Red Cell and Haemoglobin Disorders Unit – for Adults with Sickle Cell Disease and Thalassaemia
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 do not know if you are more at risk of catching it compared to others in the population, but obviously there are some additional factors to bear in mind about how it could potentially affect you. We have prepared this information to give some information and advice at this time. We will endevour to update this page. Please also consult national guidance on nhs.uk and gov.uk wepages.
ISOLATION AND SHIELDING EXPLANATION AND ADVICE
Letter from NHS England advising about new recommendations for people with sickle cell disease. Please note, this advice does NOT apply to those who are sickle carriers or sickle trait.
Update from the National Clinical Reference Group for Haemoglobin Disorders:
We have reviewed this guidance (above) and offer clarification on groups of patients who should be included.
In line with government guidance we are recommending that these patients should be following advice on shielding:
- All patients with sickle cell disease (e.g HbSS, HbS Bthal, HbSC and so on). It does not apply to patients with sickle cell trait (sickle cell carriers)
- All patients with sickle cell disease (e.g. HbSS, HbS Bthal, HbSC and so on). It does not apply to patients with sickle cell trait (sickle cell carriers).
• Patients with thalassaemia who are at particularly high risk due to iron overload (moderat cardiac iron overload or other cardiac complication related to thalassaemia, severe iron overload in the liver or ferritin >3000 mg/L) or those with a splenectomy in combination with another risk factor for complications e.g. diabetes.
- Patients with Diamond Blackfan anaemia who are on steroids as per NHP guidance, with an associated immunodeficiency (or due to age have not yet been assessed), have adrenal insufficiency on steroid replacement, have iron overload as per thalassemia criteria above or have had a BMT within 6 months or are still using immunosuppressive drugs.
- Patients with other rare inherited anaemias e.g. pyruvate kinase deficiency, congenital dyserythopoietic anaemia who have had a splenectomy and are at particularly high risk due to iron overload as per thalassaemia guidelines above.
Patients are currently being contacted by NHS England by letter or text. The guidance states that if patients think they fall into one of the categories of extremely vulnerable people and have not received a letter by Sunday 29 March 2020 or been contacted by their GP they should discuss their concerns with their GP or hospital clinician. The letter is linked above for your information.
We would like to reassure our patients that even if they develop symptoms of Covid-19 many people have a mild course and this data is supported by the experience of red cell consultant colleagues from Italy. However patients in the high risk groups are at higher risk of a more severe form of the disease and this is why they are asked to follow shielding advice. Whilst there is national guidance available for the public and the NHS 111 service, if such patients have symptoms consistent with Covid-19 infection we would recommend that they contact their hospital team for advice – at St George’s please follow recommendations in the letter below.
We would advise all patients with reduced splenic function or post splenectomy to ensure that they are up to date with their immunisations.
Patients with thalassaemia and Diamond Blackfan Anaemia who are not advised to shield should be stringent in socially isolating and should not go to work (even if they are key workers) or to school.
All haemoglobinopathy patients need urgent assessment if unwell or have fever to rule out non-COVID-19 causes (e.g. bacterial infections causing sepsis).
We are collecting information on sickle cell and thalassaemia patients and Covid19 infection and will be updating the guidance as new information comes to light
Full Document available here
Employment advice: What shall I do as an employer or employee? Particularly if I am being asked to support someone who is vulnerable according to the new shielding guidance.
If you are shielding and need to be able to discuss this with your employer the following links may be helpful
INFORMATION ABOUT SERVICES AT ST GEORGE’S
UPDATE ABOUT OUTPATIENT CLINIC SERVICES
Over the next few weeks unfortunately we will NOT be running our outpatient clinic service as normal. All clinic appointments are being rearranged and will be delayed for several weeks to months. We know this is 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.
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
Please continue to take your medication unless told otherwise. We will be in touch with patients individually about blood tests and prescriptions as they are needed.
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 the gov.uk website; See https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public.
If you are concerned that you are not well enough to be at home, please contact 111 for advice and ensure you mention both sickle cell disease/thalassaemia and COVID-19 symptoms. After you have spoken to NHS111 please also contact us to let us know you have symptoms so we can support you and review you if needed.
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.
We know people may be worried about coming to the hospital at this time, but please be assured that the hospital have put significant measures in place to keep patients safe. 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 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. There may be some patients who are at less risk when missing / delaying exchanges. We are evaluating all of these factors, and these decisions are being made by your clinical team on a daily basis with full care and attention, but do contact us if you have concerns.
