Sickle cell service & Thalassaemia Service

Please be advised that this patient information may become rapidly out of date, so please check the NHS website for up to date information.

• Supervise your child so they wash their hands often - with soap and water for at least 20 seconds.
• Use an alcohol-based hand sanitizer that contains at least 60% alcohol if soap and water are not available. This is particularly important after taking public transport
• Avoid touching your eyes, nose, and mouth
• Avoid close contact with people who are sick
• If your child feels unwell, keep them at home, and do not attend school
• Cover your cough or sneeze with a tissue, then throw the tissue in a bin. See Catch it, Bin it, Kill it
• Clean and disinfect frequently touched objects and surfaces in the home and work environment
• If you are worried about your symptoms, please call NHS 111. Do not go directly to your GP or other healthcare environment
• See further information and the Public Health England Blog
• See advice on the Sickle Cell Society website

There is currently no vaccine to prevent COVID-19 acute respiratory disease. The best way to prevent infection is to avoid being exposed to the virus.

• Avoid large gatherings. Your child can continue to go to school unless there is national guidance to stop attending.
• Avoid handshakes and hugs.
• Avoid contact with people who have travelled from areas of the world where coronavirus rates are high (this list will be updated on a regular basis).
• Keep your child warm.
• Make sure your child has had the flu vaccine.
• Ensure you child has good compliance with their Penicillin Prophylaxis.
• Drink plenty of fluids.
• In case of raised temperature (38C and above), cough or shortness of breath please contact the GP Or 111 for advice. Explain that your child has sickle cell disease and if they have had a splenectomy, please let them know.  In the interim, double your child’s dose of penicillin V and give it to them 4 times a day. If your child has an incentive spirometer at home then please use this. If in addition to breathlessness your child has severe chest pain that stops them from taking a deep breath then you should attend for assessment (go to the emergency department). If your child has any severe symptoms we recommend you attend the emergency department for review. All children less than 10 years old and those children who have had a splenectomy should be assessed in the emergency department if they have a high temperature. Stop chelation medication if your child has a high temperature.
• Please also contact our sickle cell service by email: bhnt.scatservice-rlh@nhs.net to inform the team of advice given.  If you choose to contact us by telephone out of hours, please leave a message and we will endeavour to contact you within 24 hours (0203 246 0352).
• The team will endeavour to contact you within 24 hours to advise further management.
• You may be asked to keep your child at home and self-isolate.
• We may advise you to double up on your child’s dose of penicillin V.
• Make sure you have enough stock of medication at home like analgesics, antibiotics and antipyretics.
• Follow all the general advice from the government and check for regular updates on the PHE (Public Health England).
• We may need to make changes to the scheduling of regular transfusions depending on the evolving national guidance.
• We may need to make changes to your child’s out-patient appointments including the option of considering telephone consultations.
• We may delay non-essential or routine investigations.

Frequently asked questions:

Is my child at increased risk of catching Covid-19?

No, your child’s risk of catching Covid-19 is the same as everyone else in the population.

Would my child get a more severe version because of the “underlying health condition”?

Looking at what is happening in other countries and having spoken to doctors in Italy where they also have sickle cell disease and Covid-19, there does not appear to be a higher risk of severe disease but we don’t really know.  However, the worry with sickle cell disease is that we miss other respiratory complications including acute chest syndrome or severe bacterial pneumonia (lung infection).

Are there risks from the blood transfusion itself?

Due to precautions being taken, we anticipate no additional risk of either being unable to find safely matched blood for blood transfusions, nor any additional risk of contracting Covid-19 from the blood itself.

Should my child stop their hydroxycarbamide because of the increased risk of infection?

Do not stop your child’s hydroxycarbamide, as it is protecting them from crises and having to come into hospital. We anticipate that many hospital patients will have Covid-19 infection, and therefore we would want to avoid patients with sickle cell disease coming into hospital with a crisis and contracting Covid-19 as an inpatient.  Hydroxycarbamide does not increase the risk of viral infections. We will continue monitoring blood tests at 3 monthly intervals.

We may make changes to where your child has their blood test and will let you know if this is the case. At present please continue to collect your child’s prescription as normal.

Please be advised that this patient information may become rapidly out of date, so please check the NHS website for up to date information.

