Improving clinical co-ordination of care for people with multiple long-term conditions

Key messages

This long read focuses on the clinical co-ordination of care for people with multiple long-term conditions as part of a wider holistic approach. It outlines a set of principles on clinical co-ordination for commissioners and clinicians (by which we mean any health care professional) that we believe should underline a new approach to care for people with multiple long-term conditions.

Clinical care should, by default, consider multiple long-term conditions

Increasingly, more of us (including some of the authors of this piece) are living with multiple long-term conditions – defined as having two or more chronic health conditions. These might be conditions that are likely to show up together (such as chronic kidney disease, diabetes and heart disease, or chronic obstructive pulmonary disease and heart disease), or more unrelated (such as bipolar disorder, Crohn’s disease and polycystic ovary syndrome). Life-extending medical advancements, greater understanding of illness and disease, and a widening gap between life expectancy and healthy life expectancy all add up to a growing number of us living with multiple long-term conditions. Currently in the UK, between 20–40% of the population live with multiple long-term conditions, rising to more than half of all people aged over 65, and the numbers are likely to increase. The government’s three shifts for the health and care system (from analogue to digital, hospital to community, and from sickness to prevention) are all designed to respond to this change.

It is increasingly clear that the 20th-century health model of single-condition episodes of care cannot meet the needs of people in the 21st-century living with multiple long-term conditions. For example, someone might see a cardiologist for heart disease, while their chronic obstructive pulmonary disease is managed by a respiratory physician or their chronic kidney disease is managed by a nephrologist, all with separate care plans. Although the person may receive expert care from staff trained in these specialisms, important connections between these health conditions and potential preventive actions may be missed. This means that people with multiple long-term conditions have poorer experiences of health care due to the added burden of navigating multiple pathways, clinicians and admin, and may be more likely to miss out on optimal care for their individual conditions or even experience harm. They also need more health and care support, and are increasingly likely to be represented among A&E attendances and on elective waiting lists.

As recognition of this issue has grown, so has the research exploring how to address it. However, different clinicians and researchers define ‘multiple long-term conditions’ in different ways, leading to diverse research strands from which it is not always easy to draw conclusions. Much of the research is influenced by the historical focus on single-condition studies – assuming single-condition insights are merely additive, rather than reflecting the complexity that is greater than the sum of its parts, which risks overshadowing the broader perspective.

One area of care for people with multiple long-term conditions that has had a more consistent focus is research on supporting older populations living with frailty. This is positive but is only one part of the larger population living with multiple long-term conditions; research suggests that identifying and supporting younger people to live well can reduce or delay their risk of frailty. This is particularly relevant in a context where people on the lowest incomes or living in areas of high deprivation are more likely to acquire more multiple long-term conditions, and at a younger age, than people on the highest incomes or those living in areas of low deprivation. These are also the populations who are least able to access care and resources for self-management. Recognising and addressing the diverse needs of people with multiple long-term conditions, as well as the combinations and complications of those conditions, is complex. It requires an approach that appreciates and works with that diversity, including co-designing with people directly affected, rather than trying to oversimplify it.

As the NHS wrestles with existential crises, getting the right support for people with multiple long-term conditions is key to ensuring its future. But this is not about creating a new pathway for care to sit alongside other condition-specific pathways. Rather, it is about making room for flexibility and co-ordination within the health and care system so that people receive holistic care and are supported to manage their multiple long-term health conditions, whichever service or clinician they encounter. This is also key for clinicians, supporting work satisfaction and skills development across specialties.

In this long read, we focus on the issue of co-ordination of clinical care across hospitals and primary and community health services for people with multiple long-term conditions. We draw on existing research and expert insights, including a workshop that brought together clinicians (including GPs, consultants, nurses and allied health professionals, policy-makers, and people with lived experience of multiple long-term conditions) to consider ways to improve clinical co-ordination of care for people with multiple long-term conditions.

What we share here is a set of principles for clinical co-ordination that we believe should underline a new approach to care for people with multiple long-term conditions – a shift towards considering, by default, that whenever people access health and care they may be presenting with multiple long-term conditions. This is an essential part of addressing and improving several related aspects of health and care (although not the entirety). The government’s commitment to making the proposed three shifts should improve care for people with multiple long-term conditions. The King’s Fund has previously argued that the capacity and capability of local systems to deliver these transitions, particularly in community settings, is limited, particularly given cuts to integrated care boards. These changes will also introduce new challenges for staff, patients and their carers as they adapt to different systems and ways of working, and so the implementation will need to be carefully supported.

