For over a year now, volunteers comprising of patients, parents/carers, HCPs and other advocates from the bleeding disorder community have been working with the Quality Review Service to run peer reviews of the UK’s haemophilia centres.
The reviews have been published today and can be found here: https://qualityreviewservicewm.nhs.uk/reviews/
Commenting on the reviews, Clive Smith, patient and chair of The Haemophilia Society, who was also involved in some of the reviews themselves said:
“We welcome the publishing of the reviews and hope that it supports the bleeding disorders community and the treatment available. We know the service across the UK is not the same, and there are differences depending on the centre, but the core objectives of support and care remain.
As the UK patient voice, we have welcomed the opportunity to be part of this process, especially as our core mission is to empower the community, educate and support members to advocate for a better future for all.”
At the end of May, an overview report of all the findings will be published. This is expected to highlight general inconsistencies in haemophilia care which will provide The Haemophilia Society with a clearer focus on where we should advocate on behalf of our community for increased standards of care.
Of the overview report, Dr Kate Khair, vice chair of The Haemophilia Society, said: “We look forward to seeing this report and implementing it’s suggestions along with haemophilia centre staff, to further improve the experience of care that people with bleeding disorders and their families receive.”