Management of individuals with complex breathlessness in Betsi Cadwaladr University Health Board, Living Well Service (LWS).

Project overview, including who was involved in the project
Similarly to post-viral conditions and myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), the diagnostic challenges of Breathing Pattern Disorder (BPD), stemming from overlapping symptoms and the absence of definitive biomarkers, contribute to its under-recognition. This, coupled with an escalating incidence, particularly in individuals with persistent post-COVID-19 symptoms, prompted the establishment of LWS (Living Well Service) following continued Welsh Government funding and adhering to All Wales Community Best Practice standards whilst filling a critical service gap.

All individuals referred to the LWS (formerly Long Covid Service) receive a thorough bio-psycho-social assessment from an appropriate member of the interdisciplinary team. Differential diagnoses and any outstanding investigations are carefully considered, ensuring any co-morbidities are appropriately managed. Following this initial assessment, patients are invited to co-produce their care through a collaborative goal-setting appointment followed by attendance at a modular self-management program tailored to their individual symptoms and needs.

To specifically address complex breathlessness, often associated with BPD, the LWS has launched a four-week intervention group. Each two-hour session, limited to eight participants, integrates education, gentle activity pacing, breathing technique practice, and mindfulness exercises. The educational component emphasises the safe introduction of exercise while managing symptoms of fatigue. Participants learn the basic anatomy and physiology of breathing, understand the biomechanical, biochemical, and biopsychosocial triggers of BPD, and explore the importance of nasal breathing for symptom management. Dedicated time is incorporated within the exercise circuit for participants to practice nasal breathing exercises.

Who was involved in this work/project?
Our co-designed, interdisciplinary service focuses on case management of complex health conditions (e.g. post-viral conditions, complex breathlessness and ME/CFS), providing assessment and diagnostics in-house where possible, individualised care and supported self-management. The team includes allied healthcare professionals (AHPs), advanced clinical practitioners and clinical psychologists to allow holistic care which makes every contact count.
Project outcomes/impact
98% of patients would recommend the LWS, and qualitative feedback demonstrates a theme of feeling validated and supported to manage symptoms more effectively, with patients benefitting from feeling ’held’ by one service. The service approach usually prevents multiple referrals to secondary care services, avoiding disjointed care approaches for people with multi-systemic and sometimes medically unexplained symptoms. 39 patients (August 2024 to January 2025) were included in a review of the BPD intervention. 79% demonstrated significant improvement in Self Evaluation of Breathing Questionnaire (SEBQ). While all patients with asthma demonstrated improvement after the BPD-focused program, the most significant SEBQ score changes were seen in those with initial scores above 25, with a mean improvement of 8.5 points. This project shows promising data for this intervention focused on supporting individuals with BPD to manage their symptoms and improve their breathing pattern.

Outcome measures to evaluate our holistic offering (Discovery Star, PROMIS, PHQ-9, GAD-7, MFIS, EQ-5D-5L) demonstrates effectiveness across a range of indicators including symptom reduction and improved wellbeing and function. 71% report an improvement in fatigue management, 59% report an improvement in symptom management, 57% report improved emotional wellbeing, 59% had reduction in depression/low mood, 50% had reduced anxiety levels, 70% had reduced cognitive fatigue symptoms, 52% had reduced physical fatigue symptoms, 42% had reduced psychosocial fatigue symptoms. Our re-referral rate is very low at 5%.
If you were to run the project again, what would you do differently?
This project has highlighted significant benefits of the four-week programme indicated the benefit in a population of individuals with likely breathing pattern disorder. This will be benefit individuals being referred with confirmed breathing pattern disorder following the roll out of the expansion of the needs-led service model. However, it would be beneficial to have a follow up review with patients 3 months after completion of the programme to critically appraise the longer-term benefits of the programme. Further research into gold standard outcome measures and evaluation on interventions for BPD is also recommended.
Advice you would have for others undertaking the same type of project.
Management of individuals with a breathing pattern disorder is complex, initial assessment will support identification of the driver of a breathing pattern disorder, this intervention is likely to be of most benefit to those with a bio-mechanical driver. Having support of all members of the multi-disciplinary team has facilitated this project to be completed and also having supportive colleagues to discuss the most appropriate methodology for a novice researcher has ben extremely beneficial.