Additionally, the immediate priority of reducing elective care waiting times may inadvertently lead to a greater focus on addressing single conditions, making it more difficult to address and prioritise the more complex needs of people with multiple health conditions.

However, if we get this right, it will be transformative. People with multiple long-term conditions will face a lower burden of treatment and co-ordination of their care (for example, admin and IT systems that facilitate rather than complicate their care). They will also be a valued part of the decision-making process about their care and recognised as capable self-managers (where they are able and willing to be), and will have better access to preventive care, supporting them to live well for longer. The care that they receive will also be of better quality, because it takes into account the whole person, rather than treating individuals as a collection of unrelated parts.

One example we heard about during this project was the Leeds virtual ward programme. This involves co-ordination across multiple sectors, involving colleagues from primary, secondary and community health, adult social care, mental health and the third sector. People accessing the service described being listened to and treated with dignity, and receiving good support – for example, addressing how medications for different health conditions may interact with each other or create an unsustainable combination of side effects (polypharmacy), or being able to stay in their homes, avoiding hospital and enabling successful support.

What clinicians need to be able to co-ordinate care

The NHS currently operates on specialty-based models of care, particularly in secondary care settings. Increasingly, specialised clinicians have been able to gain a deeper understanding of conditions and treatment, but this has brought some unintended consequences of siloed pathways and services. People with multiple long-term conditions are therefore treated separately for each specific, discrete diagnosis, rather than holistically. This oversimplifies their health needs and makes it hard for clinicians to take a ‘whole-person’ approach to their care. Without a clear understanding of where accountability for managing people with multiple long-term conditions sits within the system, patients are often left to do the work of managing their own care by co-ordinating across multiple clinicians.

By default, GPs are often the co-ordinators of the different parts of an individual’s care, but where people see multiple clinicians within a GP practice, the lack of continuity can also hamper co-ordination. Care needs to be focused on the whole person rather than any one condition, and there are several things clinicians need to enable this.

The ways of working we describe here are already in place in some systems, but they are piecemeal and often part of isolated initiatives, rather than being routine outcomes of a system geared towards effective management of people with multiple long-term conditions.

Setting up the conditions for clinical co-ordination

IT and physical infrastructure are key to enabling clinical co-ordination. There are five aspects to this:

• Up-to-date information systems and hardware.

• Interoperability – IT systems that work together within and between organisations (still a key challenge in many areas) – for example, to enable cross-referrals between secondary care specialties.

• Information governance arrangements that enable clinicians across a system to have access to the same patient records. North Central London Health Alliance specifically identified information governance that works within organisations but derails efforts to work across sites and specialties as hampering their goal of primary and secondary care working together, either across their geographical area or between geographical areas. Access to the London Care Record helps, but clinicians need to be able to see individual patient records to make sure collaborative care can work effectively.

• Clinicians able to use the systems, time and resource to learn how to use new software effectively and, crucially, understanding how the changes will support improved clinical co-ordination in ways that benefit patients as well as clinicians.

• Systems and governance arrangements that clearly enable patients to access and share information with health care professionals.

The physical estate is also a significant element when it comes to delivering co-ordinated care. We heard examples of services co-locating or providing joint clinics to meet the needs of their local populations with common clusters of health conditions. One clinician described how this can build trust with patients as they experience their needs to be known and understood by the service as a whole, and continuity is held with the service rather than a single clinician. However, it is important to remember that co-location does not automatically generate this closer working, and that once relationships are established, co-location may be less important than temporary spaces where teams can meet when needed.

Although our focus here is on clinical co-ordination, it is important to note that patients often present with a wider set of needs, for example social care, caring responsibilities, housing, employment or migration status. Even with highly co-ordinated clinical services, these wider needs can make it difficult for people to fully engage with the appropriate treatment and care regime. Therefore, clinicians may have a role in co-ordinating with other services to support their patients with multiple long-term conditions, and this can be facilitated through good linkages with wider systems. For example, the Lambeth Together partnership brings the NHS, council, and voluntary, community and social enterprise sector services together to ensure that the right support is available for people as early as possible, to achieve better population health across the borough. These wider collaborations also need to have compatible ways of sharing information to support their work.

Training to facilitate clinical co-ordination

Historically, most clinicians have not been trained to manage people with multiple long-term conditions and face wider pressures that compete with such a focus.

