NHS continuing health care: consigned to the too difficult box?

The 10 Year Health Plan for England contains an ambition to shift care closer to home. But it only contains a passing reference to the role of social care in how that will happen, leaving significant uncertainty on how people with some of the most complex needs are supported outside of hospital. How to manage, provide and fund properly integrated health and social care for people with complex needs is an age-old question, with decades of law, policy and practice attempting to achieve it. This question is exemplified in the operation of NHS continuing health care (CHC).

CHC is a package of health and social care intended to support people outside of hospital – often in their own home. It can be a vital source of support for people at the end of their lives, or for adults with ongoing care needs. It is intended to fund both health and social care services for people whose needs span the boundaries of both systems, and – unlike local authority funded social care – is not means tested. Eligibility for CHC rests on a person’s care needs arising from a “primary health need”, but what this means in practice is far from clearcut.

Our previous work raised concerning questions about how well CHC is working, and in particular whether people eligible for CHC are accessing support when they need it. We found that the number of people found eligible has fallen over time, and – particularly striking – that there is wide variation between integrated care boards (ICBs) in the numbers of people found eligible.

In our new report today, we explore what sits behind these numbers. We spoke to people from across health and social care and used freedom of information requests to understand more about how CHC is operating at a local level – and what we found has important implications for health and care reform.

All or nothing?

As our accompanying Q&A with Sharon Allen shows, the experience and consequences of a CHC assessment are significant. Being eligible for CHC can mean having all of your social care costs paid in full by the NHS. Being found not eligible means the costs could fall onto the local authority or, where people have financial means above the far-from-generous threshold set out in the social care means test, on the person themselves.

The assessment process can be highly stressful, compounding pressures people are already facing. Although a national framework sets out key processes and principles around assessments and was intended to ensure greater consistency, in practice it seems this is not always followed correctly. Low awareness of the existence of CHC among the general public, alongside frequent delays and poor communication between different health care professionals and with families, all contribute to accessing CHC feeling like a difficult and traumatic experience. Compounded by perceptions that the process is unfair and inconsistent, the impact on individuals and families can be devastating.

What did we find?

Although spending on CHC has increased over time (17.1% between 2017 and 2023), fewer people are being found eligible, and the numbers vary across the country. While some of this could be due to differences in health care need – areas of high deprivation and regions with a greater proportion of older people see higher numbers of individuals found eligible for CHC – these factors do not tell the whole story.

Instead, our interviews and focus groups suggest that the wide variety of ways in which ICBs currently manage CHC – with a lack of knowledge, awareness and understanding of CHC among the people involved in assessments, and with patchy training on how to apply the framework – all play a part in it feeling like the luck of the draw for people seeking support. A lack of consistent information about who is being referred, accessed and found eligible for CHC also means our ability to understand who is most likely to miss out is limited.

Most worryingly, with all parts of the system facing rising costs, our work highlights that decision-making could be influenced by wider financial pressures, with concerns that the threshold for CHC is getting higher. This is backed up by other work. This year’s ADASS Spring Survey found that three-quarters (75%) of directors said the number of people presenting to adult social care who were or would have previously been eligible for CHC has increased. Overall, almost half (49%) of directors were seeing fewer people qualifying for CHC, despite a recognition that need was getting increasingly complex.

Strained relationships between organisations at a local level risk undermining ambitions to provide integrated person-centred care for people outside of hospital. In the same ADASS survey, 61% of directors reported an increase in the number of disputes over CHC, suggesting that these challenges are increasing. While we heard some examples of good practice – particularly where there are good relationships at a local level, involvement of all relevant professionals and effective communication – decisions on CHC can feel arbitrary.

The need for action

CHC has been developed through a patchwork of case law and legislation to bridge a gap between health and social care, recognising that many people are best supported in the community. But it has become a microcosm of the systemic challenges inherent in delivering integrated care, exemplifying the struggle many people face in trying to access properly funded and good quality support.

The 10 Year Plan left the task of social care reform to the Casey Commission, which has been asked to provide recommendations for reforming social care based on a “national conversation” about what the public expects from the system and how to best meet people’s needs now and in the future. Nowhere is this question more pertinent than in the operation of CHC, and it must be at the heart of those discussions.

Without action, CHC could continue to be shifted into the ‘too difficult’ box by government. A lack of action risks undermining further efforts to improve integration and deliver on the government’s ambitious plans to shift care outside hospital. More importantly, it would leave individuals and families left picking up the pieces after fighting an underfunded and fragmented system.  

However, it’s also important to understand the context in which CHC is operating. The abolition of NHS England and merger with DHSC means clarity is needed about where accountability for CHC sits, to ensure there are proper oversight and governance mechanisms in place to reduce unwarranted variation and to ensure that access to CHC is not a postcode lottery.

Transparency and consistency are important, but there is a question around how this will be achieved given wider changes. ICBs are also expected to significantly reduce their running costs. With variation in CHC spend a key area that needs addressing, introducing further risk that spending pressures will impact on CHC decision-making. With so much change underway, it’s essential that CHC is part of these discussions and that unwarranted variation in CHC between areas and demographic groups is fully understood and addressed.

In the midst of this uncertainty are people needing support, often at the most challenging times. That CHC is complex is no excuse for overlooking it. If we want to support people in the community, we need a system that is fair, consistent and enabling. It’s not just a question of funding, but a fundamental reflection of how as a society we want to support people when they need it most.  

Read our new Nuffield Trust report, All or nothing? Access and variation in NHS continuing health care, which has been published today. The research was part-funded by the Nuffield Foundation, but the views expressed are those of the authors and not necessarily the Foundation.