Update 2020

CEO Update :: October 23, 2020 ::

Comprehensive Care services at St. James’s Hospital

The Covid-19 pandemic has had a significant impact on the infrastructure for treatment of haemophilia and other inherited bleeding disorders in St. James hospital. The H and H ward, which was the primary unit for in-patient admissions for people with haemophilia was used initially as a Covid-19 ward and is now used as an assessment unit for patients who may have Covid-19. This is entirely understandable given the need for single rooms for those with Covid-19 and the relative shortage of single beds in St. James\’s Hospital.

Since the start of the pandemic, people with haemophilia who require in-patient stay have been admitted to various wards in the hospital. This is not ideal as the nurses who are very familiar with treating haemophilia and with issues such as the requirement for timely infusion of factor concentrates are not available routinely in those other wards. Of the two dedicated dental treatment suites for people with bleeding disorders at the National Coagulation Centre (NCC) in St. James’s, one suite was sequestered for other use during the pandemic. This has led to restricted capacity during the pandemic for in person dental visits and procedures due to the longer waiting time required between patients as many dental procedures generate aerosols and the rooms have to be decontaminated between patients.

Despite this, the dental team provided an outstanding virtual service during the pandemic to date and saw many patients on an emergency basis. Given the lack of access to hospital beds and the understandable reluctance of the hospitals and indeed the patients to avoid admission where possible, it is no surprise that there has been a significant increase in the waiting list for both orthopaedic procedures and other surgeries in people with haemophilia.

The Society have been acutely aware of these issues as indeed have the National Haemophilia Council. On October 12th, the Council represented by Chairperson Brian Fitzgerald, Dr. Niamh O\’Connell and I had a very productive meeting with the Chief Executive of St. James\’s Hospital, Mary Day during which all of these issues were discussed in detail. We pointed out the absolute importance of the H and H ward to the haemophilia community in the long term, the importance of having adequate dental care and preventive treatment and the ongoing requirement for orthopaedic surgery.

St. James\’s are dealing with many challenges at the present time including a shortage of single rooms. A rapid build process for more single rooms has been initiated. Building work has also been almost completed on a new entrance to the H and H ward which will give people with haemophilia and other patients separate access to the assessment unit in the ward. This work is scheduled to be completed by October 27th.

The meeting was very productive, and the following commitments were made by St. James\’s Hospital:

People with haemophilia will have access to the H and H ward again in the future when the worst of the pandemic is over or when the rapid build single rooms are available.

In the interim, a ward will be designated where people with haemophilia will be admitted where possible which would give access to the specialist nursing staff

The second dental suite will be returned to the haemophilia service within two weeks

A working group is to be established to co-ordinate access to surgery for people with haemophilia. Since the meeting, it has been confirmed that this group will be chaired by Mary Day personally

We will keep members updated on progress with these issues.

Hospital Admissions

We have been made aware that there have been some occasions over the past months where people with haemophilia or other inherited bleeding disorder were admitted to hospitals which are not haemophilia treatment centres (any hospital other than St. James, Children’s Health Ireland, Crumlin, Cork University Hospital and Galway University Hospital). On some of these occasions, the person did not inform the National Coagulation Centre or their haemophilia treatment centre. This is dangerous. You should not assume that staff in other hospitals are familiar with haemophilia, or other inherited bleeding disorders.

Always let the staff at the NCC or your haemophilia treatment centre know immediately if you are being admitted to another hospital for any reason.

Make sure the admitting hospital contact the NCC and keep your bleeding disorder alert card and your diagnosis card provided by the NCC or CHI, Crumlin with you and show them on admission. Do not assume that the admitting hospital will contact the haemophilia centre for advice – let your haemophilia centre know if you are being admitted elsewhere

Haemophilia B quantitative study

A team from the NCC and Trinity College Dublin, including psychologist Patricia Byrne will be carrying out a survey among people with haemophilia B on their experience of using extended half-life Factor IX concentrate since 2017. It is important to understand the perspective of people with haemophilia B on this generation of treatment and to look at the outcomes of treatment. We ask any member contacted in relation to the survey to participate.

October Conference

Our October conference, held virtually last weekend, featured excellent presentations from Prof. Mike Makris from Sheffield on Gene Therapy, from Dr. Niamh O Connell and Dr. Beatrice Nolan on Hemlibra and then a Treatment discussion panel on Gene Therapy, Hemlibra and Extended half life factor concentrate. The speakers at the panel were David Flanagan, Colm Walsh and I. On Sunday morning we had a talk on maintaining a healthy diet during a pandemic. T

his was followed by an innovative session with Physiotherapists Sheila Roche, Paula Loughnane and Mark Mc Gowan. This session featured a short talk followed by participants being divided into two groups on zoom where the physiotherapists led them through an exercise session using Therabands which had been mailed to registered participants by the Society. The session was very enjoyable, and tiring. It clearly demonstrated the wide range of exercises which can be done at home using only a Theraband and a chair. This will be even more important as we have now entered another 6 weeks of Level 5 lockdown.

It is not necessary to have expensive or complex gym or exercise equipment in order to exercise properly at home. This session followed on from a successful pilot programme for some older adults with severe haemophilia earlier this year where an 8 week exercise programme, supervised by the haemophilia physiotherapists, was carried out on Zoom. We hope to roll out this programme to other members where there is interest. Those who were not at the conference or at the session on the Sunday morning missed a great opportunity to clearly see how easy it is to exercise safely and simply at home.

We have posted a video of the physiotherapists supervising the exercise session on the website – you can watch it here. If any member is interested in acquiring a Theraband, they can contact the Society, and do let us know if you would be interested in joining an exercise class in the future designed and supervised by the haemophilia physiotherapists.