of unmet demand and high unfilled staff numbers.
Demand
The figures are striking. Social care departments receive almost two million requests a year for help. (1.98 million in 2021/22, which equates to 5,420 requests every day of the year.[iii])
Of these, about 30% are from disabled people below the age of 65, and the remainder from the more elderly. Some four out of five requests come from the community and not from hospitals. Despite only one in five coming from hospitals, it is there where all the publicity about inadequate services arises as they impinge directly on failures in the NHS. But it is the hidden majority that suffers the most.[iv] It has been calculated that some 1.5 million people cannot get the care and support they need.[v], [vi]
The history of the neglect of social care goes back a long way. The National Health Insurance Act of 1911 was an early attempt to support the elderly and infirm, but it was limited to the very poor. Before the start of the NHS in 1948, care for the elderly, the disabled, and the mentally ill, was hit and miss. But there were fewer elderly people then. Life expectancy was much shorter in 1948, at about 66 for men and 70 for women and – on average – we now live 13 years longer. The treatment of patients with mental illness was radically different when large numbers were incarcerated in huge mental hospitals. Many elderly and infirm were housed in long-stay geriatric wards and others in local authority, so-called ‘Part III’ accommodation. At the same time, a rather larger proportion was cared for at home at a time when a more cohesive and supportive family structure was the norm. Thus, although care in the community was not great, the pressures were much less. Nevertheless, and despite a lower demand, social and community care always seemed neglected as the poor relations of the NHS.
The National Health Service Act of 1948 saw local authorities being given responsibility for social care and care in the community in place of a range of charities and voluntary organisations. In the enthusiasm with which the new NHS was introduced, barely a thought was given to integrating it with social care. The NHS had enough to do with taking over 2,688 beds, 125,000 nurses and 5,000 specialist doctors. GPs were given a separate contract, and it was left to local authorities to deal with care in the community.
There was much to be done. The closing of large mental institutions and long-stay hospitals with the distribution of most residents to their homes and into smaller community care facilities was a huge and important task. ‘Institutional’ care was replaced by ‘community’ care. Undoubtedly, the residents benefitted, but concerns were immediately raised about whether the community was ready to receive or care for them. The availability of funds became the sticking point and has remained so.
Funding
It was soon recognised that neither the NHS nor local authorities were adequately funded as costs escalated way beyond original assumptions. It is the sad case that since that time, neither service has been seen as affordable. And worse has followed in social care as local authority funding has deteriorated. It has fallen by 55% as demands have increased. In effect this has caused a spending power reduction of 29%.[vii]
Of local authority budgets, about half was spent on social care in 2010; in 2023, it was more like two-thirds, spent largely on the salaries of 1.6 million care staff.
Social care expenditure had remained fairly constant at around £17 to £18 billion per annum or about 0.9% of GDP. It rose temporarily in the Covid era to £22 billion in 2021-22, or 1.0% of GDP (2.1% of public expenditure).
At the same time, inflation has raised prices and demand has risen from an increasing number of vulnerable elderly. Requests for support are rising, too. Between 2015/16 and 2021/22, requests rose by 9%, from 1.81 to 1.98 million per annum.[viii]
Although local authorities fund care for residents, they manage only about 4% of care homes themselves. And funding of care is the subject of much-agonised debate as the proportion to be paid by the residents themselves is a constant source of uncertainty.
Care homes are largely privately owned and run; some are small and independent, and others are part of large multi-site operations.
Needs of the Elderly
Demography is against social care provision. We are living longer, despite the recent flattening of life expectancy tables, and we are accumulating more disabilities that make us more needful of support.
In 2023, there were 11 million people aged over 65. A woman of 65 could expect to live 21 more years, while a man could expect 18.5 more years.[ix]
Of those over 65 years of age, 3.3 million live alone, according to Age UK,[x] and it is recognised that loneliness is strongly associated with an increased mortality rate. They are vulnerable to falls, sleep deprivation, infections and depression, each of which hastens mortality in the elderly and infirm. Serious falls are three times more common in people in care homes than in their own homes, largely because they are likely to be an even more disabled group.
