Sickle cell and thalassaemia

Haemoglobinopathy Coordinating Centre

Specialist haemoglobinopathy service

Expert care for sickle cell, thalassaemia and rare inherited anaemias

We are a specialist haemoglobinopathy centre, providing expert care for adults with conditions that affect red blood cells. These include sickle cell disease, thalassaemia, and other rare inherited anaemias.

As a specialist centre based at The Royal London Hospital, we support patients and families across east London, including at Whipps Cross and Newham hospitals, as well as people in Essex and the South East through our role as a haemoglobinopathy coordinating centre. Your care is led by a specialist team and provides care in line with national guidance and best practice.

We work closely with local hospitals, community nurses and GPs so your care is joined up, safe and consistent — whether you are at home, in clinic, or in hospital.

Specialist care for blood conditions

Personalised for you

Your care is led by a specialist haemoglobinopathy team, with support from nurses, doctors and other professionals who understand your condition.

We work closely with:

Hospital teams
Community sickle cell and thalassaemia nurses
GPs and local services

Together, we help manage your condition day to day, reduce complications, and plan ahead for things like transfusions, pain management or pregnancy care.

Your care team will:

Help you understand your condition
Monitor your health regularly
Adjust your treatment when needed
Support your physical and emotional wellbeing

We also run specialist clinics where experts from different teams work together to plan your care. These include joint clinics with kidney, hormone, pregnancy and pain teams, as well as general blood clinics.

If you’re coming in for treatment, our day unit is open Monday to Friday, 9am to 5pm, by appointment only.

If you are unwell

If you are unwell

What to do in an emergency or painful crisis

If you or your child are very unwell, go straight to A&E or call 999.

If you attend A&E with a sickle cell pain crisis, our clinical teams can access your care plan. We aim for pain relief to start within 30 minutes. The emergency team can contact the haemoglobinopathy team at any time, day or night.

If admission is needed:

You will be cared for by the hospital medical team
A specialist haematology team will review you
Your care continues even if you are not on a specialist ward

Your appointment

A consultant talks to a cancer patient at St Bartholomew's Hospital

What to expect from your appointment and care

Clear guidance to support you at every step

Our dedicated specialist nursing team works alongside our experienced day unit nursing team to provide comprehensive, high‑quality patient care.

You may have appointments:

Face to face
By phone

During appointments, your team will:

Review how you’re feeling
Check blood results and treatments
Talk through next steps

After your visit, you and your GP will receive a letter explaining what was discussed and any changes to your care.

If you need to cancel or change an appointment, please let us know as soon as possible so we can offer it to another patient.

Community sickle cell and thalassaemia nurses work closely with your hospital team to support you at home. They can help with:

managing your symptoms
providing education and advice
supporting your emotional wellbeing and
offering care during pregnancy and after birth.

We work with community centres in Hackney, Newham, Waltham Forest and Tower Hamlets.

Further information

Female patient getting a blood test by healthcare professional

Find out more

About blood conditions and treatments

Sickle cell disease - NHS

Thalassaemia - NHS

Anthony Nolan

Sickle Cell Society

UK Thalassaemia Society

Diamond Blackfan Anaemia (DBA) Charity

Congenital Anaemia Network (CAN)

Thalassaemia International Federation

National haemoglobinopathy panel

North East London Holistic Wellness Events for Sickle Cell Warriors and Carers

Research

New treatments and research

Looking ahead with confidence

There are new treatments or research studies underway for sickle cell, thalassaemia and rare anaemias. Some patients may be able to take part in trials or access new therapies as they become available.

Your specialist team can explain:

What options may be suitable for you
What research is happening locally or nationally

Information for professionals

Team of doctors and nurses in scrubs at St Bartholomew's

For healthcare professionals

Working in partnership to improve patient outcomes

The Haemoglobinopathy Coordinating Centre (HCC) provides specialist advice and coordination for complex cases and shared care across the network.

Referrals to our services should be made in line with our guidance:

MDT meetings (monthly, via Microsoft Teams)

Referrals for the multidisciplinary team meeting should be sent by a clinician to our team by 5pm on the Friday before.

We discuss cases on a Mondays, 3pm-4.30pm.

The meetings are hosted by The Royal London Hospital and chaired by the HCC leads. Invitations are sent out in advance.

If you are a clinician within the East London and Essex Sickle Cell Disease HCC or the London and South East Thalassemia/Rare Anaemia HCC and are not on the distribution list, please contact us.

Adult sickle cell: first Monday of the month
Thalassaemia (adult and paediatric): second Monday on month
Paediatric sickle cell: third Monday of the month
Neuroradiology (head, neck and spinal scans are reviewed with a neuroradiologist): fourth Monday of the month

M&M HCC MDT Proforma [docx] 34KB

MDT Thalassaemia Pro Forma [docx] 35KB