On April 14th, the Society organised the first in a series of Webinar meetings for members via Zoom. This first meeting was with the team from the paediatric comprehensive care centre in Crumlin.
Below, there are detailed notes of the questions and answers from the session for easy referral for those who attended and those of you who were unable to participate.
Our thanks to Dr. Nolan and her team for an excellent and very well attended meeting
Haemophilia & Covid-19: The Implications for Haemophilia Services’| 3PM, Tuesday April 14th, 2020:
Presentation and questions answered by the team from the Haemophilia Comprehensive Care Centre, Children’s Health Ireland, Crumlin
Dr. Beatrice Nolan, Paediatric Consultant Haematologist
Dr. Kirsten Fitzgerald, Dentist
Ms Paula Loughnane, Physiotherapist
Ms. Caitriona Ferry, Nurse Specialist
Introduction from Dr. Beatrice Nolan
All non-essential appointments in Crumlin has been cancelled over the last three weeks.
There is no theatre list every day, there is emergency surgery. There are no orthopaedic clinics, but they are holding their fracture clinic.
If people/members need to contact Crumlin the team are there for assistance and support every day but on a reduced service. This is to reduce the possibility of staff being infected with COVID 19 and having to go on sick leave and to maintain the service. About a quarter of the administrative staff are in Crumlin every day. There is one haemophilia nurse in per day instead of four and there are three junior doctors working on the haemophilia team.
If a child has a bleed they can come into Crumlin. If this happens, the parent needs to ring Crumlin first to inform the centre that they need assistance in the hospital. People will be advised of the changes to the hospital. For example, the Day Ward is not taking children with haemophilia right now or children with sickle cell disease. A day Ward has now been open on the St Michael’s Ward. Just remember if you need to come in just ring ahead. During the daytime Monday to Friday you will be assisted by Emma Murphy, our Haemophilia Secretary or you can talk to a Haemophilia Nurse specialist or to the Haematology Doctor. In the evening time you ask for the haematology registrar on call who will direct you where to go. People will need to tell the hospital if they have/had symptoms of COVID-19, for example a fever or a cough.
Question: Are there any additional risks if a child with haemophilia or a child with an inherited bleeding disorder gets COVID-19?
Answer: “No there is no additional risk. The risks seem to be in older people. In the majority of children with haemophilia and other bleeding disorders there is no additional risk of acquiring COVID-19 compared to a child without Haemophilia and there is no risk of the disease being any worse in a child with haemophilia who is infected with COVID-19 so it is the same as any child under the age of 18.”
Question: What should the parent do if the child has a dental emergency?
Answer from Kirsten Fitzgerald (Dentist): “Our service is running; it is just running very differently. We are there in spirit if not in person. And our phone service in Crumlin has an answering machine and the admin team are being very good at listening to you and responding to those messages during the week as we would usually. Our first piece of advice is to not panic if somebody has a dental emergency, there are pathways and we just need to get the right people in place to help in the best way that we can is what’s important. So, in the first instance, just like always, we would say to you contact your local dentist and that is usually somebody in the HSE clinic and they are running services for children and adults who are medical card holders with emergencies. If there is something that they can’t manage then they will be able to get in touch with us and of course families are welcome to phone Crumlin and leave a message at any stage. And maybe even the best way if there is really something urgent is to contact the haemophilia treatment team and they can contact me, and I am available to respond to those type of time dependant emergencies. We’re having to use a lot more things like pain relief and antibiotics; we may have to schedule to do more extractions then fillings because of the risk of generating all that spray and aerosols that we generate in dentistry, so our practice has changed enormously. We really want people to know the service is there and we are available to respond and just get in touch with us or with your local dentist in the first instance.”
“Summary: If the local dentist can’t sort the emergency then contact the haemophilia team who can contact Kirsten Fitzgerald. People can also ring the switch directly in Crumlin and they can be put through to the dental reception and most of the time there will probably be a voicemail because the staff are being re-deployed to a lot of other areas of Dublin at the moment. But we will do our best to respond to you as quickly as possible. Obviously if it is something like a trauma or a knocked-out tooth then leaving a message does not apply, -you got to get in a bit faster.
(Note- a written protocol for Dental emergencies in people with Haemophilia and inherited bleeding disorders has just been completed by Kirsten Fitzgerald and Alison Dougall and is posted on the Society website and in the most recent I.H.S. E- Zine)
Question: Can you comment on the supply situation for Elocta?
Answer: “For the recombinant factors, Elocta and Alprolix there is no issue with supply. We are not expecting any problems with the supply of these products. This also applies for hemlibra. TCP has been delivering a five-week delivery to patients so people should have an extra two weeks of stock of Factor in their homes. TCP are ensuring continuity of delivery. In fact, because of Brexit, for the last year we have been looking at the supply situation and making contingency plans so we increased the amount of Elocta and Alprolix being kept in the country at any one point so its higher than what it would have been a year or two ago. Crumlin also has a sufficient supply of Factor so if people need to come in Crumlin, they have what is necessary so there is no issue with supply for recombinant factors or Hemlibra.”
