Implications for policy and practice

Our synthesis of the cross-analysis of the BRACE portfolio of evaluations, interviews with national and regional stakeholders, and a rapid review of evidence on remote monitoring for people with multiple long-term conditions implies a range of actions for policy and practice. These actions are focused on how to improve consideration of the needs and care of the large part (for many age groups the majority) of the patient population who live with multiple long-term conditions. Our main suggestions arising from the synthesis are described in the following paragraphs and summarised in Table 6, where we identify the groups of stakeholders most directly implicated. Implications for research funding and research practice are presented in the subsequent section.

Recognising multiple long-term conditions as the norm

An overriding implication of this study is the need for policy and practice to make consideration of living with multiple long-term conditions the norm, not the exception, at a patient level. This represents a policy ambition whereby the whole picture of care for an individual is central to any interaction they have with the health system, and it would be considered unacceptable for those who plan and deliver care to fail to take account of the whole set of health conditions. There is much discussion of the need for ‘holistic care’ and consequent ‘personalised care’ in numerous contexts, but they are most important for people living with multiple long-term conditions. As noted in this report, there is too often a recourse to new initiatives or pilot projects to try to enable ‘integrated care’ or ‘care co-ordination’ without attending to the patients’ own experiences of multiple conditions, and without addressing fundamental problems with the administration and communication of different appointments, treatments, medications and services.

One potential approach to rectifying this inattention to the needs of patients with multiple long-term conditions, highlighted by one of our interviewees, is to emulate the work led by NHS England to produce consensus guidelines for PEoLC and do something similar for care for people with multiple long-term conditions. Palliative care focuses on the patient and their priorities for symptom control, quality of remaining life and wishes in respect of dying, not the individual condition(s) they are living with. Integrated Care Boards are required by statute to commission palliative care services and are guided in how to do this by NHS England, who in turn consulted widely in creating that guidance. Patient and carer charities, Medical Royal Colleges, health and social care professional and provider associations, NHS England, Health Education England and Public Health England all collaborated to produce the framework on which the guidance is built, and which sets out six ‘ambitions’ and describes the ‘building blocks’ that need to be put in place to achieve them.98

Whether or not it would be appropriate for it to be a statutory requirement, we consider it would be a significant step towards better range and co-ordination of holistic services if consideration of this population group were to be a core part of Integrated Care Board, Integrated Care System and provider organisation strategies, with associated requirements to take account of the complete patient history and their experience of care across departments, services and organisations, etc., and to measure experience and outcomes from the user and carer perspective. Regulation by the CQC could then include monitoring of whether these strategies exist and how far they are being acted upon, using experience and outcomes data to inform this process.

There is a current NICE guideline specifically focused on care for people living with multiple long-term conditions12 and information about particular comorbidities is included in many of NICE’s condition-specific guidelines. But consideration of multiple long-term conditions within care guidance could go further, for example, including prompts to clinicians to ask patients (or their carers) about (other) long-term conditions they may be living with, how the treatment pathway that is the current focus intersects with other treatment pathways and medications, and whether any active co-ordination and information sharing with other clinicians is needed.

We conclude that it is necessary to find more systematic and sustained ways to involve patients with multiple long-term conditions and their carers in determining needs and designing ways to improve care. Our work has revealed how a clear understanding of what matters most to people living with multiple long-term conditions is sometimes lacking. What matters to patients with multiple long-term conditions (where one or more conditions are becoming problematic in everyday living) may not be a new technology or service; it may be as basic as wanting different parts of their care to be properly co-ordinated. For example, they may want the healthcare professionals they come into contact with to each know what each of the others is contributing to that person’s care. National Voices summarised this as: ‘I can plan my care with people who work together to understand me and my carer(s), allow me control, and bring together services to achieve the outcomes important to me.’100 Achieving that would help to reduce the treatment burden on the patient and the ‘navigation work’ that the patient has to undertake.

National Voices’ ‘Ask How I Am’ report and recommendations additionally highlight the importance of always asking about emotional and mental well-being, even if that is not the primary purpose of a contact with the NHS, offering a further possibility for how the needs of people with multiple conditions might become part of routine concern and care when people interact with the healthcare system.101

Based on our review of literature on remote monitoring, there is an existing evidence base, albeit a patchy one, for some innovations that do effectively (and possibly cost-effectively, although evidence about cost-effectiveness is as yet scarce) serve the needs of people with multiple long-term conditions. Examples of possibly cost-effective innovations from our evidence review include home monitoring for patients with advanced heart and lung failure66 and remote monitoring of COPD among patients with multiple long-term conditions.102 The innovations of interest, beyond examples such as those, do not have to be particularly new, but their implementation would not yet be widespread or at scale. There is a role for identifying evidence-based service improvements and how to implement them generally and/or scale them up.

Within Theme 4 we discussed the importance of collecting and monitoring data to measure the care being provided to patients living with multiple long-term conditions and of doing this from the perspective of the user rather than according to an institution or service. Using such metrics would reinforce the importance of caring for this significant element of the patient population and could be used to inform assessments of care quality by the CQC. They might even be included within revisions to the QOF for GPs, and hence be linked to financial incentives, in contrast to the largely single-condition focus of current primary care targets and incentives. Such metrics might focus on measures of care that assess the degree of co-ordination, rather than fragmentation, that indicate whether holistic and personalised care are actually being provided. Examples of such metrics exist (e.g. Crump et al.73), but they need to be implemented, tested and refined at scale.

On 24 January 2023, the Secretary of State for Health and Social Care announced to Parliament that ‘in consultation with NHS England and colleagues across government, my Department will develop and publish a Major Conditions Strategy’. The announcement was quite brief but nevertheless took the space to emphasise the importance of caring for people with multiple long-term conditions:

Our approach will harness the potential of whole person care, addressing the fact that our health and care system has been built in silos, often focused around specific diseases or organs in the body. Our workforce model needs to adapt, reflecting that the NHS is caring for patients with increasingly complex needs and with multiple long-term conditions. We need greater emphasis on generalist medical skills to complement existing deep specialist expertise in the NHS, supporting clinical professionals to heal with whole person care. 103

This is an encouraging announcement. We hope that the implications of this study, as set out above, can be reflected in that strategy and its subsequent implementation.