Beyond Silos: Building a Service Around People, Not Diagnoses
When Welsh Government funding became available to establish dedicated Long COVID services, healthcare organisations across Wales faced a common challenge: how do we support people presenting with a complex, multi-system condition that does not fit neatly within traditional medical specialties?
In North Wales, we quickly recognised that Long COVID was not simply another condition requiring another specialist clinic. What patients described was often a profound disruption of every aspect of life. Fatigue, post-exertional symptom exacerbation, cognitive dysfunction, breathlessness, autonomic symptoms, pain, sleep disturbance and psychological impacts frequently occurred together. These symptoms affected people's ability to work, care for family members, participate in their communities and maintain their sense of identity.
From the outset, we were committed to developing the service alongside the people who would use it. The experiences of people living with Long COVID shaped the model from the very beginning. Their stories revealed not only the challenges of Long COVID itself, but the difficulties of navigating healthcare systems organised around individual organs, diseases and professional boundaries.
Many people described feeling "passed around" between services without anyone taking overall responsibility for their care. Others spoke about the stigma associated with symptoms that were poorly understood, difficult to explain and often not visible to others. Above all, people wanted to feel heard, believed and supported by a team that understood the complexity of their experiences.
As the service developed, an important observation emerged.
The challenges faced by people with Long COVID were strikingly similar to those experienced by people with other conditions. We saw many individuals with ME/CFS, post-viral syndromes, breathing pattern disorders, PoTS, Functional Neurological Disorder (FND) and other complex chronic conditions who shared similar healthcare journeys. While diagnostic labels differed, people often experienced the same fragmented pathways, unmet need, delayed access to appropriate support and repeated referrals between services.
This raised an important question: if people have similar needs, similar functional impacts and can benefit from similar approaches to assessment and management, should services remain organised solely around diagnostic labels?
Our answer was to develop something different.
The result was the Living Well Service: an integrated, multidisciplinary model supporting people with Long COVID, ME/CFS, other post-acute infection syndromes, FND, breathing pattern disorders and related complex chronic conditions.
Importantly, this does not mean a "one-size-fits-all" approach.
One of the most important lessons we have learned is that while conditions often overlap, individual experiences vary enormously. Some people need support with understanding and pacing their activity. Others require detailed assessment of autonomic dysfunction, respiratory symptoms or fatigue. Some benefit from psychological support in adjusting to the impact of chronic illness, while others require investigations, medication management or vocational rehabilitation.
Rather than creating multiple separate services, we have developed pathways within the service that can be tailored to individual needs.
The person remains at the centre, while the multidisciplinary team adapts around them.
At the heart of the model is a team that includes physiotherapists, occupational therapists, clinical psychologists and Advanced Clinical Practitioners (ACPs), working collaboratively rather than in isolation. This enables patients to access a broad range of expertise through a single service, reducing the burden of navigating multiple appointments and repeated assessments.
In practice, this means people can often access investigations, diagnostic assessment and symptom management within the service itself. ACP skills allow us to undertake comprehensive clinical assessment, request appropriate investigations and work closely with secondary care specialists when advice is required. Rather than referring patients from one specialty to another in search of answers, we aim to bring expertise together around the patient.
This collaborative approach helps people feel "held" by a service.
For individuals living with a complex, multisystem condition, this is incredibly important. Many have spent months or years trying to find someone who understands the full picture. The reassurance that a team is taking collective responsibility for coordinating care can be as valuable as any individual intervention.
The service won the Welsh Government’s award for delivering multiprofessional community care in 2025.
A key innovation within the service has been the development of advanced clinical practice and non-medical prescribing roles.
Patients with Long COVID and related conditions frequently present with symptoms for which treatment options are evolving and where evidence continues to emerge. Through advanced clinical practice and independent prescribing, the service has been able to provide timely access to medication review and symptom management, avoiding unnecessary delays associated with multiple referrals.
This includes consideration of both licensed and off-label prescribing where appropriate and clinically justified. Decisions are made through careful assessment, evidence-informed practice, shared decision-making and ongoing monitoring. The aim is not simply to prescribe medication, but to use prescribing as one component of a broader, holistic management plan that supports patients to achieve their individual goals.
The service has also embraced a values-based approach to care.
Success is not always measured by symptom resolution. Many of the people we support live with persistent symptoms that fluctuate over time. Focusing solely on symptom reduction risks missing what truly matters to patients.
Instead, we seek to understand how individuals can live as well as possible despite ongoing health challenges.
To support this approach, the Living Well Service utilises the Discovery Programme and the Discovery Star™. This collaborative tool serves both as a goal-setting framework and an outcome measure. Rather than concentrating exclusively on symptoms, it explores broader domains of health and wellbeing, including self-management, daily activities, confidence, relationships, work, roles and participation.
The Discovery Star allows people to reflect on where they are in their journey and identify areas that matter most to them. Importantly, it measures change in a way that acknowledges the realities of living with chronic conditions. Progress is not defined by becoming symptom-free; it is defined by developing understanding, confidence, skills and strategies that enable people to manage their condition more effectively and participate more fully in life.
This aligns strongly with the principles of value-based healthcare.
Rather than asking, "What is the matter with this person?" we increasingly ask, "What matters to this person?"
The answers are often about reviewing activities which are meaningful to individuals and seeing how patients can be involved with them, without making themselves unwell. These meaningful activities may include parenting, employment, hobbies, relationships and other personal goals. These outcomes may not always be captured by traditional medical measures, but they are frequently the outcomes that matter most.
The journey from a Welsh Government-funded Long COVID service to a broader Living Well Service has taught us that healthcare does not need to be constrained by traditional boundaries. Long COVID shone a spotlight on gaps that many people with complex chronic conditions had experienced for years. It challenged us to think differently about diagnosis-led pathways, multidisciplinary working and how success should be measured.
Today, our service continues to evolve, informed by lived experience, evidence, collaboration and innovation. While Long COVID was the catalyst for change, the lessons extend far beyond the pandemic.
By focusing on people rather than diagnoses, combining rehabilitation, advanced clinical practice, psychological support and prescribing within one integrated team, and measuring success through outcomes that matter to patients, we believe it is possible to create services that are not only more effective and sustainable, but also more compassionate.
Because for people living with complex, poorly understood and often stigmatised conditions, feeling heard, supported and genuinely held by a service should never be considered an optional extra. It should be the foundation upon which care is built.
Poster titled Beyond Silos: The BCUHB Living Well Service. It describes a multidisciplinary, co-led service providing holistic assessment, treatment, rehabilitation and supported self-management for people with post-acute infection syndromes and care.
