Pulmonary Hypertension (PH) is an incurable, serious condition, with a major lifelong impact on patients. Diagnosis and treatment is complex, and requires high-cost drug therapies, delivered through an arrangement of specialist and shared care centres.
Specialised commissioning and PH care have experienced fast-paced change over the last 15 years. Treatment and knowledge of the condition have also evolved dramatically, as have the needs of patients and stakeholders.
In its 15th year, the Pulmonary Hypertension Association (PHA UK), recognised there was an opportunity and need to develop its role and identity. As the only charity in the UK to solely support PH patients and the PH clinical community, it needed to adopt a more strategic approach to better support its stakeholders.
Monmouth Partners carried out the largest-ever independent assessment of the PH service in the NHS. Accompanying analysis set out how the PHA UK could evolve its support. The work reflected the views, experiences and input of patients and carers, as well as clinicians and healthcare professionals.
Our work highlighted areas of strength and weakness in the care environment, political landscape and patient and carer needs. We set out a focused set of short and long-term recommendations for PHA UK. These included prioritised action and ambitions for the charity, such as immediate practical support gaps and structural and political changes. Monmouth is continuing to work with PHA UK to help it support and shape the future of PH care in the UK.
Pulmonary Hypertension Association UK • Registered Charity Number: 1120756