NHS leaders could support change by recognising these limitations among the existing workforce and facilitating continuing professional development training on managing multiple long-term conditions. The General Medical Council and Royal Colleges could also consider whether management of multiple long-term conditions is sufficiently addressed in their current curricula. Training should cover the technical, topical knowledge needed to understand management of multiple long-term conditions, as well as encouraging and facilitating work across disciplinary boundaries and with other clinicians who are based in different organisations. This could go some way towards redistributing the work attached to caring for people with multiple long-term conditions.

Nurses are often significant contributors to clinical co-ordination, yet there is no standardised approach for training general practice nurses. The General Practice Nursing Foundation School (GPNFS) in Staffordshire has set up a programme to respond to this gap, which includes training on multiple long-term conditions. In an independent evaluation by The Queen’s Nursing Institute, providing well-trained nurses who have an understanding of the management of multiple long-term conditions is shown to be a vital contribution to the primary care workforce, and to contribute to clinical co-ordination more widely.

Given that training around multiple long-term conditions is not yet embedded sufficiently in student training, it also needs to be part of clinicians’ continuing education. This could include activities such as interdisciplinary workshops discussing approaches to care planning, or support through guidance such as Bristol University’s tools on how to implement whole-person rather than individual condition-focused reviews.

Training is a time and cost investment. However, as the number of people living with multiple long-term conditions increases, training to support them needs to be seen as essential for clinicians’ ability to provide good care. The GPNFS programme described above could therefore be viewed as a long-term investment in the local health and care system.

Cultural shifts in the workforce

Clinicians may also need to shift their thinking to work in new ways. During our project we heard from clinicians themselves about barriers to this, which have been embedded through a long history of how services have been organised, such as separate key performance indicators for different teams and services. These included, for example, a tendency for inflexibility, a desire to stay within their comfort zones, or weak relationships between different departments and organisations – all of which are also features of a stressed workforce.

There are several key changes needed. For example, specialists need to develop a way of thinking that takes multiple long-term conditions into account, rather than solely focusing on care within their own area of expertise. This also means considering whether there are opportunities to bundle together requests for tests that they know will be useful at upcoming appointments if they are requesting blood tests. This values patient time and experience by avoiding duplication of routine procedures, as well as avoiding shifting responsibility to lower-tier staff. Primary care teams can support specialists in making this shift by using informed referrals, so that the individual arrives in secondary care with holistic information to support their treatment, rather than just for a single health condition. Crucially, this approach needs support from management so that clinicians are properly resourced to work in these different ways.

Strong communication between clinicians – between primary and secondary care, as well as between secondary care providers – is an important element of this. The LUCID study in Leicester, Rutland and Leicestershire uses a multidisciplinary team approach to bring together GPs, kidney consultants, clinical pharmacists, social prescribers, data specialists and others. The programme brings the knowledge of expert kidney consultants into primary care, and provides a tool to identify patients at high risk, in addition to clinics to support patient management. The initial pilot saw improved clinical outcomes and patient satisfaction.

During the project we also heard that specialists find they develop these relationships best when they work and deliver training in primary care. This has benefits for everyone: it builds technical knowledge in primary care, develops specialists’ understanding and appreciation of the role of primary care, and supports the informal relationships essential to successful shared care. For example, North Central London Health Alliance is testing an approach to managing the highest users of primary care through consultants working with co-ordinators and GPs. As part of this, consultants are learning about the level of complexity in primary care and the issues faced by primary care clinicians in managing people’s care.

The Chief Medical Officer has championed the importance of generalist skills among clinicians as the population ages, and particularly how to ensure specialist doctors are able to maintain their generalist skills. It is also important to promote the role of generalists who can upskill in particular specialties, for example GPs with clinical extended roles. Each of these would mean skills that enable specialists and generalists to understand and work closer together.

The introduction of care co-ordinators and care navigators operating in secondary and primary care is another way that roles are being used to improve clinical co-ordination. These new roles assist people – patients and clinicians – to navigate the system. However, there is no standard definition of these roles, which can be confusing for patients and the public. We also heard during the project that these roles are not consistently implemented or valued. For example, a primary care network was ending its care navigator role due to resource constraints, despite local primary care colleagues advocating for it based on their experience of its usefulness.

Similarly, patients, and especially carers, find that their own role in supporting clinical co-ordination is often undervalued and unsupported. But facilitating patient and carer involvement – valuing people’s contributions, and making sure they have a named contact who enables them to reach their clinicians – can improve this in several ways, leading to more engaged patients, more effective care planning, and potentially cost savings (for example, through patient-initiated care).

