Coronavirus (COVID-19) & Sickle Cell Disorder
Please note that some of this information is out of date and is currently under review. The page will be updated with the latest guidance soon.
This page provides the latest information and guidance regarding coronavirus (COVID-19) and sickle cell. [Updated 09/10/2020]
What is Coronavirus (COVID-19)?
COVID-19 is an illness that particularly affects the lungs and airways but can also affect the gut, kidneys, heart and brain . It is caused by a virus called coronavirus.
The main symptoms include high temperature and/or new and continuous cough. People with the infection often notice a loss of taste and smell. Symptoms may be mild duirng the first week and then worsen after about 10 days. As time goes on and more knowledge has been gained about the nature of the virus, it has become apparent that there can be long term effects of Covid 19 infection
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.
Staying alert and safe (social distancing) – for all
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.
It is critical that everybody observes the following key behaviours:
- HANDS – Wash your hands regularly and for 20 seconds.
- FACE – Wear a face covering in indoor settings where social distancing may be difficult, and where you will come into contact with people you do not normally meet.
- SPACE – Stay 2 metres apart from people you do not live with where possible, or 1 metre with extra precautions in place (such as wearing face coverings or increasing ventilation indoors).
Some of this guidance is specific to England, you can find more specific guidance for Wales, Scotland and Northern Ireland here:
Further to these key behaviours there are other guidelines:
- You must not meet in groups of more than 6 when meeting with people outside of your household. This is set out in law.
- 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
More details and specific guidelines and laws can be found here: https://www.gov.uk/coronavirus
Shielding: Currently Paused
If you are clinically extremely vulnerable (sickle cell disorder) you were advised to take extra precautions during the peak of the pandemic in England. This is known as ‘shielding’.
The current guidance for the clinically extremely vulnerable is that shielding has been paused. The Government is advising you to adopt strict social distancing rather than full shielding measures. This means:
- you do not need to follow previous shielding advice
- you can go to work as long as the workplace is Covid-secure, but should carry on working from home wherever possible
- clinically extremely vulnerable children (sickle cell) should attend education settings in line with the wider guidance on reopening of schools and guidance for full opening: special schools and other specialist settings
- you can go outside as much as you like but you should still try to keep your overall social interactions low
- you can visit businesses, such as supermarkets, pubs and shops, while keeping 2 metres away from others wherever possible or 1 metre, plus other precautions
- you should continue to wash your hands carefully and more frequently than usual and that
- you maintain thorough cleaning of frequently touched areas in your home and/or workspace
- you will no longer receive free food parcels, medicine deliveries and basic care from the National Shielding Service
- You should remain cautious, as Covid-19 can be a severe infection, and may cause more complications in some people with sickle cell disorder.
- Some people with particular complications of sickle cell disorder might be advised to continue to shield by their doctor. If you are particularly worried about stopping shielding you should discuss this with your sickle cell doctor or nurse specialist.
If you are clinically extremely vulnerable, you will still have access to:
- local volunteer support by contacting your local authority
- prescriptions, essential items and food you buy delivered by NHS Volunteer Responders
- priority slots for supermarket deliveries (if you previously registered for free food parcels)
If transmission of COVID-19 increases
You could be advised to shield again if the situation changes and there is an increase in the transmission of COVID-19 in the community.
Your name will be kept securely on the shielded patient list by NHS Digital and they will write to you if the advice changes. Any national changes will be reflected in this guidance.
Find out more
Find out more about the advice for those who are clinically extremely vulnerable, including guidance on work, employment rights, children and young people and more 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
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.
How many people with inherited anaemias have had Covid-19?
As of May 6th, 195 people had been reported with proven or suspected COVID-19. Of these, 175 were adults and 20 children. Most had Sickle cell disease, but a small number of thalassemia and rare inherited anaemia patients were also affected.
How many people were admitted to hospital?
About three quarters of patients were admitted to hospital (about 146 people), and the rest managed at home. Just as many women as men were admitted to hospital. Of the patients admitted to hospital, about a tenth needed intensive care (about 15 people). Of the 20 children suspected or proven to have COVID-19, none required intensive care.
What was the outcome for people admitted to hospital?
The picture is not yet complete, because some people are still being treated for COVID-19. However, for the moment we can say that:
- the available results show that for every 100 patients infected, 92 (92%) have recovered and 8 (8%) have died
- the people who died were more likely to have other medical problems such as heart disease, cancer, kidney disease, diabetes and high blood pressure
- it is too early to say whether patients with inherited anaemias do any worse than the general population
- children with sickle cell disease, thalassaemia and rare anaemias who do not have other risk factors, do not seem to be at increased risk of having severe disease
- adults with sickle cell disease should still be considered ‘clinically extremely vulnerable’ and follow government guidance about shielding
- in the case of adults with thalassaemia and rare anaemias, the advice on shielding should be assessed for each person by their doctor
- it is important to note that there have been many people with inherited anaemias who have had few or no symptoms with their COVID-19 infection, and who have fully recovered
The data gathered in the national survey will be updated as more information becomes available.
What do I do if I think that I or my child may have Covid-19?
Please do not stay at home without telling anyone– it is important to contact your medical team and discuss whether or not you should be assessed in hospital.
Isn’t coming to hospital dangerous?
There are many people who have been extremely concerned about presenting to hospital, some have delayed at times when they have been very unwell. If someone with these important health conditions is unwell, please seek advice from your specialist team. Hospitals have been re-organised to protect people who come in with non-COVID admissions.
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.
