Chief investigator: Dr Leire Ambrosio, Lecturer, School of Health Sciences, University of Southampton.

Team:

Professor Mari Carmen Portillo, School of Health Sciences, University of Southampton

Dr Lindsey Cherry, School of Health Sciences, University of Southampton

Dr Kinda lbrahim, Associate Professor, Faculty of Medicine. University of Southampton

Dr Michelle Myall, Principle Researcher, School of Health Sciences, University of Southampton

Ms Rashmi Kumar, PPI representative

Partners: Hampshire and Isle of Wight Integrated Care Board, Hampshire and Isle of Wight NHS Foundation Trust, University of Southampton, Diabetes UK, SO:Linked (Southampton Voluntary Services).

Started: 1 October 2024

End: 31 March 2026

Why is this research important? In the England over 15 million people are living with at least one long-term conditions (LTC). People from under-served groups, are at greater risk of having one or more than one LTCs. This not only affects a person’s physical health, but other aspects of their lives, such as emotional, cultural, and socio-economic wellbeing. It is key for healthcare professionals, to understand and assess how a person is living with an LTC to provide person-centred care. We recently developed the Living with Long Term Conditions (LwLTCs) scale for English-speaking populations. This is a person-centred questionnaire to evaluate how well a person lives with a long-term condition, to inform care for people based on their individual needs.

What we found

We found that adults with LTCS face a  "daily burden" because their symptoms fluctuate unpredictably, often leading to social isolation and a feeling of being "left behind" by a fragmented healthcare system.

While both Adults and Healthcare Professionals felt the LwLTC scale is a valuable "communication bridge" that can highlight hidden mental health and social struggles, some barriers remain.

For the tool to work in real life, it must be flexible—offering paper and digital versions or help from a staff member—rather than being a "one-size-fits-all" tick-box exercise.

Ultimately, the findings show that while the scale helps make invisible struggles visible, its success depends on building trust, ensuring cultural sensitivity, and making sure that the information gathered actually leads to obvious changes in a patient's care.

What we did with the new Knowledge

By discovering the deep emotional and physical challenges real people face, we are supporting patients with LTCs to have a voice in their own care. We used this new knowledge to help the healthcare system move toward truly individualised and flexible care by highlighting that the scale works best as a "communication bridge" to uncover invisible mental health and social struggles.

Our findings will help NHS move away from generic digital pathways by advocating for a "digital-choice" framework that offers paper, Braille, or face-to-face assistance for those who need it.

By collaborating across the SCALE project, we are discovering how to build trust with underserved communities and ensuring the care system respects the "real-life" expertise of the patient.

Where next?

Building on these findings, we view this not as a conclusion but as a vital first step toward transforming how the NHS handles LTC care.

A major next step is addressing the "readiness gap" in current practice by developing formal guidelines for facilitated engagement, where staff are trained to help patients navigate the tool face-to-face to prevent digital exclusion.

We plan to take these learnings further by advocating for the scale to be used over time to track a person's health journey, rather than relying on a single snapshot. While it remains a struggle to shift traditional clinical systems away from rigid pathways, these findings create a sense of urgency: if we do not adopt these flexible, person-centered tools, we risk leaving the most vulnerable patients with LTCs far behind.