I will never forget the dispiriting journey of my grandmother through England’s health and care system and the battles my mum fought to get her basic levels of care. Like generations of pensioners, my gran lost her life savings to help fund her care. And like many others, while there were some lovely people, the standard of care she received was, at times, poor. She regularly had things stolen and faced a daily struggle to get the help and care she needed.
The truth is we currently have a malnourished, minimum- wage social care business that will never provide the standards of care that we all want for our parents and for others. It is why many older people end up in hospital, because the quality of care and support they need to enable them to live at home for longer is, too often, simply not available.
Stories of older people neglected or abused in care homes, isolated in their own homes or lost in acute hospitals – disorientated and dehydrated – recur with ever greater frequency. Baroness Joan Bakewell highlights some of these issues in her foreword, describing it as a “steady erosion of care, and with it human dignity”.
I’ve thought long and hard about why this is happening. It is in part explained by regulatory failures and there are plenty of lessons to be learnt from the failings at Mid Staffordshire, Morecambe Bay and Winterbourne View. Changes in nursing and professional practice may also have played a part. But it’s not that nurses, or social care workers, don’t care anymore. On the whole, the staff who looked after my gran did a magnificent job. It is more that the system is not geared up to deal with the complexities of the ageing society.
Now there are ever greater numbers of very frail people in their 80s and 90s, with intensive physical, mental and social care needs. Hospitals are still operating on a 20th century production-line model, with a tendency to see the immediate problem – the broken hip, the stroke – but not the whole person behind it. As Caroline Abrahams and Michelle Mitchell put it in this collection: “The problem is that most older people have a number of different needs with which they require help but our health system typically responds to each medical condition separately.” Hospitals are geared up to meet physical needs, but not to provide the mental or social care that we will all need in the later stages of life. Our hospitals, designed for the last century, are in danger of being overwhelmed by the demographic challenges of this century.
That is the crux of our problem. But to understand its roots, it helps to go back to the 1948 World Health Organisation definition of health: “a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity.” For all its strengths, the NHS was not set up to achieve this simple vision. It went two thirds of the way, although mental health was not given proper priority, but the third – social – was left out altogether. The trouble is that the ‘social’ is often the preventative part. Helping people with daily living, staying active and independent, delays the day they need more expensive physical and mental support.
For 65 years, England has tried to meet one person’s needs not through two but three services: physical, through the mainstream NHS; mental, through a detached system on the fringes of the NHS; and social, through a meanstested and charged-for council service, that varies greatly from one area to the next. For most of the 20th century, we just about managed to make it work for most people. Now, in the century of the ageing society, the gaps between our three services are getting dangerous.
Wherever people are in this disjointed system, some or all of one person’s needs will be left unmet. In the acute hospital ward, social and mental needs can be neglected. This explains why older people often go downhill quickly on admission to hospital. In some places, such is the low standard of social care provision in both the home and care homes, barely any needs are properly met. And in mental health care settings, people can have their physical health overlooked, in part explaining why those with serious mental health problems die 15 years younger than the rest of the population. As Alastair Campbell writes in chapter 3, “This disparity is absolutely unacceptable”, and our current approach is “brutally wrong”.
This government’s response of greater competition and privatisation is the wrong answer. First of all, evidence shows that market-based health systems cost more. International comparisons of the G20 by the Commonwealth Fund show that countries with market-based systems spend a higher proportion of GDP than the UK, as set out in Mary Riddell’s chapter.
Secondly, the government’s market framework will create more fragmentation with larger numbers of providers and less collaboration – but the future demands integration. Angela Coulter’s chapter addresses this point directly. She writes, “what’s needed is a shift away from a reactive, disease-focused, fragmented model of care, towards one that is more proactive, holistic and preventative.“
On a practical level, families are looking for things from the current system that it just isn’t able to provide. They desperately want co-ordination of care – a single point of contact for all of one’s needs – but it’s unlikely to be on offer in a three-service world. So people continue to face the frustration of telling the same story over again to all of the different council and NHS professionals who come through the door. Carers get ground down by the battle to get support, spending days on the phone being passed from pillar to post.
What is too often missing from the media debate is the effect that our separate health and care systems have on younger people and working-age disabled people. The lack of a whole-person approach holds equally true for the start of life and adults with disabilities. As Richard Hawkes writes in chapter seven, “the care crisis is as real for them as older people.” Richard’s chapter on “bringing the person back in” rightly calls for social care reform to have “the needs of disabled people at its heart.”
If we leave things as they are, people will continue to feel the frustration of dealing with services which don’t provide what they really need, that don’t see the whole person.
