New Midlands roadmap to improve treatment information and choice for patients with bleeding disorders
Published on 29/05/2026
Sponsor declaration
Roche Products Ltd. and Chugai Pharma UK Ltd., and Takeda UK Limited, have provided financial support for the Pan-Midlands Service Evaluation Initiative and have had no involvement in the project.
A major new Midlands-wide evaluation has highlighted opportunities to strengthen how people living with inherited bleeding disorders are supported to understand and make decisions about their treatment.
The “Bridging the Gap” report, published in May 2026, brings together insights from University Hospitals Birmingham NHS Foundation Trust, University Hospitals of Leicester and Nottingham University Hospitals.
Drawing on the responses from over 200 patients and carers, the evaluation explores how treatment information is accessed, understood and used across the region’s haemophilia comprehensive care centres (CCCs).
The findings show that while most people feel confident engaging with their clinical teams, many have trouble when it comes to evaluating and comparing treatment options. Nearly one in three respondents reported uncertainty in weighing up different approaches, despite high levels of confidence in discussion and understanding.
The report highlights a strong reliance by patients on their clinical teams as the primary source of information, with 73% of respondents identifying their multidisciplinary team as their main point of reference and 88% preferring verbal explanations during clinic visits.
While this reflects high levels of trust, it points to the need for more structured, accessible and personalised approaches to support shared decision making beyond the consultation.
There is also clear demand for more information about new and emerging treatments, with two-thirds of respondents wanting to learn more about developments in care, alongside interest in side effects, safety and how treatments work in practice.
Clinical leaders from the three centres emphasise in the report the importance of ensuring that information is accessible, meaningful and responsive to the needs of a diverse population. They note that while many people feel confident engaging with services, “there is more we can do to support individuals in critically appraising their treatment options,” and to ensure everyone can participate meaningfully in decisions about their care.
The report sets out a series of recommendations focused on improving communication, strengthening health literacy, embedding practical decision-making tools and addressing inequalities in access to information.
You can read the findings on our website.
