Covid-19 Frequently Asked Questions for people with thalassaemia

Frequently Asked Questions

Q. I have beta thalassaemia minor/ trait; should I be classed as being at the “highest risk”?

If you are a carrier of beta thalassemia (minor/ trait), this should not make you more susceptible than the general population in developing complications of the coronavirus.  However, we suggest you check the government’s list of conditions, in the event you may fall into another category that may then put you at greater risk (for example, if you are aged over 70, or if you are pregnant, etc.)

The list can be found here:

If you feel you should or should not have been identified as being at the “highest risk” after looking at the government’s criteria; please contact your GP for more clarification.

Q. I have alpha thalassaemia minor/ trait; am I at the “highest risk”?

If you are a carrier of alpha thalassemia (minor/ trait), this should not make you more susceptible than the general population in developing complications of the coronavirus.  However, we suggest you check the government’s list of conditions, in the event you may fall into another category that may then put you at greater risk (for example, if you are aged over 70, or if you are pregnant, etc.)

The list can be found here:

If you feel you should or should not have been identified as being at the “highest risk” after looking at the government’s criteria; please contact your GP for more clarification.

Q. My mum received a text from the Government stating that she is at the “highest risk”. She has thalassaemia trait. Does she need to self-isolate/ shield?

Having thalassaemia trait should not put you at the “highest risk”.  However, there may be other risk factors that can (for example, if you are aged over 70, or if you are pregnant, etc.)

The list can be found here:

If you feel you should or should not have been identified as being at the “highest risk” after looking at the government’s criteria; please contact your GP for more clarification.

 Q. Do all people with beta thalassaemia major fall into the “highest risk” category?

The government identified a list of conditions which they believe put people at the “highest risk” of developing severe complications from COVID-19.

The list can be found here:

However, we are aware that there is a lot of misunderstanding when it comes to those who are considered to be at the “highest risk” within the thalassaemia population. Please remember as this virus is new and information is evolving rapidly, this data is unclear. The National Haemoglobinopathy Panel (NHP) has sought to provide clarification.

NHP outlined that not all people with transfusion-dependent thalassaemia and non-transfusion dependent thalassaemia will be at the highest risk of developing severe complications due to COVID-19.  There is a specific criterion in which haematologists have identified what makes some people with thalassaemia more at risk – please read the document on our website to view this document. We have summarised the NHP guidance below.

People with thalassaemia who have been identified as being at the “highest risk” are those who are:

(1) Patients with iron overload (T2* <15 ms, previous or current impaired LV function or other cardiac complication related to thalassaemia, severe iron overload LIC >15 mg/g DW or ferritin >3000 mg/L)

(2) Patients who have had a splenectomy AND have another risk factor for complications, in other words another health condition, such as diabetes.

Patients in these groups have been identified as being at the highest risk of developing severe complications due to coronavirus. This is why they are being advised to “shield”. These individuals should have been contacted by their GP or Haematology Team by now and given information on shielding for 12 weeks and what this may mean. If you have not had a letter telling you that you are in the ‘highest risk category, but think that you should be, please continue to shield whilst you contact your haematology team or GP for clarification.

However, all patients with thalassaemia (intermediate and major) are potentially at higher risk than the general population and therefore should be self-isolating and following stringent social distancing measures.  Your team can provide letters of support should this be required.

Q. I don’t have a spleen; am I at a higher risk?

The government has identified those without a spleen to be as the “wider vulnerable group”.

The list can be found here:

Individuals with a form of thalassaemia (intermediate and major) who are identified to be at the highest risk should have been contacted by their GP or Haematology Team by now and given information on “shielding” for 12 weeks and what this may mean.

If this is not yet the case, we advise that you follow the government’s guidance while contacting your team for clarification.

Q. I am in the highest risk category; how will I get my prescriptions refilled?

For medications provided by your hospital: you should contact your haematology team.

For medication provided by your GP: your GPs should be able to arrange for repeat prescriptions to go to local pharmacies and then arrangements can be made for delivery or collection. Contact your GP for help with this.

Q. I have beta thalassaemia major that is well controlled, so I am not in the highest risk category, however am I at a higher risk than the general population?

All patients with thalassaemia (intermediate and major) are potentially at higher risk than the general population and therefore should be self-isolating and following stringent social distancing measures.  Your team can provide letters of support should this be required.

 Q. Should I be worried about blood stocks?

As at 8am on 16th April 2020, NHS Blood and Transplant (NHSBT) reported having adequate red blood cell stocks. NHSBT have been actively engaging with blood donors to donate blood and encouraging them to keep their appointments if they are healthy enough to do so.

It is important to note that the government has classed blood donation as essential travel during the lockdown so please encourage friends and family to do so (if they are healthy and able to do so).

The UKTS has also been running a campaign via social media (Facebook, Instagram and Twitter) by posting stories and pictures of people with thalassaemia receiving blood transfusions and what it means to them. We have also just introduced a new art competition open for children all over the world to encourage blood donation.

So far this has proven to be successful; generating a lot of interest and inspiration in promoting the need for blood donation.

However, in order to keep this campaign going, we need your help to ensure blood stocks do not decrease. Please get in touch with us to share your story or to find out more about our art competition.

Q. Can I contract coronavirus through having blood transfusions?

Currently, there is no evidence that states the virus has been transmitted through blood transfusion.  Testing has been upscaled and should be rolled out in the next few weeks.  Blood donors are being asked to contact NHSBT if they feel unwell and they attend a triage session before their blood is collected. NHSBT is monitoring the situation closely and there is the hope that “serological testing” – tests that can show if a person has a current or past infection – will become available very soon.  People with transfusion-dependent thalassaemia should not stop having their blood transfusions.

