A pioneering UK-based study jointly funded by Bournemouth University and Lewis-Manning Hospice Care has shed light on the challenges faced by individuals living with advanced liver disease, their carers, and the healthcare professionals supporting them. The research highlights the urgent need for more accessible, consistent, and empowering care.
Led by PhD researcher Cathy Beresford and supported by a dedicated public involvement group, the study explored the lived experiences of patients, carers, and clinicians. It found that while some individuals had access to excellent support, many struggled with complex self-care, navigating confusing health systems, and inconsistent levels of care depending on their location.
“This is such a great springboard to launch the development of our clinical services, as the improvements align with the insight and recommendations gained from this study.” said Laura Adams, Clinical Director at Lewis-Manning Hospice Care advised. “It highlights the importance of early engagement with palliative care and the requirement for a compassionate and integrated health and social care work force to support patient empowerment.”
Key findings from the study include:
- Complexity of Self-Care: Managing liver disease was often challenging due to unpredictable symptoms and lack of support.
- Variability in Services: Access to specialist and high-quality services varied significantly, leading to unequal care.
- Healthcare Professional Impact: Compassionate, knowledgeable professionals made a positive difference, while poor communication led to negative outcomes.
- Crucial Role of Carers: Carers often felt undervalued despite being essential in managing daily life and emotional wellbeing.
- Communication and Empowerment: Honest, timely communication helped individuals and families make informed decisions and feel in control.
- Public Involvement: A dedicated group of patients and carers shaped the research, contributing to the publication of a peer-reviewed paper Beresford et al., 2024.
Recommendations from the study include:
- Ensuring equal access to specialist liver care across the UK
- Training healthcare professionals to better support patients with liver disease
- Promoting integrated, joined-up care across services
- Involving patients and carers in decision-making processes to deliver person-centred care
The findings serve as a call to action to healthcare providers and policymakers to address disparities and empower those affected by liver disease.
For further information, please contact: Cathy Beresford
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