Sickle Cell Society Chief Executive John James OBE    

 What is Coronavirus (COVID-19)?

COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a virus called coronavirus.

The main symptoms include high temperature and/or new and continuous cough.

The current risk level in the UK is high.

As the illness is new, there is limited specific information for people living with sickle cell. However, below we have included all the available specific information there is and included the official guidance on avoiding catching or spreading germs and what to do if you need medical help, which all apply.

Initial Data – Patient information on COVID-19 in haemoglobinopathy and rare inherited anaemia patients

Since the start of the COVID-19 pandemic, some groups of patients have been classed as ‘clinically extremely vulnerable’ and advised to ‘shield’ in order to avoid becoming infected. Many patients and patient support groups would like know how frequent and how severe COVID-19 has been for people with inherited anaemias, including:

• Sickle cell disease
• Thalassaemia (transfusion dependent and non-transfusion dependent)
• Diamond Blackfan anaemia
• Congenital dyserythropoietic anaemia
• Congenital sideroblastic anaemia
• Pyruvate kinase deficiency (with and without a spleen)
• Hereditary Spherocytosis (with and without a spleen)
• Other types of rare inherited anaemia

Since March 2020, a national group of doctors and nurses looking after people with inherited anaemias (called the National Heamoglobinopathy Panel) have been meeting via videoconference once a week to discuss how COVID-19 has affected their patients. This discussion is entirely confidential, with no patient-identifiable details discussed at all. The group reviews guidance issued by NHS England and advises NHS England and patient support groups about specific COVID-19 risks. Hospitals across the England have sent in anonymised data to the group regarding the number of cases of COVID-19 and what happens to people who get it. 

What can I do to stay well?

We recommend that continuing to focus on physical and mental health in all areas is also important eg taking prescribed medication, improving your diabetes, exercising, or eating healthy foods.

If you have any concerns about you or your child’s individual risk please discuss it with your specialist team.

Staying alert and safe (social distancing) – for anyone with sickle cell trait

The most recent Government advice is that the most important thing we can do is to stay alert, control the virus, and in doing so, save lives. This should be done through:

• People and employers should stay safe in public spaces and workplaces by following “COVID-19 secure” guidelines. This should enable more people to go back to work, where they cannot work from home, and encourage more vulnerable children and the children of critical workers to go to school or childcare as already permitted
• You should stay alert when you leave home: washing your hands regularly, maintaining social distancing, and ensuring you do not gather in groups of more than two, except with members of your household or for other specific exceptions set out in law (click here to find out more about staying alert)
• You must continue to stay home except for a limited set of reasons but – in line with scientific advice – can take part in more outdoor activities

It is still very important that people stay home unless necessary to go out for specific reasons set out in law. These include:

• for work, where you cannot work from home
• going to shops that are permitted to be open – to get things like food and medicine, and to collect goods ordered online or on the phone
• to exercise or spend time outdoors for recreation
• any medical need, to donate blood, avoid injury or illness, escape risk of harm, or to provide care or to help a vulnerable person