Research policy for people with multiple long-term conditions and their carers

Abstract

People with multiple long-term conditions (MLTC) are a growing population, not only in the United Kingdom but internationally. Health and care systems need to adapt to rise to this challenge. Policymakers need to better understand how medical education and training, and service configuration and delivery should change to meet the needs of people with MLTC and their carers. A series of workshops with people with MLTC and carers across the life-course identified areas of unmet need including the impact of stigma; poorly coordinated care designed around single conditions; inadequate communication and consultations that focus on clinical outcomes rather than patient-oriented goals and imperfectly integrate mental and physical wellbeing. Research which embeds the patient voice at its centre, from inception to implementation, can provide the evidence to drive the change to patient-centred, coordinated care. This should not only improve the lives of people living with MLTC and their carers but also create a health and care system which is more effective and efficient. The challenge of MLTC needs to be bought to the fore and it will require joint effort by policymakers, practitioners, systems leaders, educators, the third sector and those living with MLTC to design a health and care system from the perspective of patients and carers, and provide practitioners with the skills and tools needed to provide the highest quality care.

Eliciting and prioritising determinants of improved care in Multiple Long Term Health Conditions (MLTC): A modified online Delphi study

“…In other words, there is a need for a more concerted move towards a holistic and individualised care model, built around the needs of the patient, which is organised and delivered by integrated care services to ensure continuity of care and seamless transitions in care between service providers. Similar findings have also been reported by a range of other studies examining improved care in MLTC [25, 2, 1, 9, 26, 27].…”

“…An interesting finding from our study was the identification of training in multiple long term conditions for healthcare and social care professionals as a priority determinant. This is an issue which has received relatively little attention in the literature [25] and may indicate that current training programmes for healthcare and social care professionals continue to be specialist and designed around treatment and care for single conditions, and as such fail to adequately provide care personnel with the requisite skills and knowledge that is specific to care for MLTC.…”

“…Considered from a strategic policy perspective, the key priority determinants identified may be a recognition that efforts to advance person-centred care, which is holistic, integrated and addresses a range of interrelated medical and non-medical care needs of MLTC patients, continues to be slow, and implementation remains a major policy and practice challenge both in the UK and internationally [2, 26, 4, 8]. An important learning point for policy-makers from our study is that these are likely to continue to feature as critical determinants influencing care in MLTC until further significant progress is made towards redesigning care services and delivery around the needs of the individual rather than service providers [26,25]. In relation to care practice, our findings suggest that clinicians and care practitioners need to take further steps to ensure wider non-medical determinants and care needs are fully assessed and taken into consideration in care plans and subsequent delivery of care to those with MLTC [2, 10].…”

“…However, the care needs of those living with MLTC are often broader, encompassing biopsychosocial needs (e.g. mental health and emotional wellbeing) [2, 25] and social circumstances including the impact on health and wellbeing of the wider environment in which an individual is situated [10]. Our study supports the growing body of evidence that further progress towards a holistic and person-centred care model [2, 25, 32] is urgently required, which empowers people to be full and equal participants in their care decision-making to ensure that care delivery can be further optimised to address the diverse range of individual care needs often associated with MLTC [2, 25, 33].…”

“…mental health and emotional wellbeing) [2, 25] and social circumstances including the impact on health and wellbeing of the wider environment in which an individual is situated [10]. Our study supports the growing body of evidence that further progress towards a holistic and person-centred care model [2, 25, 32] is urgently required, which empowers people to be full and equal participants in their care decision-making to ensure that care delivery can be further optimised to address the diverse range of individual care needs often associated with MLTC [2, 25, 33]. This requires a cultural shift in contemporary healthcare and social care philosophy and practice [25], necessitating a move ‘from a single disease-focused biomedical model to a biopsychosocial’ approach [12], as well as further progress towards an integrated care system [2].…”