Clear roles and responsibilities

Finally, clear definition of roles and responsibilities among the different clinicians involved with a person’s care is a vital enabler of co-ordination, for example within multidisciplinary teams. This is particularly important given the diversity of multiple long-term conditions and the different ways they can combine and present. Not all clinicians will have the same capacity, ability or desire to lead, so it is important that the different responsibilities within the multidisciplinary team are clear and understood. This will help better decisions to be made about how multidisciplinary teams agree care planning, implementation and monitoring, or how they identify a named co-ordinator (rather than ‘point of entry’) to manage care. There are different ways these can be configured – for example, care co-ordination held by a complex care team in North Somerset, or GPs as the main point of co-ordination in North West London, where Connecting Care for Adults brings together consultants and the local primary care workforce to review patients with multiple long-term conditions and address their needs, also upskilling GPs. Another example we heard about was the Care Programme Approach in secondary mental health services, where any member of staff could act as a single point of liaison for the patient, planning and co-ordinating their care (and links to other clinicians or service providers). Although this approach has now been replaced, there is rich learning from its implementation.

What commissioners and system leaders need to do to enable clinical co-ordination

This long read has been written at a time of great change and uncertainty, with a new government and multiple changes to the strategy, architecture and leadership of the health and care system. Regardless of these changes, those commissioning health and care still need to consider how to improve clinical co-ordination for people with multiple long-term conditions. The actions suggested in this section will need to be considered in the context of the 10 Year Health Plan, with roles and responsibilities for commissioning and service development still emerging.

System architecture

As well as looking at how to support clinicians to work differently, in ways that better suit people with multiple long-term conditions, it is useful to also consider how the system itself might need to flex. As it stands, clinicians report being constrained in their ability to tailor care to individuals’ needs by system rigidity. Three key areas were highlighted during this project.

First, the financial operating system limits what both primary and secondary care providers are compensated for. This restricts delivery to care within functional silos or results in duplicated care. For example, in primary care, the Quality and Outcomes Framework (QOF) often focuses on single conditions, incentivising GPs to demonstrate control of specific metrics, such as HbA1c levels in diabetes patients. However, if a patient is receiving regular treatment in secondary care, such as dialysis, they may already be receiving regular blood tests and monitoring. Requiring additional blood tests solely for QOF purposes is not beneficial to the patient but is important for the funding received by the general practice.

This needs to be addressed to incentivise clinicians to provide whole-person care, and to make it easier for funding to follow patients between acute and community settings. This requires effective commissioning at both a national and local level, which in the context of recently announced cuts to headcount is under pressure. However, it is not helpful to see this only in terms of efficiencies. Removing financial system constraints on effective care for people with multiple long-term conditions is an essential part of future-proofing the system against poor-quality provision for the increasing numbers of people living with such conditions.

Second, existing clinical pathways, protocols and guidance are almost exclusively single condition based. Although these are important mechanisms for ensuring that standardised, high-quality care is delivered, rigid adherence can be counterproductive when it runs counter to the needs of individual patients. Given that it is not feasible to provide as many different pathways as there are combinations of long-term conditions, enabling a multidisciplinary or generalist approach, based on shared risk, may be more effective than commissioning a combination of single-issue protocols and pathways.

Third, job plans are currently tightly defined, reinforcing a siloed model of health care. To enable clinicians to tailor care to the needs of people with multiple long-term conditions, job plans need to have more flexibility built in – for example, to facilitate work across organisations and settings, such as in the Connecting Care programme that brought consultants into primary care to support GPs in managing patients with multiple long-term conditions. This needs to actively incentivise work that, as the default, considers multiple long-term conditions and how to offer an integrated response when they are identified.

Local knowledge

Specific needs can be identified within local populations, in line with their sociodemographic (especially relating to age and deprivation) and clinical profiles. Commissioners who have a strong knowledge of their local population can use this data to identify which models would best suit their needs. There is no single model that fits the care needs for all people with multiple long-term conditions, and a range of different models have been developed and tested. For example, the Silver Clinic in Brighton supports the management of complex health conditions, polypharmacy, and frailty for people ageing with HIV, in response to local demand based on comparatively high numbers of older people living with HIV in the area.

However, as well as responding to local need, care models also require shared principles around providing care for people with multiple long-term conditions to facilitate consistent, high-quality provision. These principles include:

• ‘whole-person care’ rather than providing care in silos

• clinicians centring the needs of the person in front of them – including any multiple long-term conditions needs – rather than their own specialism

• strong communication between clinicians for enabling good clinical co-ordination

• recognising patient and carer roles in managing multiple long-term conditions (as outlined in the previous section).

