The SACRed Project: helping women and girls access the care they need

Women and girls now make up the majority of people in the UK with a diagnosed bleeding disorder.

However, women are far more likely to be diagnosed as adults and studies show that on average women with bleeding disorders are diagnosed 10 years later than men. Once they do get a diagnosis the quality of and access to specialist bleeding disorder care for women and girls varies considerably across the UK.

We believe outcomes and standards of care can and should be better which is why we have launched the SACRed Project to improve access to treatment and care for women and girls with bleeding disorders across the UK.

This project will use existing studies, submitted evidence, focus groups, surveys and centre visits to map the current care landscape and set out ways in which it can be improved. Evidence collection and research will be taking place over the next six months, with most visits and focus groups this autumn, the final report planned to be published in mid to late 2024.

Call for Evidence

We have launched a call for evidence to collect data, stories and studies we need to inform this work, which will run until 23 November 2023.

We are looking for evidence from women and girls with bleeding disorders, their families, healthcare professionals, NHS and government organisations and any other stakeholders to help inform this work.

Below are the set of questions to guide submissions for the call for evidence. This is just a guide, you do not need to answer every question.

What is the real-world experience of women and girls living with a bleeding disorder in the UK?
What are the barriers they face in referral and diagnosis and what is the impact of delayed diagnosis?
What are the current standards of care for women and girls with bleeding disorders in the UK?
What does best-practice in treatment and care for women and girls with bleeding disorders look like?
To what extent are they accessing the full range of available treatments and best standards of care?
How does care vary regionally within the UK and compare internationally?
To what extent are women and girls getting access to gynaecological care and what is the impact of delayed referral to these services?
What diagnostic tests are being offered to women and girls that may have a bleeding disorder and what is the impact of restricted access to level tests and genetic tests?
To what extent are women and girls provided with care from combined clinics in the UK and to what extent do they improve outcomes?
How suitable are the current processes for licensing, procurement and commissioning of treatments for bleeding disorders in delivering the best treatments to women and girls? To what extent are they being offered the best treatments and treatment regimens?
How effective is joint decision-making between patients and clinicians?
What is the impact of bleeding disorders on fertility, pregnancy and childbirth? How do we improve access to care and improve outcomes?
How do we improve access to the best standards of treatment and care for women and girls?

Please use the form below for any submissions, questions or comments or email [email protected].

Taking Part

Use this form if you would like to be involved with the SACRed Project, share your story or receive updates on this work.

Acknowledgements

We are grateful to Octapharma, LFB, Sobi, Takeda and Roche who are sponsoring this project.