Volunteers needed to assess centres
Written by Sam Wilson, November 8, 2023
Could you help improve treatment and care for people with bleeding disorders?
Next year, 31 haemophilia centres across the UK will be reviewed as part of a nationwide survey to ensure people with bleeding disorders are receiving good quality care and treatment, regardless of where they live.
Each centre will be reviewed by a team of health professionals, such as doctors, nurses, physiotherapists and psychologists and a patient representative, who is someone that has a genetic bleeding disorder or the parent of someone with a bleeding disorder.
This audit of adult and children’s haemophilia centres, called a Peer Review, is a chance to improve clinical outcomes and enhance the experience of people who use centres. People with direct experience of bleeding disorders often give valuable insights into using these services which health professionals might not have considered and are an essential part of the review team.
We’re looking for volunteers to take part in these important reviews.
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 one full weekday to carry out the review (there will be plenty of notice of the date)
- You can carry out three short training sessions of up to four hours in total before the inspection. These can be done in the evenings or weekends
- You are willing to read centre policies and other technical documents prior to the assessment
- You can consider the needs of the wider bleeding disorder community as well as your own personal situation.
You cannot review your own centre but will probably be asked to assess somewhere quite close to where you live. This is a voluntary role with travel expenses paid.
The reviews are being overseen by the UK Haemophilia Centre Doctors’ Organisation (UKHCDO). Each haemophilia centre will be measured against the Quality Standards for Inherited and Acquired Haemophilia and Other Bleeding Disorders, which will be published next year.
As well as looking at standards of care, the review team will also consider things like car parking, signage and patient information.
Reviews are likely to take place between February and August 2024. The review team will be expected to submit their notes within seven days of the assessment. The resulting report will highlight areas of best practice which could drive up standards as well as identify areas in need of improvement. Each centre receives its own report and the information is pulled together to produce a UK-wide picture of bleeding disorder care.
You can read the last Peer Review, from 2018, here.
To volunteer, please complete this application form below or email Debra Morgan, our Head of Policy and Campaigns, at [email protected].