• Supervise you child so they wash your hands often - with soap and water for at least 20 seconds.
• Use an alcohol-based hand sanitizer that contains at least 60% alcohol if soap and water are not available. This is particularly important after taking public transport
• Avoid touching your eyes, nose, and mouth
• Avoid close contact with people who are sick
• If your child feels unwell, keep them at home, and do not attend school
• Cover your cough or sneeze with a tissue, then throw the tissue in a bin. See Catch it, Bin it, Kill it
• Clean and disinfect frequently touched objects and surfaces in the home and work environment
• If you are worried about your symptoms, please call NHS 111. Do not go directly to your GP or other healthcare environment
• see further information and the Public Health England Blog

There is currently no vaccine to prevent COVID-19 acute respiratory disease. The best way to prevent infection is to avoid being exposed to the virus.

• Avoid large gatherings. Your child can continue to go to school unless there is national guidance to stop attending.
• Avoid handshakes and hugs
• Avoid contact with people who have recently travelled in areas of the world where coronavirus rates are high (this list will be updated on a regular basis)
• Keep your child warm.
• Make sure your child has had the flu vaccine
• Ensure your child has good compliance with their medication.
• Make sure your child drinks plenty of fluids.
• In case of raised temperature (38C and above), cough or shortness of breath to contact the GP Or 111 for advice. If your child is unwell with high temperatures and has low immunity then we recommend review in the emergency department. All splenectomised children and neutropenic children should present for clinical review.
• Chelation medication should be stopped if you have high temperatures.
• Please also contact our paediatric haematology service to inform the team of advice given tel 0203 246 0352, email bhnt.scatservice-rlh@nhs.net. If you choose to contact us by telephone out of hours, please leave a message and we will endeavour to contact you within 24 hours.
• The team will endeavour to contact you within 24 hours to advise further management.
• You may be asked to keep your child at home and self-isolate.
• Make sure you have enough stock of medication at home like analgesics, antibiotics and antipyretics.
• Follow all the general advice from the government and check for regular updates on the PHE (Public Health England).
• We may need to make changes to the scheduling of regular transfusions depending on the evolving national guidance.
• We may need to make changes to your child’s out-patient appointments including the option of considering telephone consultations.
• We may delay non-essential or routine investigations.

• Wash your hands often - with soap and water for at least 20 seconds.
• Use an alcohol-based hand sanitizer that contains at least 60% alcohol if soap and water are not available. This is particularly important after taking public transport.
• Avoid touching your eyes, nose, and mouth.
• Avoid close contact with people who are sick.
• If you feel unwell, stay at home, do not attend work or school.
• Cover your cough or sneeze with a tissue, then throw the tissue in a bin. See Catch it, Bin it, Kill it
• Clean and disinfect frequently touched objects and surfaces in the home and work environment.
• see further information and the Public Health England Blog

There is currently no vaccine to prevent COVID-19 acute respiratory disease. The best way to prevent infection is to avoid being exposed to the virus.

• Avoid large gatherings.
• Avoid handshakes and hugs.
• Avoid contact with people who have recently travelled in parts of the world where coronavirus rates are high: China, Korea, Italy, Iran (this list will be updated depending on evolution of the epidemic).  
• Stay warm.
• Make sure you have had the flu vaccine.
• Continue with Penicillin Prophylaxis.
• Drink plenty of fluids.
• If you are worried about your symptoms or have a raised temperature (37.8C and above), cough or shortness of breath please contact your GP or our service for advice:
  • Homerton Hospital switchboard (+44) 208 510 5555
    Specialist registrar: Bleep 726
    Clinical nurse specialist: Bleep 796/762
    Haematology secretaries:  (+44) 208 510 7309
• The drop-in service on MDU continues but with the following changes:
  • A smaller number of patients can be accommodated to avoid overcrowding and reduce the risk of person to person transmission of infection.
  • Patients will be required to remain in their seats and not interact with other patients.
  • Analgesia will be delivered every 20-30 minutes so that the maximum stay is no longer than 1 1/2 hours. This is to help accommodate more patients but also to minimise the time you spend in the unit.
  • This guidance may be changing depending on circumstances and new guidelines from the Department of Health
• If you have an incentive spirometer at home, then please use this. If in addition to breathlessness you have severe chest pain that stops you from taking a deep breath then you should attend for assessment (go to the emergency department). If you have any severe symptoms we recommend you attend the emergency department for review.
• Make sure you have enough stock of medication at home like pain killers, antibiotics and antipyretics.
• Follow all the general advice from the government and check for regular updates on the PHE (Public Health England).
• We may need to make changes to the scheduling of regular transfusions.
• Your out-patient appointments may be conducted via telephone. In person clinic appointments in the out patients may be cancelled until further notice. You will be contacted with more details by our service managers.
• We may delay non-essential or routine investigations.
• Check for updates on the Homerton sickle cell and thalassaemia website https://www.homerton.nhs.uk/sickle-cell-service-thalassaemia-service and on Twitter and Facebook @SCTHomerton, @DATsitsikas