It is more important than ever 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, are self-isolating or have symptoms of the virus as soon as possible.
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 do let us know and we will discuss whether to continue this or not.
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 or someone who can collect these for you.
We are aware that there have been some questions raised about the potential impact of ibuprofen and other similar medications called non-steroidal anti-inflammatory drugs (NSAIDs) on COVID-19. NSAIDS include ibuprofen, diclofenac (volterol) and naproxen. The evidence currently is NOT convincing that there is a significant link, but if you can stop these medications, or change to a different pain killer (such as paracetamol) without causing too much difficulty in terms of increased pain then that may be preferable particularly if you were to develop any symptoms of COVID-19
STAYING IN TOUCH
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:
Carol Rose (Lead CNS for Haemoglobinopathy): 07825 978812
Community specialist nursing team: 03300581679
Jenna Love, Libby Lyons, Rebecca McLoughlin (psychology and pain management team): 07798 581198
Haematology Secretary: 0208 725 0885
The team will be as available as we can be, within the needs of a busy acute hospital at this time, and you can contact us using the numbers above. If we are unavailable we will try to leave messages on our voicemails to let you know. If how and who to contact changes over the next few weeks we will keep you updated.
Emotional wellbeing :
We recognise that the coming months may be worrying and difficult for many of us. If you are at home but don’t have any symptoms consider what you can do to maintain a routine, keep busy and remain healthy (e.g. by keeping hydrated, eating as well as you can, doing some gentle exercise). Please do draw on all your sources of support via telephone, text and social media. Many organisations have developed useful information, for example
Our physiotherapist Rebecca has created some videos about movements you can do at home, which should be suitable for a variety of fitness and mobility levels, which are available on our youtube channel
You can also access a guide to help people living with worry and anxiety
End of Covid-Specific Information
We are a Specialist Haemoglobinopathy Centre providing comprehensive healthcare for patients with sickle cell disease, thalassaemia and rare anaemias living in the local area, and also providing specialist services (including apheresis, psychology and pain management) for other hospitals within our networks. We form part of the west London Haemoglobinopathy Co-coordinating Centre, working with Imperial College Healthcare NHS Trust (Hammersmith Hospital and St. Mary’s Hospital) and London North West University Healthcare NHS Trust (Northwick Park Hospital, Ealing Hospital and Central Middlesex Hospital). We work in a multi-disciplinary approach, liaising with other specialties within the hospital to ensure each person is given the best care.
For more information on the red cell pain management and psychology service, please click HERE.
For the contact details of our Community services, available to those in Wandsworth, please click HERE.
For more information about Full circle fund therapies, who provide integrative therapies for people living with haemoglobinopathies please click HERE
For Trust Guidelines and Policies on the Management of sickle cell disease and thalassaemia, click here.
For useful documents including proformas and referral forms, click here.
For further reading including National Guidelines and standards, click here.
What are haemoglobin disorders?
Sickle cell disease and thalassaemia are lifelong, inherited disorders that affect the red blood cells.
Sickle cell disease (SCD) can cause red blood cells to change shape or ‘sickle’. The sickle-shaped cells contain defective haemoglobin, the iron-rich protein that enables red blood cells to carry oxygen from your lungs to the rest of the body. The abnormal cells are also unable to move around as easily as normal shaped cells and can block blood vessels, resulting in tissue and organ damage and episodes of severe pain.
Thalassaemia is a condition that, in its most severe form, causes abnormalities in haemoglobin, the component of blood that carries oxygen from the lungs to the body’s tissues and returns carbon dioxide from the tissues back to the lungs. Some people need regular blood transfusions to avoid complications.
More information on these conditions can be found in our patient information leaflets below and at the following websites:
A helpful document about sickle cell disease and employment can be downloaded here
Patient information leaflets
To see our patient information leaflets, including more information on sickle cell disease and thalassaemia, please click here
All of our leaflets are under Haematology – Red Cell & Haemoglobin Disorders Unit (Adults). The leaflet Sickle cell and thalassaemia service (adults) has all our up to date service information and contact numbers. If you have any comments on our leaflets, please let us know by e-mailing SCDpain@stgeorges.nhs.uk
Guidelines on the management of haemoglobinopathies for health care professionals
Please click HERE to access our current guidelines and policies. Although these guidelines are primarily intended to be read by health professionals, they can be accessed by all.
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