A new care covenant

“When all this is gone, what’s left is what matters most: the people you love – your family, your friends.” The Guardian’s Mike White tells me these were Jim Callaghan’s words, quoted by a member of his family at the memorial service for the former Prime Minister and his beloved wife Audrey.

I’m sure many people would agree. Even if we’re lucky enough to feel passionately about our work, our families are far more important. There’s increasing evidence to support this personal assumption that relationships matter hugely to our happiness and sense of well-being.

The longest running longitudinal study of human development in the US – the Grant Study – has found a powerful correlation between the warmth of a person’s relationships and their overall health and happiness, especially in old age. Yet public policy has so far paid precious little attention to the importance of relationships, particularly in debates about how we meet the challenges of our aging population.

Most of these focus on what’s happening to our existing care services: how they’re facing ever-increasing demands, struggling to cope, and in some cases providing appalling standards of care. All of which is true. But by starting with the services we’ve got – rather than the help and support people really want – we risk neglecting some of the very things that are most important to people as they get older: their relationships with their family, neighbours and friends.

The argument I want to make is that our growing care crisis is one of the biggest challenges we face as a society. This crisis means we have both a responsibility and opportunity to make radical changes to how we as a country care.

A responsibility – because families are suffering, services are struggling and the dire state of our economy means we cannot simply spend our way to a better future. But also an opportunity – because the care system we’ve got isn’t based on what older and disabled people and their families really want in the first place.

The government’s measures in tomorrow’s Queens speech won’t go anywhere near far enough in tackling the crisis in care.

A new right for carers to have their own needs assessed is welcome, but risks being meaningless if the actual support they want isn’t available because council and voluntary services are being cut to the bone. And whilst a £72,000 cap on care costs is a small step forward, it won’t provide adequate protection for people with low and middle incomes and wealth, and won’t even be reached by the first older person until towards the end of the next parliament. We need a far bigger and bolder response to meet the challenges of our aging population.

Making the big changes people want, and our public finances demand, will require fundamental reforms to public services and the role of the state. The old top-down approach – where the state does things to or for people – won’t work.

This isn’t just because the kinds of increases in public spending that Labour secured when we were last in Government simply won’t be possible for the foreseeable future. It’s because public services must change if they’re going to retain support in the long run.

Every week in my constituency surgery people tell me how frustrated and even angry they are about one public service or another: how they’ve been badly treated, fobbed off and passed between different departments, as if their views and concerns don’t matter.

A one nation approach to public services understands that an over bureaucratic state, as well as unrestrained markets, prevents people from leading the lives they want to live. It also understands that whilst people must have far greater say and more control, they also have a vital contribution to make: they are not simply consumers of services.

This is particularly true in care, where people’s own behaviour has such an impact on their health, and where the contribution families make to looking after their loved ones is so important. So we need an active and enabling state, that shares power and responsibility, helping people to help themselves – and one another too.

What do people want?

Our starting point must be with people’s hopes and aspirations for their lives as they get older.

The truth is most people don’t want to have to depend on the state or care services, if they can possibly help it. When you ask people what they want for their retirement, they say they want to spend more time with family and friends, maybe take up new hobbies, learn new skills, have more holidays if they can afford to, or get more involved in their local community.

A quarter of older people say they actually want to carry doing some paid work in their retirement, usually part time. They want to stay fit and active, engaged and involved. They want to have an enjoyable and meaningful life, with their views heard and their contributions valued.

Most older people want to stay living in their own homes. At some point they might want to move somewhere smaller and more manageable, close to their family and in touch with their friends.

If people do end up getting frail and needing some support, many would prefer their husband or wife, son or daughter to help look after them. Of course they do – wouldn’t you want the person who helps you get out of your bed first thing in the morning, who washes and dresses you, and takes you to the toilet, be someone you know and love? And many children want to help their mum or dad as much as they possibly can.

But being cared for by a member of your family full time isn’t always what older people want, or what’s possible especially if their son or daughter doesn’t live nearby, and are working and bringing up their own children, as is increasingly the case.

If a member of their family, or friend or neighbour, can’t look after them, people want kind, skilled and reliable carers who they know and trust. They want a say in who that person is, what they do and when.

Older people are desperate not to go into hospital unless it’s absolutely necessary. If they need to for medical reasons, they want to be treated with dignity and respect, then get home quickly and back on their feet. Going into a care home is the last thing most people want for themselves, or for their mum or dad. But if, in the end, it simply isn’t possible for a frail elderly person to continue living in their own home, families want care homes that provide a good quality of life, with interesting activities, that keep their loved ones stimulated and engaged.

What do people get?

The problem is there’s a gaping chasm between what people want as they get older and the reality hundreds of thousands of people now face.

Even when they’re fit and healthy, many older people say they feel written off: their views, skills, experience and contributions dismissed or ignored. Their choices are restricted. You can see this in the lack of opportunities to carry on working and in the poor availability of different housing options.