It is also important that commissioners recognise the unique and valuable perspectives that clinicians, patients and carers can all bring to service design. Combining these insights with the data to co-produce service design is therefore essential for developing effective services. However, external and internal pressures often mean this remains an aspiration rather than an outcome, particularly in light of recent headcount cuts.

Measurement

The diversity of multiple long-term conditions, and the strategies for managing them, mean that it is often more appropriate to measure outcomes rather than processes, which are hard to compare. However, what tends to get measured are things that are easily countable – activity rather than outcomes.

This is an area where there is a need for more work. Establishing whether there are metrics that can serve as comparators is important, but there also needs to be a more fundamental discussion about determining what outcomes are most valuable to people and professionals, and what might be expected from clinical co-ordination. Research funded by the NIHR Multiple Long-Term Conditions Cross-NIHR Collaboration programme is exploring this in 2025. The team is identifying existing measures of care co-ordination, working with a wide group of stakeholders (including people with multiple long-term conditions and clinicians) to establish consensus on what is important to measure and how this could be operationalised. They hope to produce a measure of care co-ordination that can be trialled.

Further considerations

The current financial context makes it very challenging to deliver high-quality care, with change and uncertainty affecting both national and local system levels, making long-term planning very difficult. But it is also clear that despite the efforts of many committed clinicians, there is a need to improve clinical co-ordination of care for people with multiple long-term conditions. Some of these improvements are in the gift of clinicians, some are in the gift of commissioners, and some require larger system-wide change to deliver. There are several questions this project could not address, but we highlight them here.

There are some positives, in that we already know there are some things that work and that can be operationalised more widely – for example, information governance arrangements that enable clinicians across a system to have access to the same patient records. However, the extra step needed is to ensure that everyone relevant is informed that they have this access, understands why it benefits their work, and has the training needed to access the data and/or operate new systems. Similarly, there is existing good practice for supporting people with frailty that could be more widely used. The question is how to ensure that good practice gets consistently shared and that clinicians have the time and resources to learn and implement relevant changes.

A strong theme of this project has been about how to enable and encourage clinicians to work differently and across specialisms and sectors, in the context of a system that has been historically focused on single condition management. One aspect of this is changing expectations of staff – enabling clinicians to use their own initiative, rather than demoralising them with inappropriately restrictive protocols. In our workshop, we heard an example of a local system’s ambulance protocol that defaults to taking older people who are on blood thinners and have fallen to hospital, even where, for some, admission is likely to lead to a poor outcome, rather than taking account of shared decision-making. If clinicians can co-ordinate more meaningfully at these times and understand each other’s risks and responsibilities (as discussed earlier), then not only will patient outcomes improve but professional morale and relationships will also benefit. What changes are needed in culture and management of risk to allow professionals to make these decisions?

This is also about changing expectations of the relationship between patients, carers and clinicians. Historically, the power balance has leaned strongly towards the clinician, and this is difficult to alter, despite a growing trend of patients and carers who are well-informed about their conditions and the expectations (or experiences) of having to co-ordinate their own care. There is a need to rebalance power in health care interactions, with clinicians and patients working together as partners, able to acknowledge expertise and its limits – on both sides – to support their care. This can enable improved clinical co-ordination that benefits from the patients’ understanding of their different interactions. It can also support more attention to what is most valued by the patient, and increased self-management, which in turn will support the individual’s engagement with health care. Working in this way can also address some of the health inequalities experienced by people with multiple long-term conditions in terms of access to and experience of care. What is needed to change these expectations and ways of interacting? What do people and professionals need to understand about each other’s roles? What metrics are needed to prioritise patient experience?

It is also important to acknowledge the limits of clinicians’ roles, even if clinical co-ordination were improved. Social care, housing and benefits, to name a few factors, may all play a role in supporting a person with multiple long-term conditions. Socio-economic and environmental factors are key drivers of overall health and need to be understood in conjunction with the role of health care. Clinicians can play a role in co-ordinating with professionals beyond health care (eg, social care, housing or local planning), but this requires another layer of understanding of different roles and responsibilities. With the planned cuts to integrated care boards, the risk is that these relationships face more barriers. How can cross-sector relationships be best supported in this context?

Ultimately, improving clinical co-ordination of care comes down to having a health care system that is able to manage, not limit, complexity – one with enough flex to accommodate a diverse population with multiple long-term conditions, wherever they live and whatever combination of needs they present with. This is not something that can change overnight and there are many questions still outstanding. But getting this right has the potential to benefit clinicians’ experiences as much as it might benefit patients’ experiences and outcomes. The future of health and care needs to accommodate people with multiple long-term conditions as the norm, not the exception.