Question: Our Pharmacy cannot supply sterile wipes anymore and I need them for my child who has a port. I had to go through the HSE to get them and they only had a small supply left. Do you think the supply of sterile wipes will be problem in the next couple of weeks?
Answer: “TCP are delivering wipes to patients with their Factor as a package. If you would like to avail of this package, then please contact Caitriona Ferry in Crumlin who will contact TCP on your behalf to add you to this offer. This service is open to everybody and it has been for about 18 months now so if anybody needs and wants sterile wipes as a package with TCP with the Elocta or Alprolix delivery that facility is available.”
Question: Is taking an immunosuppressant an added risk for young people?
Answer: “Yes, it is an added risk for both young and old people so for children and adults on immunosuppressant agents, their immune system is suppressed so they are at increased risk. But it is not related to the underlying haemophilia. Crumlin have been liaising with Italy and in children with leukaemia who are on chemotherapy (which is serious immunosuppression), there have seen very few infections with Covid-19 in those children either in Italy or in Ireland. The paediatric risk does seem to be lower in terms of getting a severe infection. So, the fact that Crumlin is a separate paediatric unit I think is good because it means that we are not exposed to adults with COVID-19. In summary, anybody who is on immunosuppressants is at increased risk of any infection although the experience so far is that children seem to be at a smaller risk of severe COVID-19 infection.”
Question: How should children be kept active during this time of lockdown?
Answer from Paula Loughnane, (Physiotherapist): “ It is important for children to stay as active as possible, and I know it is a little more difficult when they are spending a lot of time indoors but there are lots of games and activities that can be done indoors and don’t be afraid during this lovely weather to get out there and get into your gardens or parks for walks and bike rides while maintaining your social distancing of 2 metres. There are infographics that I can provide the Irish Haemophilia Society with regarding the amount of exercise children should be doing and looking at the different age groups because it does vary from age to age so if people are looking for that kind of information I can send it to the I.H.S so that it can be put onto the website.
But ideally children over 5 years of age should be doing at least an hour of moderate to vigorous exercise every day and it is important that they try to maintain those physical activity levels, to maintain their mental health as well as their physical health while they are isolating. This will help to protect their joints and muscles. It is important that kids have an outlet and that they have the opportunity to play and be active. There are a couple of websites that are really helpful if kids are indoors, for example, Cosmic kids, is a programme that’s run primarily for younger kids through YouTube, where kids participate in different yoga classes along with cartoon characters. P.E with Joe Wicks is excellent; he runs a 30-minute physical activity session every morning from 9am – 9.30am that is also streamed live on YouTube.
Thankfully most of the kids have very little arthropathy so the vast majority of the kids and teenagers with haemophilia can safely participate in P.E with Joe, but if you have specific concerns don’t be afraid to contact me (Paula Loughnane), if there is a suspected bleed or if someone has arthropathy in a joint and I can tell you how adapt things for them.”
Question: What is the situation without patient clinics?
Answer: Beatrice Nolan: “The clinics are all cancelled so we are trying to run telephone clinics. They are not a replacement for coming in and seeing everybody, but it is the best we can offer at the moment. Emma, Haemophilia Secretary in Crumlin, has been ringing people ahead of their scheduled appointment to ask if they are happy to participate in a telephone clinic appointment. We can only do what we can do on the phone, we are limited but it is to touch base with everybody.
We are trying to do it as the clinics on a timely basis, so for example if you have an appointment for next Monday Emma will be ringing you over the next couple of days to ask if happy for us to ring you to do an assessment over the phone. We have clinics Monday, Tuesday, Wednesday and Friday, we are trying to do this for all the clinics. If you need blood tests, we can schedule a blood test but really, they are only taking emergency phlebotomy. The blood test area is open, but we would have to almost make an appointment so if you need an urgent blood test during the day the phlebotomy is open for that, but it is not open for routine, non-urgent blood tests. If you urgently need a FVIII or FIX trough level done Crumlin can do that but its only for more urgent scenarios.
There are some people for whom telephone clinics will not work because they will need a blood test done (new patients for instance) During the telephone clinic we will ask you the same questions as if you were in the clinic and we will be doing a letter to your GP and to yourself as we always do, and you will be getting a follow up appointment. We are trying to keep going week by week. If anything is identified over the phone that needs a follow up in the hospital we will organise that, we can organise referrals to other services but the other services are operating on the same basis as us so everything that is not considered urgent or essential is being postponed.
The hospital is looking into video consultations but there are a number of different companies and even in the HSE there are 2 different systems for video links/consultations and because this is likely to continue for quite some time the hospital will hopefully set up these video consultations. People can agree or disagree to participate in the video consultations. If you disagree though it does mean that we don’t know when we can assess you as we don’t know when normal service or clinics will resume, no one will want to come into a waiting room with 20 other families. When things are back to normal they wont be back to normal the same way they were before but it might actually be better, there wouldn’t be a queue in the waiting room, people will be given appointments in a different way but for the moment all we can do are the telephone consultations and hopefully down the road video consultations.