Q. Is coronavirus airborne?

The World Health Organisation states “The virus that causes COVID-19 is mainly transmitted through droplets generated when an infected person coughs, sneezes, or speaks. These droplets are too heavy to hang in the air. They quickly fall on floors or surfaces. You can be infected by breathing in the virus if you are within 1 metre of a person who has COVID-19, or by touching a contaminated surface and then touching your eyes, nose or mouth before washing your hands.”

More information can be found here: https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

Q. How does coronavirus affect people with thalassemia?

Unfortunately, as the virus is new, we do not have enough information on this. We have heard of a few cases of people with thalassaemia major contracting COVID-19 in the UK and they are doing well.

Q. Have there been any cases of people with thalassaemia contracting COVID-19 in the UK and what was the outcome?

We have heard of a few cases of people with thalassaemia in the UK and all are well and are at home. If you think may have symptoms of COVID-19 or are unwell at all, you should contact your haematology team for guidance.

 Q. I think I have symptoms of the coronavirus, what should I do?

You should contact your haematology team to let them know. Also, you should look at NHS 111 for advice.

You should keep in touch with your team regularly so that they know how your symptoms are progressing.  They can then arrange an assessment if required.

Q. What happens if I think I have coronavirus and my symptoms do not clear up after 7-10 days?

You should contact your haematology team.

Q. If I have symptoms of the coronavirus, will I be tested?

As at 14th April 2020, people are only being tested if they fall into either of the two categories outlined below:

  • Someone who is very unwell and needs to be admitted to hospital
  • NHS staff and/or their household if they are experiencing symptoms of COVID-19

However, some trusts are trying to arrange testing for patients who attend for transfusions and are symptomatic so that their transfusions can be streamlined.

We will continue to provide you with an update on this as soon as more information becomes available.

Q. What happens if I am unwell?

You should contact your haematology team.

Everyone needs to be aware that not all fever will be due to COVID-19 and to remember that people with thalassaemia (particularly those who are iron-overloaded) are vulnerable to bacterial infections and other illnesses.  If it is an emergency, please go to A&E and let your team know.

Q. If I have another emergency is it safe to go to A&E? I am afraid I might catch COVID-19.

In the event of any emergency you must call 999 or go to Accident and Emergency.

We understand how worrying this is but have been told that hospitals have sectioned the emergency department and wards to stop cross-contamination and the spread of the virus.

Q. Should I stop my chelation if I have been exposed?

You should only stop your chelation if you have a fever or you are unwell. Please contact your haematology team for advice on your specific medical needs so they can advise you when it is safe to restart your iron chelation.

Q. What happens to my transfusions if I have to self-isolate because someone in my household may have the virus?

This will vary between hospitals. We advise you contact your haematology team to get further guidance on this.

Q. I am so scared to go in for my transfusion, I want to delay.

We understand how frightening this time is for everyone but please contact your haematology team before thinking about delaying your treatment. Your haematology team will be happy to help you decide what is best for you based on your specific medical needs.

Q. What (if any) extra measures are haematology units putting in place to help protect people with thalassemia from cross-infection from staff / each other?

We have been told that some units are checking their patient’s temperature outside the unit and affected patients will be treated in a separate room. However, this will vary between hospitals. We advise that you contact your local haematology team to find out.

Q. Should the nurses/medical team be wearing PPE when treating patients with thalassaemia?

We have been advised that the current guidelines state that PPE (a fluid resistant surgical mask (FRSM), gloves and an apron) should be worn when treating all people with thalassaemia.

If you feel unsure or are worried about this, we suggest you speak to your haematology team for clarification.

Q. Are the nurses and doctors who are treating people with thalassaemia, being tested for COVID-19 regularly?

As per a statement released by NHS England dated 12 April 2020, NHS staff and /or people of their household are only being tested presently if they are experiencing symptoms of the coronavirus.

This statement can be viewed here: https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/C0295-Testing-of-NHS-staff-and-household-members-letter-12-April-2020.pdf

There is currently no guidance regarding screening or isolation of contacts of infected staff members e.g. other staff

If you feel unsure or are worried about this, we suggest you speak to your haematology team for clarification.

Q. What can we reasonably expect as precautions from medical and nursing staff attending to us at hospital?

As the use of PPE by medical and nursing teams will vary throughout the UK, you should expect all healthcare professionals to comply with the infection prevention and control guidelines outlined by their trusts.

All health care workers will:

  • Ensure they uphold proper hand hygiene; they will wash/disinfect their hands for at least 20 seconds with soap and water or antibacterial gels before coming into contact with you.
  • Ensure the apparatus (cannulas, giving sets, drip stands etc.), machinery (blood pressure monitors, oximeters etc.) and the environment (the unit) that you are being treated in are sterilised and disinfected.
  • Ensure PPE (a fluid resistant surgical mask (FRSM), gloves and an apron) is worn when treating all people with thalassaemia.

However, as a patient you should be extra cautious and take responsibility for your surroundings and the care about to be given to you. If you feel unsure about people washing their hands before they touch you, we suggest you calmly and politely ask them if they have washed/ disinfected their hands, or if they mind doing so. It is important to remember that everyone is anxious and health professional are under a great deal of pressure at the moment, so it is easy for things to be missed. We are sure your team will not mind you championing your health, in a calm and polite way. If you are not happy, you should discuss your concerns with your team.

Additionally, it is equally as important for you to wash your hands and practice rigorous infection prevention and control in order to protect yourself and others around you.

Q. What happens if I am stopped by authorities on the way to the hospital?

You should carry a copy of your appointment or clinical letters with you.

Q. Who should I contact if I have more questions?

For specific medical questions – you should contact your haematology team or GP.

For general questions and updates – you can contact the UKTS.