The figures hide the wide disparities in life expectancy between the most deprived 10% of the population and the least deprived 10%. A man in the South-East of England can expect to live until the age of 80.6 while a man in the North-East until just 77.6 years of age.[xi]
A similar discrepancy is seen in women and the gap is even more stark when comparing the length of life lived free of disability. Disability-free life expectancy is clearly shorter in the North-East than in the South-East.[xii] And the gradient of deprivation is getting steeper, while the burden of dementia grows heavier each year. Yet, local authority funding for social care – instead of responding to these differences by being higher in the most deprived areas – is, in fact, lower. The relationship between tax recovered by councils and average house price clearly demonstrates how deprived Northern areas are much worse off than affluent South-Eastern areas.[xiii]
Younger Persons’ Needs
Most often, it is patients living alone with a disability (that makes it difficult for them to look after themselves) that pose a problem. It is not only elderly frail people but many younger disabled people of working age who also need help to enable them to get on with their lives. Bathing, dressing and preparing food may be beyond their abilities to manage themselves. They may need help with all of these, plus shopping and merely getting out of the house at times. Some are mentally disabled, while others have very complex medical needs. Above all, many are intensely lonely and need someone sympathetic with whom they can talk. Simple companionship and morale-boosting are part of the package of need. Then there are the particular and largely unmet needs of those with mental illness. Of these, patients with dementia pose a special problem. And their numbers are growing. With almost a million dementia sufferers in 2022, the numbers are set to rise over the next few years unless some treatment or, optimistically, a cure can be discovered.[xiv]
But how do local authorities fulfil responsibilities if they are starved of funds? Since 2022, the Care Quality Commission (CQC) has had a duty to ensure that high-quality care homes and carers are available to provide the full service. They, too, are likely to be hamstrung by the patchy distribution of privately owned care homes and by some uncertainty about what is to be included in a full package of care.
Care at Home
It is the case that most people in need are cared for at home by members of their family or close friends. Calculations by Age UK suggest that there are about five million such unpaid carers in the community.[xv] Other calculations suggest that there may be twice that number of unpaid home carers, saving the exchequer some £162 billion per annum. That equates to about £445 million per day.
The fact that home carers have to make huge sacrifices – including the loss of jobs and earned income as well as personal freedom – is obvious, yet very few receive any financial support. Someone caring full-time at home for 35 hours a week can, if they are persistent, receive up to £76.75 per week. That’s £2.20 per hour and only if their state pension is less than that.[xvi] For those with a severe enough disability, and who need care at home, carers can also receive an ‘Attendance Allowance’ of up to £101.75 per week if the person being cared-for needs assistance 24 hours a day. If they only need care during the day or during the night, they might receive the aforementioned £76.75 per week.[xvii]
Emma Duncan, writing in The Times,[xviii] describes the tortuous and prolonged process she needed, including completing a 30-page form, to gain an inadequate Attendance Allowance for her mother-in-law. Little wonder that only a small minority of home carers can manage the bureaucracy to gain any support.
The use of family and friends carers saves considerable costs to the taxpayer, but only at the expense of large numbers of loyal and compassionate people.
Slowly but surely, other types of support for care at home have been eroded. Home help, meals on wheels, district nurses and GP visits have all been radically pruned as staff numbers have declined. Community nurse numbers have fallen by 47% since 2009 and local authority-funded health visitor numbers by 30% during the same time.[xix], [xx] The smaller number of health visitors are distracted by a growing demand for child protection services, a particularly stressful responsibility.
Bureaucracy
Applicants for a care home place are faced with a daunting and confusing bureaucracy as they attempt to grapple with the system. Many do not know what support may be available to them and, too often, assume that they will not be entitled to anything.
Not surprisingly, applicants often face delays and obstruction. In March 2023, there were 434,243 people waiting for an assessment of their needs.[xxi] A third of those had waited for at least six months, and waiting lists are on the rise.
