The NHS Humber Health Partnership's Haemostasis Service is planning to establish a patient participation group. This group will discuss strategies for enhancing clinical services and providing more holistic support to patients. The initiative aims to leverage the invaluable insights of those directly affected by these conditions.
Approximately 500 individuals across Hull, East Yorkshire, North and North East Lincolnshire are currently under the care of the Haemophilia and Bleeding Disorders Team, based at the Queen’s Centre, Castle Hill Hospital. Professor of Haematology, David Allsup, highlighted the importance of patient involvement.
“"We are always looking for ways to improve our services and as many of our patients have conditions that require a lifetime of medical care, who better to help us understand what else people may need or where we could make our services better than our own patients?"
Professor Allsup emphasised that many adult patients have received care since childhood, providing them with extensive knowledge of the service and areas where additional support could be beneficial. The team also wishes to engage with newly diagnosed patients and their families, recognising the critical and potentially worrying nature of such diagnoses.
The group aims to foster a positive environment, improving the overall patient experience beyond clinical care to include wellbeing and support networks. It will offer a platform for individuals with similar experiences to connect, share tips, ideas, and mutual support.
The Haemostasis Service caters to both children and adults with various bleeding disorders, including haemophilia, von Willebrand’s Disease, and platelet function defect disorders. Beyond direct clinical care, the team educates patients on self-management, advocates for them within other health services like surgery and dentistry, and provides educational resources for schools and nurseries.
The service plans to hold informal in-person meetings for the patient group approximately two to three times per year. Membership is open to current patients of the Haemophilia Comprehensive Care Centre at Castle Hill or their loved ones, residing anywhere within the hospital’s catchment area. Interested individuals can contact the service via email for more information or to express their interest.
