Sickle cell service & Thalassaemia Service

Sickle Cell & Thalassaemia belong to a group of genetic blood disorders known as haemoglobinopathies. These disorders comprise of different types of Sickle Cell and Thalassaemia.

Services available
We provide Acute and Primary care for patients with sickle cell & thalassaemia conditions

Patient led support group
Solace SG provide peer support, advice, drop in sessions, and community outreach to people with SCD & Thalassaemia, as well as their parents, carers and friends. They also provide a monthly gathering on the 3rd Tuesday of every month  5.30-7.30pm in the Matthew Duncan seminar room. Here members can share experiences, get holistic health care and benefits advice.

Psychology services
Our psychology team can support people living with sickle cell disease & thalassaemia and help to promote well-being and improve quality of life. Psychologists are trained healthcare professionals who help people manage their emotional concerns over a specified period of time. They do not prescribe medication.

The psychologists can provide support and help with a range of problems, such as:

  • Coping with pain at hospital and at home
  • Adjusting to being in hospital or having to come into hospital frequently
  • Managing other life problems, which affect how you cope with your illness 
  • Dealing with worries about your future
  • Managing family and relationship problems
  • Improving your self-confidence 
  • Coping with memory and concentration problems
  • Dealing with a fear of needles or blood transfusions
  • Improving communication with nurses, doctors and other hospital staff

What is sickle cell disease?

Sickle Cell Disease is the most common serious inherited condition in the UK. There are approximately 12,500 people who suffer from this disease in England and an estimated 240,000 carriers of Sickle Cell in England. Being a carrier of a haemoglobinopathy means that you do not have the disorder yourself and carriers will be generally healthy. The sickle cell and thalassaemia service has approximately 600 patients ranging from newborn upwards. Homerton sees patients from 16 years old and upwards.

Sickle cell & Thalassaemia disorders are inherited blood disorders that affect the red blood cells. They are genetically inherited which means that you cannot get sickle cell or thalassaemia from touching. It is passed on from your parents. These genes are more commonly found in people from Africa, Caribbean, Mediterranean, Middle East, Asia including South East Asia and South America. However it is not exclusive to those areas.

People with sickle cell disease have red blood cells that contain mostly haemoglobin* S, an abnormal type of haemoglobin. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels.

This causes severe anaemia and can cause intense pain anywhere in the body as well as causing damage to major organs and infections. Episodes of pain and other symptoms are often called ‘crises’. A crisis is usually what will cause a patient to come into hospital.
Learn more from the Sickle Cell Society website

What is 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

Hospital services

  • for adults aged 16 years and upwards
  • drop-in service at Medical Day Unit (MDU) Mon-Fri 9am-5pm
  • multidisciplinary management of sickle cell & Thalassaemia
  • specialist laboratory diagnostic services
  • in-patients management of Sickle cell & Thalassaemia 
  • modern, evidence-based management in the use of blood transfusion programmes, hydroxycarbamide and a vaccination service
  • automated exchange transfusion services
  • Sickle Cell and Thalassaemia psychology services

Community services

  • 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.

Thinking about having a baby?

If you are a sickle cell/thalassaemia carrier or have an unusual haemoglobin variant and are thinking about having a baby, then your partner needs to be tested.

When both parents are carriers, the baby may be affected (1 in 4 chance) with possible serious consequences. Identifying parents who are carriers for haemoglobin disorders before conception allows you to make informed choices about your pregnancy.

Please contact the Sickle Cell and Thalassaemia Service to have your partner tested for pre-conceptual counselling

Positive pregnancy test

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.