Others are caught in a service with poor communication, including, for example, between hospital and community services and between a myriad of disjointed care homes with multiple different owners. And general practitioners are too often outside the loop and not consulted by those assessing patients’ needs. The criteria adopted for ‘need’ for social care are laid out in government regulations, but they are interpreted by local authorities who may or may not take account of any information from the applicants’ GPs. No data on how the system is working are currently collected centrally, but one is left to assume it is fair.
If an applicant’s need is approved, they then have to go through an assessment of whether or not they can afford to pay. This, again, involves much form-filling, and is often too difficult even for those in full possession of their senses. Their ability to pay is set at a level that severely limits access, and means-tested funding is a minefield. Anyone with assets worth more than £23,250 has to pay for all their care. If they own a home, and there can be few homes worth less than that, they pay for all their care.
That is not the end of it because if their assets are worth less than £23,250 but more than £14,250, they have to pay £1 per week for every £250 between the two limits. I hope that is clear! Governments since 2011 have found that the potential costs to the exchequer of social care were too high and hence unaffordable for the state. The Director of Age UK, Caroline Abraham, has written (in sorrow rather than anger) that anyone in need of care in the community right now struggles even more than in 2011. She wrote that ‘budgets have failed to keep pace’ and that ‘…the quality of care on offer is often pretty patchy … Social Care was at the tipping point and it is now clear that provision has broken down in some parts of the country.’[xxii]
So far as the NHS element of funding of social care is concerned, only some conditions will meet the criteria for help. For example, if a person has a cancer, then the NHS will cover the cost of community care, but not if someone has dementia or mental illness.
The limits placed on means testing have not been updated since 2010 and have not kept up with inflation or any other cost-of-living indicator. Even assets of less than £14,250 leave an applicant with the need to pay ‘what they can afford from income only’, whatever that means. The net result is that one in ten people over the age of 65 in care may be left with a bill of over £100,000 over the time they are in care.
Dilnot and Affordability
The Dilnot Report of 2011[xxiii] proposed a way to ameliorate the problem. Dilnot’s suggestion was that the maximum anyone should be liable to pay should be set at between £25,000 and £50,000 with a recommendation of £35,000.
Furthermore, the threshold beyond which self-payment should begin should be raised from £23,250 to £100,000. The cap on care costs prescribed by Dilnot were put into statute but never activated.
Now, 13 years on, we are still waiting for these recommendations to be put into effect. It’s not that we have been short of many proposals for change; as we will see, it is just that none has borne fruit.
Local authority funding is made up of a government grant, local taxation including business rates income, and a modest grant from the NHS. Business rates incomes are lowest in the most deprived parts of the country where there are fewer large businesses. The remainder of care costs in care homes are covered by fees from individuals who self-pay.
This system is widely regarded as being inadequate. Numerous but unsuccessful efforts have been made by governments, not only in the UK, to try to repair it. Assessments of whether the costs of care in the community could be shared between clients and the state have often been made and found wanting in one way or another. It has always been the case that means testing has meant that anyone who could afford it paid for the total cost themselves. When Theresa May was Prime Minister in 2018, she proposed that costs should be shared and individuals who could afford it should pay for their residency and keep, either from their savings or by selling or renting their homes, while the state should cover their care costs. It was very unpopular, labelled as a ‘dementia tax’ and was widely held to be responsible for her loss of the premiership.
It was not the first time a scheme of this sort was suggested. In 1997, the then-new Labour Health Minister, Frank Dobson, decided to try to tackle this festering sore. He set up a Royal Commission under the chairmanship of Sir Stewart Sutherland (later Lord Sutherland) to examine the issue.[xxiv] The report of the Commission, in 1999, recommended the splitting of responsibility for funding between the individual resident (who would pay for their accommodation) and the state (local authority) that would pay for care. The former was to be means-tested, and the latter free. But, two members of the Commission, Joel Joffe and David Lipsey (both later ennobled), felt that they could not support the proposal that the care provision segment should be free. They argued that it would rapidly become unaffordable and that it, too, should be means-tested, albeit with certain protections against people being forced to sell their homes.