Whole person care
Whole person care is based on two unshakable assumptions. First, that the health and care we want will need to be delivered in a tighter fiscal climate for the foreseeable future, so we have to think even more fundamentally about getting better results for people and families from what we already have. Second, the NHS has no capacity for further top-down reorganisation, having been ground down by the current round. Karen Jennings writes in chapter eight, “There needs to be consideration of how best to change the system while avoiding further unnecessary upheaval for staff and service users.” And so I am clear that any changes must be delivered through the organisations and structures we inherit in 2015.
That doesn’t mean planning for no change. I am clear that we could get much better results for people, and much more for the £104 billion we spend on the NHS and the £15bn on social care, but only if we take a new approach.
A service that starts with what people want – to stay comfortable at home – and is built around them. If the NHS was commissioned to provide whole person care in all settings – physical, mental, social from home to hospital – a decisive shift could be made towards prevention.
We need incentives in the right place – keeping people healthy at home and avoiding unnecessary hospital admissions. And we must take away the debates between different parts of the public sector, where the NHS won’t invest if councils reap the benefit and vice versa, that are utterly meaningless to the public. This is why Labour is asking if the time has come for the full integration of health and social care – one budget, one service, co-ordinating all of one person’s needs: physical, mental and social. That would be true human progress in the century of the ageing society. A National Health and Care Service for the 21st century.
The challenges of the 21st century are such that we need to make a shift to commissioning for good population health, making the link with housing, planning, employment, leisure and education. As Clare Gerada argues in chapter ten, “Patients have multiple needs that require more than ‘health’ and are not best served by competition but instead collaboration between health (physical and mental) services, local government, housing, education and others.”
This approach to commissioning, particularly in the early years, begins to make a reality of the Marmot vision, where all the determinants of health are in play. Improving public health will not be a fringe pursuit for councils but central to everything that they do. In chapter five, former director of public health, Gabriel Scally sets out how public health can assume a broader role at a local level.
This approach also solves a problem that is becoming increasingly urgent. Councils are warning that, within a decade, they will be overwhelmed by the costs of care if nothing changes. One of the great strengths of the one-budget, whole-person approach would be to break this downward spiral. It would help to give local government a positive future and local communities a real say. The challenge becomes not how to patch two conflicting worlds together but how to make the most of a single budget.
To address fears that health money would be siphoned off into other, unrelated areas, reassurance would need to be provided by a much more clearly defined national entitlement, based around a strengthened National Institute for Health and Care Excellence (NICE). It won’t be the job of people at local level to decide what should be provided, but it will be the local job to decide how these entitlements should be provided. Sir Michael Rawlins suggests some possible principles in chapter nine that could underpin such entitlements and what the implications might be for individuals and families should we accept these principles.
The post-war welfare state was created to vanquish the five giants of the 20th century – squalor, ignorance, want, idleness and disease. If we leave things as they are, the 21st century will add a sixth – fear of old age.
If we do nothing, the fear of old age will only grow as we hear more and more stories of older people failed by a system that is simply not geared up to meet their needs. Whole person care means giving all people freedom from this fear, all families peace of mind.
Labour’s policy consultation is asking for views on how we pay for social care, with two basic choices – a voluntary or ‘all-in’ approach. James Lloyd sets out some important issues in debates about these options in his chapter on the future funding and organisation of care.
Whole person care is a vision for a truly integrated service, not just battling disease and infirmity, but able to aspire to give all people a complete state of physical, mental and social wellbeing. A people-centred service which starts with people’s lives, their hopes and dreams, and builds out from there, strengthening the NHS in the 21st century. A service which affords everyone’s parents the dignity and respect we would want for our own.
- I don’t yet have all the answers and there is still much debate to be had.
- How will whole person care provide for the whole child, the whole disabled adult and the whole older person?
- What will be the role of national and local government?
- How do we stop the postcode lottery and set out the health and care entitlements that every citizen can expect?
- How do we pay for social care when resources are tight, with an ageing population?
- And how can we stop people fearing old age and have true peace of mind throughout a longer life?
These are huge questions that require scale and a sense of ambition in our answers. This book starts to explore some of these challenges and discuss potential solutions. I’m grateful to all the authors of this pamphlet who have all made valuable contributions to Labour’s health policy review. Whilst the views expressed in these chapters don’t necessarily reflect Labour policy or thinking, the ideas expressed form an important part of the debate. It’s a debate that is now urgently needed. To rise to it we will need political courage and ideas that are equal to the scale of the challenge the 21st century is bringing.