Dr D.A. Tsitsikas Lead Consultant for  Sickle Cell and Thalassaemia

Ms Natasha Lewis Lead Nurse for  Sickle Cell and Thalassaemia

• Wash your hands often - with soap and water for at least 20 seconds.
• Use an alcohol-based hand sanitizer that contains at least 60% alcohol if soap and water are not available. This is particularly important after taking public transport.
• Avoid touching your eyes, nose, and mouth.
• Avoid close contact with people who are sick.
• If you feel unwell, stay at home, do not attend work or school.
• Cover your cough or sneeze with a tissue, then throw the tissue in a bin. See Catch it, Bin it, Kill it .
• Clean and disinfect frequently touched objects and surfaces in the home and work environment.
• If you are worried about your symptoms, please call NHS 111. Do not go directly to your GP or hospital.
• see further information and the Public Health England Blog

There is currently no vaccine to prevent COVID-19 acute respiratory disease. The best way to prevent infection is to avoid being exposed to the virus.

• Avoid large gatherings.
• Avoid handshakes and hugs.
• Avoid contact with people who have recently travelled in parts of the world where coronavirus rates are high: China, Korea, Italy, Iran (this list will be updated depending on evolution of the epidemic).  
• Stay warm.
• Make sure you have had the flu vaccine.
• Continue with Penicillin prophylaxis if you have been splenectomised.
• Drink plenty of fluids.
• If you are worried about your symptoms or have a raised temperature (37.8C and above), cough or shortness of breath please contact your GP or our service for advice:
  • Homerton Hospital switchboard (+44) 208 510 5555
    Specialist registrar: Bleep 726
    Clinical nurse specialist: Bleep 796/762
    Haematology secretaries:  (+44) 208 510 7309
•  If you have diabetes please monitor your blood sugars regularly.
• If you develop chest pain and difficulty breathing, you should attend for assessment (go to the emergency department). If you have any severe symptoms we recommend you attend the emergency department for review.
• Make sure you have enough stock of medication at home like pain killers, and paracetamol.
• Follow all the general advice from the government and check for regular updates on the PHE (Public Health England).
• We may need to make changes to the scheduling of regular transfusions.
•  We may need to make changes to your out-patient appointments or conduct the consultation by telephone.
• We may delay non-essential or routine investigations.

Check for updates on the Homerton sickle cell and thalassaemia website https://www.homerton.nhs.uk/sickle-cell-service-thalassaemia-service and on Twittter @SCTHomerton, @DATsitsikas

Dr D.A. Tsitsikas Lead Consultant for Sickle Cell and Thalassaemia

Ms Natasha Lewis Lead Nurse for Sickle Cell and Thalassaemia

Patients with Beta thalassaemia major – the most severe type of thalassaemia – cannot make normal red blood cells and do not produce enough haemoglobin. This leads to severe anaemia and if left untreated can cause consequences such as delayed growth, bone deformities and reduced levels of energy.

Usually the treatment for Thalassaemia Major is regular blood transfusions every 3-4 weeks for the rest of the person’s life span. Learn more from the UK Thalassaemia Society website

• child and adult services from birth upwards (Royal London Hospital paediatric Haematology)
• drop in service for nurse assessment and advice
• welfare and benefits advice
• social care advice; employment, education, housing, self-awareness and goal setting
• therapy clinic hydroxycarbamide and chelation
• poly clinics for patient review in community setting
• genetic counselling
• pre-conceptual and opportunistic screening
• outreach and awareness projects in the local community
• awareness days - teachers/colleges/universities/employers
• home visits and nurse assessments
• discharge follow up
• psychology poly clinic
• new birth visits.

Congratulations!
We recommend you book your antenatal care as soon as possible, ideally by 10 weeks.
If you wish to book your maternity care with us you can either

• complete the maternity self-referral form on our website here
• call our maternity helpline, 020 8510 5955 anytime between 10am and 6pm; you will speak to an experienced midwife who can refer you
• come to the hospital antenatal clinic and complete a self-referral form and email it to huh-tr.antenatalreferrals@nhs.net
• Make an appointment with your GP who can refer you

Please specify if you know you a sickle cell/thalassaemia carrier or have an unusually high haemoglobin variant on your referral. If you have Sickle Cell disease then please contact the specialist midwife directly on 020 8510 7656 to book your care.