Despite the plea for urgent action in the report, the minority view undoubtedly undermined its proposals. Perhaps more important was the fact that Frank Dobson, a strong supporter of the report, retired from the Department of Health to challenge for Mayor of London. None of his Labour successors in Health were interested. Part of the problem arose from the difficulty in discriminating between what were to be defined as care costs and what were residency and food costs.
There was one other potentially valuable proposal in that 1999 Royal Commission report that was for a new standing body – a National Care Commission – to bring together the various strands of long-term care under a single stewardship. Sadly, this was lost, too, and has not yet been resurrected.
For real-world solutions to these problems, and to read more about Social Care and Care in the Community (plus chapters on Primary Care, Hospital Care, Mental Health Services and much more), take a look at:
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[i] The State of Health Care and Adult Social Care in England 2022/23, CQC Report, 20 October 2023, www.cqc.org.uk/publications/major-report/state-care/2022-2023
[ii] The State of Health Care and Adult Social Care in England 2022/23, CQC Report, 20 October 2023, www.cqc.org.uk/publications/major-report/state-care/2022-2023
[iii] Public Expenditure Statistical Analysis, HM Treasury, 2022.
[iv] Boccarini, G., Stevenson, G., Sameen, H., & Shebavnekar, N., Adult Social Care Funding Pressures: Estimated Costs to Meet Growing Demand and Improve Services in England, The Health Foundation, 25 September 2023.
[v] A “Gloriously Ordinary Life”; Spotlight on Adult Social Care, House of Lords, Adult Social Care Committee, Report of Session 2022-23, 8 December 2022.
[vi] Myers, R., District Nursing – It’s Not Just an Injection, King’s Fund Blog, 13 September 2016.
[vii] McKellar, L., Report: Association of Directors of Adult Social Services, Spring Survey 2021.
[viii] Ombudsman Stats Show Stark Reality of Life in England in 2023, Local Government and Social Care Ombudsman, July 2023.
[ix] National Life Table – Life Expectancy in the UK, Office for National Statistics, 2020-2022.
[x] Reeves, C., Islam, A., & Gentry, T., The State of Health and Care of Older People in England 2023, Age UK, July 2023.
[xi] Inequalities in Age and Standardised Mortality Rates, The Health Foundation, 6 January 2022.
[xii] Inequalities in Age and Standardised Mortality Rates, The Health Foundation, 6 January 2022.
[xiii] The New Statesman, Pg 24, 1 September 2023.
[xiv] Local Dementia Statistics, Alzheimer’s Society, 2022.
[xv] Carers Allowance, Benefits 2023-24, Age UK, 5 October 2023.
[xvi] Carers Allowance, Benefits 2023-24, Age UK, 5 October 2023.
[xvii] Carers Allowance, Benefits 2023-24, Age UK, 5 October 2023.
[xviii] Social Care: The Time Bomb No Political Party Wants to Touch, The Times, 28 July 2023.
[xix] Rolewicz, L., Palmer, B., & Lobont, C., The NHS Workforce in Numbers, Nuffield Trust, 7 February 2023.
[xx] Hunter, W., Health Visitor Shortages Leaving Primary Care ‘Overwhelmed’, Nursing in Practice, 7 June 2023.
[xxi] ADASS Spring Survey 2023, Final Report, Adult Social Services, 21 June 2023.
[xxii] Abrahams, C., Age UK Comment in Response to The Care Quality Commission (CQC) Annual Assessment of the State of Health and Adult Social Care in England Looking at the Quality of Care Over the Past Year, Age UK, 20 October 2023.
[xxiii] Dilnot, A., Fairer Care Funding, The Report of the Commission on Funding of Care and Support, July 2011.
[xxiv] Sutherland, S., With Respect to Old Age: Long Term Care – Rights and Responsibilities, Royal Commission on Long Term Care, The Stationery Office, 1999.