The Society are very concerned about the temporary relocation of the H&H assessment unit to the Clinical Research Facility one floor above. We are working with the team at the National Coagulation Centre (NCC) to reverse this move as soon as possible.
Here is the message I sent to the NCC team:
‘The Irish Haemophilia are extremely concerned about the temporary relocation of services from the H and H Assessment unit to the Clinical Research facility. The H and H unit and the HHAU were, of course, designed to operate in tandem and the HHAU is invaluable in allowing for triage, rapid assessment and treatment of bleeding episodes and treatment and monitoring of factor levels before and after day or surgical procedures. It prevented the situation where people with haemophilia and other inherited bleeding disorders had to spend lengthy periods waiting at the emergency department with potential for delay in diagnosing and treating bleeding episodes, leading to the possibility of further damage. The staff at the HHAU are very experienced in haemophilia and the requirements for treatment. Access to the H and H ward was lost for people with inherited bleeding disorders during the COVID pandemic and only regained after a long struggle and significant advocacy from the haemophilia team at the NCC and the Society. Access to the HHAU was also limited and only in more recent times, available again outside hours.
There has been significant concern expressed by members since the announcement of the temporary move was made. Members are upset and I know this will be an agenda item now, not only at our Board meeting on February 18th, but at our Annual Conference and AGM on March 7th and 8th.
It should be remembered that the H and H ward derives the name from “Haemophilia and Hepatology”. The tragic death of so many people with haemophilia from HIV and /or Hepatitis C in the past from contaminated blood products remains a part of the reality this community lives with. It is also the main reason why the H and H ward and HHAU were established with specific funding and sustained advocacy from the haemophilia clinical team at St. James’s and the Society.
While we acknowledge that overcrowding can be a problem, the feeling in our community is that they have suffered enough in the past and the new dawn ushered in by the H and H ward and HHAU should not be jeopardised once again.
We want to see restored access to the HHAU for people with inherited bleeding disorders as soon as possible.’
Here is the response from the NCC team:
‘Dear Brian,
Thank you for your email.
I recognise the importance of continuity of care, access to specialist services and the historical context that makes this issue particularly sensitive for our patients and appreciate the time and care taken to share this perspective.
Decisions regarding clinical service locations and operational arrangements are not within my direct control. However, please be assured I will escalate these concerns and share your email with the hospital’s senior management and NCC team will continue to advocate for arrangements that prioritise patient safety, dignity and timely access to specialist care.
Thank you again for bringing these concerns to my attention.’
Our message should assist the efforts to get access to the HHAU restored for people with inherited bleeding disorders as soon as possible.
We will continue our efforts until this is achieved.
– Brian O’Mahony, Chief Executive