On Friday 30th November, the Scottish Inherited Bleeding Disorders Network (SIBDN) hosted an “Annual All Network Event” in Glasgow.
It was a tremendously informative day with a wide range of very interesting speakers and content.
The purpose of the event was to provide an update on the work that the SIBDN has been involved with in the last 12 months.
Alex attended and took some notes which can be found below.
Work is well underway on a patient handbook that covers diagnosis through to the management of bleeding disorders. It will be for nurseries and clubs etc. and will have illustrations to make it reader-friendly. It will contain headline figures on haemophilia and will include a section on dental care and women who bleed. It was noted that the handbook will have the potential to have value beyond Scotland and there was a strong emphasis to ensure that it’s not rushed and that it’s done well. Once complete, a hard copy and online copy will be available.
We received an update on the Psychology Pilot from Gráinne O’Brian who stated that there is an agreement in principle to extend funding of the pilot to April 2020. The pilot is trying to take a proactive approach, not a reactive approach with therapy. There was an acknowledgement that just under half of the referrals are for severe haemophilia patients and that there could be more done on chronic pain management, as a service. It was agreed that the haemophilia centres value the service.
Andrew Brewer, oral surgeon from NHS Greater Glasgow and Clyde, talked about dentistry and bleeding disorders. The dental group currently gets questions from, and gives advice to, dentists. There was an acknowledgment that there is currently a lack of consistency with information being provided to dentists, nurses and patients and that more educational work needs to be done to inform dentists and patients in this area.
The core message was that “healthy gums don’t bleed.”
Key Performance and Outcome Indicators
Catherine Bagot from the Glasgow Centre spoke on the purpose of KPIs in haemophilia which boiled down to, 1) Is the best patient care being provided? 2) Is the expensive product being used effectively and efficiently? Outcome measures included few spontaneous bleeds, reduction in joint damage and a quality of life. There has been work underway on changing to more meaningful KPIs and there will likely be ongoing minor changes.
There was an afternoon session for healthcare professionals that covered the National Haemophilia Database, Genomics in the Haemophilia Clinic and Clinical Trials.
Thank you to the SIBDN for organising the event.
For more information about the SIBDN, please visit their website.