Continue reading for the official guidance and advice
Given the very unusual circumstances that shielding creates, it is important to be aware of ways to keep oneself as fit and healthy as possible. This includes eating a varied diet which should include plenty of fresh fruit and vegetable. Foods that contain Vitamin D such as oily fish and eggs are important as Vitamin D deficiency is very common not only in the general population but also in sickle cell disorder and may exacerbate bone pain. Sunlight on bare skin is a good way to increase Vitamin D intake so every opportunity should be taken to benefit from the sun, if only at an open window or on a balcony, if sitting in a garden is not feasible.
Taking regular moderate exercise is not only good for physical health but also improves general mood and helps overall mental health. Very rigorous exercising is not recommended in sickle cell disorder and if the weather is hot care should be taken to drink plenty.
If you are anxious about your health whilst shielding or want more advice you can contact your specialist health care team . If you become unwell you should contact your GP and in an emergency phone 999.
Hospital and GP Appointments
Where possible, try and access medical assistance remotely. Hospital care teams are offering most patients telephone or video consultations during the COVID-19 outbreak.
If you have a scheduled hospital or other medical appointment and have not been contacted by your GP or specialist about this, call them before attending to confirm that the appointment has not been canceled or postponed. Talk to them about how best to ensure you can continue to receive the care you need.
Children and Young People
Specialists in paediatric medicine have reviewed the latest evidence on the level of risk posed to children and young people from COVID-19.
The latest evidence indicates that the risk of serious illness for most children and young people is low. In the future, we expect fewer children and young people will be included on the shielded patient list.
If a child or young person is removed from the shielded patient list, they will no longer be advised to shield in the future if coronavirus transmission increases.
To decide on whether a child or young person should be removed from the shielded patient list, you should talk to your paediatric specialist or GP.
As shielding has been paused, children and young people who are in the extremely clinically vulnerable category (sickle cell disorder) can attend school as schools should be following covid-safe guidelines.
Children and young people under the care of a specialist health professional may need to discuss their care with their health professional before returning to school or college. This should usually be at their next planned clinical appointment.
If children are not able to attend school because they are following clinical and/or public health advice, you will not be penalised.
Post-Covid Inflammatory Syndrome
Specialists in Italy and England have described an increase in cases of an paediatric inflammatory multisystem syndrome (similar to Kawasaki disease) following the beginning of the pandemic with COVID-19*. This is a very rare syndrome characterised by a high temperature, rash and swollen glands. The treatment includes the use of high dose steroids and the outcome is usually good.
However, this treatment could be detrimental in children who have sickle cell disorder. It is important therefore that a distinction is made between a sickle cell episode and this very rare disease. There can be confusion as symptoms overlap. It is important that you talk to your specialist paediatrician or haematologist if you are concerned about new symptoms occurring weeks after a Covid infection to ensure the right diagnosis is reached.
*BMJ 2020; 369 doi: https://doi.org/10.1136/bmj.m1990 (Published 15 May 2020)
Sickle Cell Trait
If you have sickle cell trait please follow the guidance given to the general public. This doesn’t make you more vulnerable to coronavirus infection but do check the full clinically vulnerable groups list in case you fall into another category such as if you have had your spleen removed, are pregnant or aged over 70). The full clinically vulnerable groups list can be found here.
General Advice about Feeling Unwell
If you are mildly unwell with a cough or fever below 37.8 oC you should manage your illness at home and not go to your GP or A&E. If you are worried about your symptoms you should call your hospital care team for advice.
If you suspected you have any symptoms of COVID-19 (high temperature and/or new and continuous cough) please contact your centre (even if you have called 111) of care to ensure that you receive the appropriate specialist advice on the need for further assessment.
Due to the impact other infections can have on people living with sickle cell (including pneumonia and acute chest syndrome) anyone with a sickle cell disorder who has a worsening cough, difficulty in breathing or fever above 38 oC should urgently contact their centre of care or in an emergency 999. Mention you are worried about coronavirus but also that you have sickle cell disorder. They will then instruct you further.
Sickle Cell Pain (Crisis)
If you are experiencing severe sickle cell pain (crisis) then go to hospital as normal. However, if you also have a cold, a high temperature or new and continuous cough contact your centre of care (or 999 in an emergency) first.
Taking medicines during the COVID-19 outbreak
If you are taking hydroxycarbamide or iron chelators (drugs to remove excess iron) it is important these are continued. Your centre of care will make arrangements to monitor this treatment through the hospital or your GP. There is no evidence these drugs affect the risk of COVID-19 one way or the other. However there is some concern that anti-inflammation pain killers like ibuprofen might make coronavirus infection worse. During the COVID-19 outbreak it is recommended that you take paracetamol (unless you have an allergy to it) which is safe instead.
To avoid the catching or spreading of germs:
- cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
- put used tissues in the bin immediately
- wash your hands with soap and water often – use hand sanitiser gel if soap and water are not available
- try to avoid close contact with people who are unwell
- do not touch your eyes, nose or mouth if your hands are not clean
The NHS have a specific service for people who think they might have coronavirus. You can find out more about it here: https://111.nhs.uk/covid-19
Do not go to a GP surgery, pharmacy or hospital. Call 111 if you need to speak to someone or use the online service.
Responding to Covid-19: Reasons for Hope
Sickle Cell Society Chief Executive, John James OBE, writes for the King’s Fund’s Leading through Covid-19 series to reflects on the challenges the organisation has faced and shares what he has learnt and what gives him hope for the future. Click here to read the full article.
Official guidance and information can be found here:
111 Online Service: https://111.nhs.uk/covid-19
Extremely Vulnerable Group: https://www.gov.uk/coronavirus-extremely-vulnerable
Government Response – https://www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response
Isolation Advice: https://111.nhs.uk/isolation-note
NHS Guidance – https://www.nhs.uk/conditions/coronavirus-covid-19/
Social Distancing: https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults
Universal Credit and Coronavirus: https://www.understandinguniversalcredit.gov.uk/coronavirus/