On this page:

Haemoglobinopathy & COVID-19 (the illness caused by coronavirus)

We understand that many of you may be concerned about Covid-19, and the potential impact on you as someone living with a haemoglobinopathy (sickle cell disease or thalassaemia). COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a virus called coronavirus. We have prepared this information to give some information and advice at this time. We will endeavour to update this page. Please also consult national guidance on nhs.uk and gov.uk webpages.

CHANGES TO SHIELDING GUIDANCE

The latest guidance, for all conditions, can be found here.

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

It is important to read this carefully so you understand the changes that are being advised. These changes have been carefully considered by Haemoglobinopathy clinicians in the UK, and are based on the rate of infection, information about the impact of COVID on people who have haemoglobinopathies (see Patient information on COVID infections in inherited anaemias June 2020 and Patient information on COVID infections in inherited anaemias Infographic) and also the impact on the health and wellbeing of those having to shield.

There is also an additional document produced by the UKTS for those with thalassaemia:

UKTS Patient Info June 2020

Employment and Financial Support

The document above also has some information about returning to work, and the following links may also be useful.

https://www.gov.uk/government/publications/guidance-to-employers-and-businesses-about-covid-19/covid-19-support-for-businesses

Information about Employment and Benefit Support: https://www.understandinguniversalcredit.gov.uk/coronavirus/

If you develop symptoms of the virus

If you have a fever or a new cough please follow the most up to date advice, which can be found on https://www.nhs.uk/conditions/coronavirus-covid-19/symptoms/

If you are concerned that you are not well enough to be at home, please contact NHS111 for advice and ensure you mention sickle cell disease/thalassaemia and COVID-19 symptoms.

If you have symptoms please do call us as well as soon as you can so we can review you. Depending on your symptoms we will either suggest that you stay at home and we will review you with regular telephone conversations or advise you to come into hospital so you can be assessed and receive treatment if necessary. Please do NOT wait for NHS111 to call you back before you contact us. There may be specific issues related to your sickle cell or thalassaemia that means we suggest you come in to hospital and this may be different advice to NHS111.

If you need urgent medical help, please call 999 and let them know you are experiencing a sickle cell crisis/issues with thalassaemia, and that you have covid-19 symptoms. 

Coming into hospital for urgent or routine care

We know people may be worried about coming to the hospital at this time. Please be assured that the hospital have put significant measures in place to keep patients safe.

If you need urgent care, you will be assessed and treated in the Emergency Department (A&E) in a similar way to usual, and if needed, admitted to a ward for care. If you think you need hospital care then please do not delay in coming to the Emergency Department.

If you are coming in for routine care (like a blood test, exchange or scan), all departments of the hospital have taken care to minimise the risk of infection, including social distancing. Staff will be wearing masks (as well as potentially other protective equipment).

People coming into the hospital are asked to follow national guidance and wear a face covering at all times.

Update about our clinical services

At this time, many of our outpatient clinics are being offered via telephone or video, including medical, nursing, psychology and physiotherapy appointments.  Some may need to be postponed and rescheduled. We will let you know whether your appointment is going ahead as planned, but if you are unsure please contact us to check.  Please do not come to hospital unless you are specifically asked to.

Please do NOT come to hospital if you have symptoms of a fever or cough unless you need to come to our Emergency Department for urgent review

If you have regular exchanges or top up blood transfusions,

Currently there are no problems with blood supply, or any concerns about the virus being transmitted via a blood transfusions – NHS Blood and Transplant are carefully monitoring the world wide situation. We know that patients may be worried about attending hospital at this time. Please be assured that we are reducing the number of people coming to hospital for non urgent appointments to minimise the risk to those coming for treatments like exchanges and transfusions.

As you know, the exchanges/transfusions are an important part of your healthcare and it may well be important to prioritise this to keep you well and out of hospital. As always, it is important that we do not waste appointments and blood ordered for exchanges and transfusions, so please let us know if you have any concerns about attending, have symptoms of the virus or are living with someone with symptoms of the virus as soon as possible.

Our apheresis unit for exchange blood transfusions has moved and is now located on the Ruth Myles Day Unit on the second floor of St James’ Wing.

The telephone number is the same 020 8725 0612.

If you take hydroxycarbamide

Please continue at your regular dose. Taking hydroxycarbamide does not increase your risk of viral infections, but it does keep your sickle cell under control and reduces your risk of coming into hospital with a sickle cell crisis. You will still need to have blood tests as previously discussed with you to monitor your hydroxycarbamide and we will work with you to ensure you have the right tests done. This may at times be at a different location to where you normally have blood tests.

If you take iron chelation medication

If you are on chelation please do continue this as well and we will arrange blood tests for you as needed.

If you have a fever please stop your iron chelation medication and call us – we will discuss when to restart this.

Your other medications

Please also continue with any other regular medications, like folic acid and anti-biotics, as usual. Please make sure you have enough of your regular medications.

Vitamin D

Many people have wondered about the role of vitamin D in helping fight covid-19 – whilst there is no concrete evidence to support its use specifically against covid-19, everyone is recommended to take at least 10mcg daily (and not more than 100mcg). This can be bought from most high street chemists or on line (it is not routinely prescribed by the GP or hospital). If you have any further questions about Vitamin D, please contact your GP or the team.  Vitamin D may have more use as people spend less time outside during lockdown. Advice from the government on vitamin D and COVID-19 can be found here https://www.nice.org.uk/advice/es28/chapter/Key-messages.

STAYING IN TOUCH 

We know this continues to be a worrying and uncertain time for many but we will stay in touch and we are here to answer your questions – please do use the information on this website and let us know if you have further concerns.

Contact numbers:

Carol Rose (Lead CNS for Haemoglobinopathy): 07825 978812

Community specialist nursing team: 03300581679

Jenna Love, Rebecca McLoughlin (psychology and pain management team): 07798 581198

Haematology Secretary (to leave a message for Dr Rhodes and Dr Sikorska): 0208 725 0885

Out of hours – in emergency please call 999, for urgent advice please call St George’s and ask to speak to the haematology doctor on call.

If you are a St George’s Hospital patient with sickle cell disease or thalassaemia and would like to be added to a Whats App Broadcast list, please text your full name to 07798 581198. This will allow us to quickly share any useful information. It is not a group chat and your number won’t be shared with anyone else.

Further information can also be found on the Sickle Cell Society and UK Thalassaemia Society websites:

https://www.sicklecellsociety.org/

https://ukts.org/

http://diamondblackfan.org.uk