There is still far too little help for people to stay healthy and well, and a seemingly inexorable rise in long-term lifestyle related health conditions, many of which could have been prevented in the first place.

This particularly affects people living in the most deprived areas who get two or more long-term physical health conditions, and often a mental health problem too, 10 to 15 years earlier than those living in the least deprived areas.

It’s much harder to carry on working, helping your family, or having a wider social life if you’re struggling to cope with ill health.

Increasing numbers of older people aren’t getting the very basic support they need to stay living at home – like grab rails and stair lifts – due to the huge pressures on local authority budgets. These pressures have been growing for years but have now reached breaking point because the government is cutting council budgets by a third.

Isolation amongst older people is a huge and growing problem. Many are getting barely 15 minute home visits with carers turning up late and then rushing off to see the next person.

Families are increasingly having to pick up the strain. The latest census shows 1 in 10 of all adults in the UK now care for an older or disabled person – up 600,000 from 10 years ago. The biggest increase has been in the number of people providing 50 or more hours of care a week.

Many carers see their own health suffer as a result. 1 in 3 have to give up work or reduce their hours. So they struggle financially, employers lose their skills and experience, and it costs the public purse £5bn a year in lost tax revenues and benefit bills.

The lack of preventive care and support means too many older people end up going into hospital or residential care when they don’t need to. This isn’t what they want, and wastes billions of pounds as we pay the price of failure.

Hospitals are left struggling to cope with increasing numbers of very frail, elderly people, with appalling cases of patients left disorientated, dehydrated and neglected on hospital wards. The poor standard of care in some residential homes is a huge cause for concern too.

Causes of care crisis

How have we ended up with the polar opposite of what most people want for their life in old age?

The welfare state

The first reason is that our welfare state was established in a very different age.

When the NHS was created, the average life expectancy was 66 for men – now it’s over 78. Back then the biggest cause of disease and death was infections and accidents. Now it’s long-term illnesses related to people’s lifestyles. Some health conditions that are now common amongst older people, like dementia, were virtually unknown 50 years ago.

Public expectations were also very different: people were more deferential and women staying at home to care for their families was the social norm. Crucially, social care wasn’t included in the creation of the NHS and the state provided support only for people who had no family and couldn’t look after themselves.

Although there have been many changes since 1948, the NHS and wider care system have failed to keep up with the sheer scale and pace of changing needs and expectations.

Politics

With a few notable exceptions, politicians have been similarly slow in grasping the implications of our aging population.

This is partly due to the innate short-termism of politics – the relentless pull of the next general election, rather than the challenges of ten or twenty years time. Although older people are more likely to vote, they have traditionally been less likely to change their vote.

Politicians from all parties have tended to focus on persuading floating voters – usually ‘hard working families’ – to switch their support in order to win power.

Personal experience also matters. Like everyone else, politicians’ parents used to die much earlier so the struggle to cope with looking after a frail husband, wife, mum or dad simply wasn’t something many MPs had been through in years gone by.

All these assumptions are now being challenged.

The baby boomer generation may be more willing to switch support to parties that reflect their aspirations and priorities than previous generations. Many voters in their 40s and 50s are also increasingly worried about how they’re going to cope with looking after mum or dad. And the recent backbench House of Commons debate on dementia was a powerful indication that MPs own experiences, as well as those of their constituents, are pushing care higher up the political agenda.

Society

But it would be a mistake to think the failure to deal with the challenges of our aging population is down to Government and politicians alone. There are deeper causes, about how we as a society view and treat older people.

Too often we seem to want to shut them away. We don’t seem to value or involve older people as much as other countries and cultures do.

We’re obsessed with youth and the young. You see this everyday on our television screens, in newspapers, adverts and films. Sometimes it feels as if older people are being written out of our daily life, even though the UK now has more people over 65 than under 16.

We also have a profound problem with the value we place on care. Britain’s 6 million unpaid family carers are the bedrock on which the whole care system rests. Every single week they provide the equivalent of 3.4 million working days of informal adult social care. The economic value of this contribution has been estimated at over £100bn. Yet too many family carers get precious little support in return.

More than a million paid care workers also provide crucial, intimate and personal support to some of the most vulnerable people in society. Yet low pay and inadequate training are endemic in social care, just as they are in many other predominantly female workforces.

Transforming how we treat older people, and how we value care, can’t be achieved by Government policy alone: it will require fundamental changes in societal attitudes too.

A new care covenant

Our goal must be to create a new care covenant between citizens and the state, involving all parts of our society and economy.

This covenant should be based on the principle that care is a shared responsibility – its risks and benefits are mutual and should not be left to individuals and families to shoulder alone.

It must be grounded in values of dignity and respect for those who need and provide care, ensuring older and disabled people and their families have the same choices and chances to live the lives they want as any other section of society.

And it must seek to strengthen mutual care and support within our families and communities, as well as through care services.

Person-centred care

Our starting point must be that care is based on what people want and need, not on what’s convenient for the state.

