Coronavirus (COVID-19) & Sickle Cell Disorder
This page provides the latest information and guidance regarding coronavirus (COVID-19) and sickle cell. [Updated 14/05/2020]
What is Coronavirus (COVID-19)?
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.
- For everyone: Staying alert and safe (social distancing) – this includes anyone with sickle cell trait (sickle cell carriers)
- For all patients with a sickle cell disorder (e.g. HbSS, HbS Beta thalassaemia, HbSC, HbSD, HbSO): Shielding
More details around each section of guidance can be found further down in this article
Staying alert and safe (social distancing)
- 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
The latest government guidance strongly advises people with serious underlying health conditions (click here to see the full list of clinically extremely vulnerable groups) to rigorously follow shielding measures in order to keep themselves safe.
This includes all patients with sickle cell (e.g. HbSS, HbS Beta thalassaemia, HbSC, HbSD, HbSO).
Please note that this does not apply to people with sickle cell trait (sickle cell carriers) – read more about trait here
The NHS in England or your hospital care team are directly contacting people with these conditions to provide further advice. If you have a sickle cell disorder and you have not been contacted by Sunday 29 March 2020 or been contacted by your GP, you should discuss your concerns with your hospital care team or GP by calling them.
What is Shielding?
Shielding is a measure to protect clinically extremely vulnerable by minimising interaction between those who are clinically extremely vulnerable and others.
If you fall into an clinically extremely vulnerable group (sickle cell disorder), you are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks from the day you are contacted by the NHS or your hospital care team as long as it is safe to do so. If you become unwell during this time you must contact your hospital care team for advice as usual to be sure that you receive the right treatment for your sickle cell disorder. In a medical emergency call an ambulance on 999.
Below is further guidance on shielding:
- Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19) – high temperature and/or new and continuous cough
- Do not leave your house
- Do not attend any gatherings (including gatherings of friends and families in private spaces for example family homes, weddings and religious services)
- Do not go out for shopping, leisure or travel
- Food or medication deliveries should be left at the door to minimise contact
- Keep in touch using remote technology such as phone, internet, and social media
Visits from people who provide essential support to you such as healthcare, personal support with your daily needs or social care should continue, but carers and care workers must stay away if they have any of the symptoms of coronavirus (COVID-19). You may find this guidance on home care provision useful. All people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival to your house and often whilst they are there.
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.
Living with Other People
We know that many people live with others and may be concerned about how to effectively shield whilst sharing a house or flat. Below is guidance if you have a sickle cell disorder and you live with other people.
Although the other people you live with do not need to follow shielding guidelines (unless they also fall into an clinically extremely vulnerable category – click here to see the full list) everyone in the house should do what they can to support you in shielding and strictly follow the specific advice below and general social distancing advice (found later in this article).
- Try to minimise the time spent with other people in shared spaces (kitchens, bathrooms, sitting areas)
- Keep shared spaces well ventilated
- Aim to keep 2 metres (3 steps) away from people you live with and encourage them to sleep in a different bed where possible
- If possible, use a separate bathroom from the rest of the household
- If you do share a toilet and bathroom with others, it is important that they are cleaned after use every time (for example, wiping surfaces you have come into contact with)
- Use separate towels from the other people in your house, both for drying themselves after bathing or showering and for hand-hygiene purposes
- Another tip is to consider drawing up a rota for bathing, with you using the facilities first
- If you share a kitchen with others, avoid using it while they are present
- If you can, you should take your meals back to your room to eat
- If you have one, use a dishwasher to clean and dry the family’s used crockery and cutlery. If this is not possible, wash them using your usual washing up liquid and warm water and dry them thoroughly
- If you are using your own utensils, remember to use a separate tea towel for drying these.
We understand that for many people it will be difficult to separate themselves from others they live with. Try as best you can to follow this guidance and everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces.
Getting help with food, shopping and medicine
To continue to get food, shopping and medicine you should ask your family, friends and neighbours to support you and use online services.
If this option is not available then the public sector, business, charities, and the general public are gearing up to help those advised to stay at home.
During this time of staying at home (shielding) please speak to those you trust on how they can support you (family friends, carers, neighbours, and community groups).
From Tuesday 24th March 2020, if you are in the clinically extremely vulnerable group (sickle cell disorder) you will be able to apply for support (including food, shopping and additional care).
Please visit https://www.gov.uk/coronavirus-extremely-vulnerable to find out more.
During this period, prescriptions will continue to be provided as usual. If you do not currently have your prescriptions collected or delivered, you can arrange this by:
- Asking someone who can pick up your prescription from the local pharmacy, (this is the best option, if possible)
- Contacting your pharmacy to ask them to help you find a volunteer (who will have been ID checked) or deliver it to you
- You may also need to arrange for collection or delivery of hospital specialist medication that is prescribed to you by your hospital care team
Care support from your local authority or health care system will continue as normal, with additional precautions being made to make sure that you are protected.
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 Schools
The latest government guidance states that from the 1st June there will be a phased return of children and young people to nurseries, schools and colleges in a way that is measured, reduces risks and is guided by science.
For children in the clinically extremely vulnerable group
The government guidance states that children and young people who are considered extremely clinically vulnerable and shielding (sickle cell disorder) should continue to shield and should not be expected to attend.
Children and young people who live in a household with someone who is extremely clinically vulnerable and shielding (sickle cell disorder) should only attend if stringent social distancing can be adhered to and the child or young person is able to understand and follow those instructions.
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.
Official guidance and information can be found here:
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
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.
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/