Hospital workers in Cottingham are looking to improve services for people with haemophilia and other blood disorders using the experiences of their patients and carers.
NHS Humber Health Partnership’s Haemostasis Service plans to create a patient participation group that will discuss ways of making clinical services better and helping patients in a more holistic way.
Around 500 people living 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, says:
“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?
“Bleeding disorders can vary in nature but many are hereditary, so many of our adult patients have been receiving care from us since childhood, giving them an invaluable insight into how things work, where extra knowledge and support might help, and what else might be useful in managing their condition.
“At the same time, we’d also be keen to hear from people who are newly diagnosed or who are just at the start of their journey, as this can be a crucial time and can be particularly worrying, especially for parents of a child diagnosed with a bleeding disorder.
“We want this to be a really positive group that can make the overall experience better for patients with bleeding disorders, not just as far as clinical care but also thinking about wellbeing and support networks, and giving people with similar experiences the chance to meet, swap tips, ideas, learning and mutual support.
“Providing clinical care and medical support for the bleeding disorder itself is obviously a crucial part of what we do, but we want to look at the whole picture and understand what else we might be able to do to support our patients physically, mentally and socially.”
The Haemostasis Service provides care for both children and adults with a variety of bleeding disorders including haemophilia, von Willebrand’s Disease and platelet function defect disorders. As well as providing direct clinical care, the team also teaches patients to manage their condition in their own homes; serves as advocates when patients are accessing other parts of the health service such as surgery or dental treatment; and provides education on bleeding disorders for schools, colleges and nurseries.
The team is looking to meet with its patient group in person in an informal setting around two to three times per year. Members must already be receiving care from the Haemophilia Comprehensive Care Centre at Castle Hill or have a loved one who is, but can live anywhere within the hospital’s catchment area. If you or someone you’re caring for is being looked after through the Haemophilia Comprehensive Care Centre at the Queen’s Centre and you’d be interested in contributing, or if you have any questions about the group, please email [email protected]