Labour’s vision of ‘whole person care’ is essential to achieving this goal. Today, people’s needs don’t fit neatly into the separate categories of physical, mental and social. Whole person care means meeting all of a person’s needs together, in a single care service, rather than continuing with our three essentially separate systems.

A single budget, funding services through a ‘year of care’ rather than simply paying hospitals for admitting patients, would create a strong incentive to shift the focus towards prevention and early intervention, with more care and support provided in the community and at home.

A single service and single budget would make it far easier to develop fully integrated teams of NHS and social care staff across the country, as is already happening in places like Torbay, Greenwich and Edwinstowe in Nottinghamshire. These teams have a single care co-ordinator to ensure people get an assessment, care plan and package of support quickly and effectively.

Some places are going a step further, introducing a single phone number that people can ring if they or their elderly relative needs care and support. Instead of having to speak to countless different people, this single point of contact means families can get information and advice about all the services and support available in their area from just one place. Integrating care services like this can achieve big benefits for users, families and taxpayers.

In Torbay, emergency bed day use for people aged over 75 has fallen by a quarter, and by a third for those aged over 85. Delays in vital help like grab rails and stair lifts, and getting elderly people back home from hospital, are now at negligible levels.

Whole person care will encourage even greater integration of local services by properly joining up commissioning. Links would be made with housing, leisure, planning and transport policies – all of which are vital in helping older people stay active, engaged and involved. But integrating budgets, teams, services and commissioning won’t – on its own – be sufficient. People must also be given more power and control to shape their care and support.

Labour’s personal budgets have already made a big difference. We introduced these for social care in 2007 and for people with long-term health conditions like diabetes, stroke, COPD and mental health in 2009. Between half and three quarters of people using personal budgets and direct payments for social care say they’ve had a positive impact on most aspects of their daily lives.

The latest evaluation of personal health budgets, published in March, found significant improvements in users’ quality of life and wellbeing. Those with the most disabling conditions benefited the most at no extra overall cost to the NHS – in stark contrast to the Dutch experience.

There are of course challenges in making personal budgets work effectively. Many elderly people need active help and support to manage their resources. Some users say the kinds of services and support they really want and need just aren’t available in their area.

Labour councils like Lambeth are leading the way in tackling these problems, by bringing budget holders with similar needs together, so they can shape what’s on offer from local providers. The Council can then influence existing providers, or support start-up enterprises to meet new care and support needs, including in the voluntary and community sector.

Increasing society’s capacity to care

Lambeth is one of a number of co-operative Labour councils that are fundamentally rethinking their roles, finding new ways to offer different services with fewer resources – just as Labour will need to do in Government nationally.

A crucial challenge in achieving more for less is identifying the resources that exist within families and communities, not just their needs, and increasing society’s capacity to care. Using these resources to provide low levels of practical help and support can make a big difference to people’s lives.

Torbay’s ‘Carers 4 Carers’ phone service has shown putting carers in touch with one another to provide mutual advice and support is a low cost way of helping families cope better with the pressures of caring and get more enjoyment out of daily activities.

Membership organisations like Circle and Shared Lives Plus are transforming support for older and disabled people so they can stay living independently in their own homes. Circle members pay a small annual fee and in return can call on a network of unpaid and paid volunteers who provide practical help with everyday tasks like shopping or DIY, and get involved with social events. Shared Lives carers take people with learning disabilities and dementia into their homes and lives, either permanently, for short periods or during the day. They’re paid a modest amount to cover some of their time and expenses but they’re not paid by the hour and offer huge amounts of care unpaid.

Supporting and boosting these kinds of local, trusted, neighbourhood relationships helps reduce social isolation and improve the quality of people’s lives. It can also deliver better value for money. Shared Lives Plus has shown their carers save £8,000 a year for looking after an older person compared to traditional services, and £25,000 a year for those with learning disabilities.

These new forms of community-based, ‘networked’ care have emerged from asking people want they want and need to make their lives better. They’ve started by identifying the capacity within families and communities, then unleashing it using small amounts of state backing and support.

Conclusion

This is something David Cameron’s ‘Big Society’ completely failed to understand: helping people to help one another requires active support from the state – it cannot simply be reduced and withdrawn.

Labour has always believed that an effective state is essential to helping people have real choices, and real chances, to live full and fulfilling lives. But the role of the state must change if we’re going to deliver social justice when there is far less money around.

The truth is we can neither cut nor spend our way to a better, fairer future. Instead, we need radical reforms to public services and the state, as well as to our economy.

Ed Miliband has said One Nation politics is above all a belief that everyone must have a stake in society if we’re going to succeed as a country.

The number of people aged over 85 will double by 2030. 1 in 4 babies born this year is set to live to 100 years old. In the century of the aging society we must ensure our parents, our children – and all of us here too – can look forward to a good old age, rather than face it with fear and despair.

This is one of the biggest challenges we face. It will be Labour’s national mission, achieved through our common endeavour – together, as one nation.