We are all experiencing a very difficult time as we make plans and arrangements in every aspect of our lives to cope with the COVID-19 crisis. For many of us this has brought a great change to the way we lead our lives at home and at work, and it is very stressful.
We are exposed to a lot of information which comes to us from many different sources. Some information is reliable, accurate and helpful while other information may be quite misleading. And, to complicate things further, the official advice that we should rely upon can change rapidly so we need to keep on top of that.
What’s happening at HFA?
HFA is working hard to keep things going as well as possible, and we aim to continue to provide information and support to our community. It was sad to postpone so many of our events and meetings, but we will be back with those as soon as we can. Our staff have been able to set themselves up to work remotely and with an upsurge in conference calls and emails, we remain well connected with one another, our community and our broader stakeholders.
Here at HFA we want to be sure you have access to accurate and relevant information and we have been keeping in close contact with government authorities, Haemophilia Treatment Centres and treatment product suppliers.
Reliable information about COVID-19 can be found here:
Infographic courtesy of healthdirect.
You can also refer to advice provided by your state/territory Health Department for specific information about where you live:
HealthDirect has some very helpful resources about COVID-19 if you want to download them or share them:
How are you feeling?
It is understandable that people might feel worried, vulnerable and stressed.
For those at home alone or living in their “bubble” as they are required to do, it can be very lonely. When new issues arise it might be confusing and complex to decide the best action to take.
Self isolation, quarantine requirements and social distancing impact all of us, whether it is separating us from the loved ones we would usually see regularly for company and support, or that we are working from home and being thrown together with the whole family when we are not used to that. This can be very tough and it needs adjustment and understanding.
Further, work commitments can take many people away from the loved ones they want to care for and protect at home when they are also needed in their workplace to perform an essential service to keep the rest of us safe and well.
If you need help with the way you are feeling, there are organisations that can help you.
You can contact the social worker, counsellor or psychologist at your HTC, or speak to your General Practitioner.
You can also receive help by contacting the following organisations:
How are our HTCs faring?
For our specialist health professionals at Haemophilia Treatment Centres (HTCs) and their colleagues working at hospitals around the country, it is definitely not “business as usual” as they prepare for the emerging pandemic. Many are now working in very difficult circumstances with new infection control procedures requiring changes to clinics and outpatient appointments, and where they are likely to be redeployed to other high need areas of their hospitals, provide and undertake urgent training and cope with absences when staff need to go home because they are not well. It is understandable that they might not be as available as they might have been before. There may be delays for responses to non-urgent enquiries.
It’s an important time for people with a bleeding disorder and family members and carers to be patient, to follow advice provided by your HTC and plan well ahead when this is possible.
HFA greatly appreciates the current work of our health service providers in such difficult circumstances. We recognise the enormous pressure they experience from increased workloads and uncertainty, and the personal sacrifices they are making. We are grateful for the steps HTCs are taking to meet the needs of people with bleeding disorders.
We are in regular contact with HTCs, the Australian Haemophilia Centre Directors’ Organisation, the National Blood Authority, Lifeblood (formerly the Australian Red Cross Blood Service) and suppliers of both recombinant and plasma derived clotting factor products.
Advice from HTCs is that it is very important to follow your usual management plan to both prevent bleeds and manage bleeds promptly to minimise complications. If you are prescribed regular prophylaxis (preventative doses) of factor concentrates for home treatment during this time it is imperative that you adhere to your prescribed treatment regimen and don’t miss any doses.
If you are on prophylaxis, preventing serious bleeds that may require hospital contact or admission is of upmost importance in the current climate. Treating injuries early is also key to avoid a more significant bleed that may have serious consequences.
If you are having a bleed do not delay calling the HTC for advice, particularly if you don't treat at home.
Older people and people who are vulnerable due to a compromised or lowered immune system or existing respiratory/lung conditions should minimise trips outside the house, except to seek fresh air briefly and to obtain necessities.
Treatment supplies and home delivery
Don’t forget to be proactive with your prescription needs because if you leave it until the last minute you may not be able to find a health provider at your HTC to assist.
Don’t forget to place your orders within the appropriate timeframes. Follow any changes advised by your HTC team.
We are advised by the National Blood Authority (NBA) that there are adequate supplies of both plasma derived and recombinant clotting factor and other blood product treatments at this time. There is no need to stockpile your clotting factor.
The NBA advises that suppliers have taken steps to ensure appropriate social distancing at home deliveries. Signatures may not be required so that you and the driver maintain necessary social distance. As always, the authorised receiver must be available to take delivery and deliveries are to be made within the agreed delivery window.
Don’t forget to update your delivery address if your stocks are usually delivered to your work and you are now at home.
If you are in quarantine, make sure your HTC and home delivery suppliers know so they can make appropriate arrangements for you.
Make sure your haemophilia team is advised if you are admitted to hospital for COVID -19 to ensure ongoing treatment of your bleeding disorder, and particularly if you are treated with Hemlibra which requires very specialised management.
For additional information about treatment product supply see the NBA website https://www.blood.gov.au/response-novel-coronavirus-2
If you have general health or coronavirus concerns you are advised to contact your General Practitioner for advice. Do not change medications you are currently taking or begin new medications without consulting with your doctor.
If you have concerns about treatment for your bleeding disorder or your treatment product contact your HTC team in your usual way. Do not attend the HTC unless you have been instructed to do so. If you are having a bleed and require advice do not delay calling the HTC for assistance.
To get regular updates from HFA signup up to E-News