If you need to come to the hospital then ring Crumlin and we will arrange a way for you to come in, if a child needs to be seen a child needs to be seen and we can facilitate that”.
Question: When we get over this pandemic will there be any changes in the service long term as a result of this because of things like telemedicine?
Answer: “I think when the patient portal comes in and if we can get video consultation as well, there will be times where people won’t have to come into the hospital for a clinic that we will be able to do a lot over the phone. But I guess you can’t do a physical examination over the phone and you can’t do a blood test so there will still be circumstances when people will have to come in. In Scotland they have been trying the last couple of years to get video consultation implemented and the last few weeks the amount of these video consultations has increased by 5000%. It is something we will continue to do in the future where possible, so in the past where people who had to come in because there was no other option but now there might be an option. This is a period of fine tuning, we are having to do it now because we have no other option and we are finding that the telephone consultations are longer and harder and we can’t do as many people as we can do face to face for some reason. When this is all over, we will do an evaluation with people who had the telephone consultation to see their point of view but from our end they are longer and tougher, we don’t have a reason for this. Instead of seeing 30 people on a Monday afternoon we will probably spread the telephone consultations over the course of the week as we won’t be able to call 30 people in one afternoon.”
Question: Going forward do you see it being feasible to have bloods taken at a local hospital and the results forwarded to Crumlin?
Answer: “No because it is important how the sample is processed before it gets to Crumlin. There are specialised tests that can only be carried out in Crumlin. There are some tests that your GP cannot do because the GP sample cannot get to the hospital in the required time. If the tests cannot be done in Crumlin, then they would have to be processed in the local hospital in a certain way before being processed in Crumlin or else the test is just a waste of time. So, some things are possible locally but not everything. For example joint scores to assess prophylaxis in preventing joint damage, we recommend an annual attendance to the hospital to do this as we can’t assess the joints remotely and your local physiotherapist wouldn’t be able to do that so you would need to come into the hospital.”
Paula Loughnane: “Similarly if somebody has a bleed a limited exam can be carried out remotely or over the phone but that does not substitute for a physical exam and subtle changes and subtle synovitis cannot be detected by video link. I have to put my hands on the child, physically examine them and they may need an ultrasound as well as follow up. There are certain things we can do remotely, for example if someone needs an exercise program to be designed, I can do that remotely but there are certain instances where I need to physically see the child.”
Question: Any impact from the pandemic on clinical trials?
Answer: “we were due to start a couple of clinical trials, but we have put them on hold. We are hoping to have a trial in the Autumn for the new long acting FVIII bound to von Willebrand factor. We have done the initial parts of the work for that trial, but it looks like anything that hasn’t been started yet is on hold so there are very few children or teenagers on active trials at the moment. The clinical research centre has closed temporarily, and people are working from home. For the people who are on clinical trials we are keeping in close contact with them and their parents and the sponsors. It is more difficult because we are trying to a risk assessment to see the risk benefit ratio. Clinical trials require a lot of hospital visits. We don’t have many people on clinical trials right now and we won’t be starting any for the foreseeable future.”
Brian O’Mahony: “we have had three adults in Ireland treated with Gene Therapy for FIX deficiency. They have gone ahead, all three have been treated.”
Question: Have you found telemedicine more or less efficient?
Answer: “It is a good way to keep in touch, but it is taking longer. In person you can assess someone as they walk into a room through nonverbal communication whereas the teleconference is all verbal through questions and answers.”
Question: Are there any children who are on Hemlibra and if so, how are they getting on?
Answer: “We were hoping to change one or two people a month with FVIII deficiency who wanted to from Elocta to Hemlibra and that is more difficult now as it does require four or five visits, so it is harder to travel around the country to Dublin. The change therefore is going more slowly than we had anticipated. If anybody who is due in to change in the next couple of weeks has decided they would rather not, then let Crumlin know. If you want to come in that is fine also. Just let us know as we can give the slot to someone else if you don’t want to travel.”
Question: How many children with inhibitors are on Hemlibra and how many children with FVIII deficiency are on Hemlibra?
Answer: “There are currently three children with inhibitors on Hemlibra and there are eight with FVIII deficiency on it. We have, hopefully, another two children changing over in the next few weeks. It is a slower process, but we are still continuing to offer it to the patients. If anyone wants information about Hemlibra they can contact Crumlin by the haemophilia department email, and we can send out an information pack on Hemlibra.”
Beatrice Nolan: “If anybody has changed phone number or address then please let us know because we need the correct phone number to do the telephone consultation. Emma’s (Haemophilia Centre Administrator) number is 409 6913. Please contact Emma with up to date contact details. We hope to be back up and running in the next couple of months so re-scheduled appointments will be re-scheduled for 6 months down the road. There is also only a quarter of the administrative staff in everyday so posting letters out will take longer.”