Would you like to contribute to the improvement of treatment and care for individuals with bleeding disorders in the UK?
Starting February next year, an extensive assessment of 31 selected haemophilia centres is scheduled to take place across the UK. The main objective is to ensure that individuals with bleeding disorders are receiving high-quality care and treatment, irrespective of their location.
The review teams will be made up of healthcare professionals, including doctors, nurses, physiotherapists, and psychologists. Moreover, each team will also include a patient representative, someone either living with a genetic bleeding disorder or a parent of an affected individual.
Alongside the other bleeding disorder societies, we are helping to find volunteers willing to participate in these crucial audits, referred to as “Peer Reviews”. The outcomes of these reviews will help to improve the quality of care being delivered to people accessing the centres and it is vital to have people with direct experience of bleeding disorders being part of that process.
In addition to evaluating the standards of care, the review team will also be considering each centres accessibility (parking facilities and signage) plus any information material that is available to patients.
You could be part of the review team if:
- You have a genetic bleeding disorder or are a parent of someone with a genetic bleeding disorder.
- You are available for a full weekday to carry out the review (you will be given notice of the proposed date).
- You can commit to three short training sessions, totalling up to four hours, before the inspection (these can be scheduled in the evenings or on weekends).
- You are willing to consider the needs of the wider bleeding disorder community, in addition to your own personal situation.
Please note that you cannot review your own centre, but you will likely be asked to assess a centre near your location. This is a voluntary role, and travel expenses will be fully reimbursed.
The reviews are being overseen by the UK Haemophilia Centre Doctors’ Organisation (UKHCDO). Each haemophilia centre will be assessed against the Quality Standards for Inherited and Acquired Haemophilia and Other Bleeding Disorders.
All the reviews are scheduled to take place between February and August 2024, with the final report expected by the end of that year. This report will highlight areas of best practice that can improve standards and identify areas in need of improvement. Each centre will receive its own report, and the information will be consolidated to create a comprehensive nationwide overview of bleeding disorder care.
To volunteer, please complete the application form at the bottom of this page or email our Director, Alan Martin, at firstname.lastname@example.org.
Your participation can make a significant difference in the lives of those living with bleeding disorders in the UK. Join us in the effort to ensure the highest quality care and treatment for all.
To register as a Patient Representative, please complete the application form below: