Sickle cell and thalassaemia are inherited blood disorders that affect haemoglobin — the protein in red blood cells responsible for carrying oxygen around the body and giving blood its red colour.
These conditions can appear in two main forms: as a serious illness or as a healthy carrier state, often referred to as having a “trait.” While carriers are usually well, the illness forms of these disorders can cause serious, sometimes life-threatening complications.
These conditions affect mostly people whose ancestors originate from Africa, the Caribbean, the Mediterranean the Middle East and Asia including India, Pakistan, Bangladesh and South East Asia.
Our specialist haemoglobinopathy service is based at Leicester Royal Infirmary, within the Osborne Building and the Children’s Hospital in the Windsor Building, with outreach clinics in Northampton and Kettering. We are part of a wider East Midlands network, working closely with other expert centres including Nottingham University Hospitals NHS Trust, to ensure high-quality, coordinated care across the region.
Who is the service for?
- Adults and children with conditions such as sickle cell, thalassaemia, related disorders, or rare anaemias.
- Pregnant women with unusual results from antenatal haemoglobin screening, who are planning to give birth in Leicester or Leicestershire.
- Newborn babies identified through screening as having a major haemoglobin disorder or as carriers of an unusual haemoglobin.
- People who have been identified as having a significant unusual haemoglobin following routine haemoglobin Screening blood test.
Antenatal and Newborn Screening Programmes
- Delivery of the Antenatal screening programme following the reporting of an unusual haemoglobin identified from antenatal screening.
- Nurse Led Clinic providing Information, haemoglobinopathy results and genetic risk assessment and counselling in the Jarvis Outpatients Clinic at Leicester Royal Infirmary.
- Providing Haemoglobin Screening to fathers of babies whose pregnant partners are found to be carriers of abnormal haemoglobin during antenatal screening.
- Counselling to support women or couples at risk of a baby with a major haemoglobin disorder including offer of pregnancy choices and further diagnostic testing.
- Referral to other services including the Obstetric and Fetal Medicine and Clinical Genetics teams.
- Delivery of Newborn screening results and genetic counselling to parents of babies, who have been identified as carriers of an unusual haemoglobin or as having a suspected major haemoglobin condition from the Newborn screening programme.
- Follow the standards for the linked antenatal and newborn screening programme for sickle cell and thalassaemia.
Screening and counselling
Preconception genetic counselling for couples at risk of having a baby with a major haemoglobin disorder.
- Support for Individuals self-referring for information and signposting.
- General Advice on how to access a haemoglobin screening test for sickle cell disorders, thalassaemia and other unusual haemoglobin. This is usually arranged with your own GP, a Haemoglobin Screening test requires 2 blood samples being sent with separate blood request forms
- Haemoglobin Electrophoresis Blood Test on a special haematology request form.
- Full Blood Count Blood Test on a combined pathology request form.
- If you think you may be a carrier or have an unusual haemoglobin condition – this test is important, especially if you are planning to have children, or prior to an operation requiring a general anaesthetic.
- Provision of information including genetic counselling for anyone identified as being a carrier for an unusual haemoglobin or having a haemoglobin disorder; this may be via letter, telephone or face to face in clinic depending on the circumstances.
- Information for healthcare professions such as Midwifery and General Practice Colleagues regarding haemoglobin screening results that have identified unusual results such as Haemoglobin S,C,D,E,O Arab, Hb Lepore, Alpha, Beta or Delta Beta thalassaemia or hereditary persistence of Fetal haemoglobin.
Clinics
- The children’s clinic: is held on Thursdays and a multidisciplinary clinic is held once a month by the lead paediatric doctor, psychologist, clinical nurse specialist, Transition CNS and a radiologist. This clinic is held at the children’s outpatient department in the Windsor Building.
- The adult clinic: is held on Tuesday or Thursdays by lead consultant haematologist, specialist registrar, clinical nurse specialist and Transition CNS. The Tuesday clinic is in the Coleman Centre, at the Leicester General Hospital, The Thursday clinic is in the Osborne Building Leicester Royal Infirmary. The team works closely with a psychologist.
Working relationships
UHL is a Specialist Haemoglobinopathy Team, we work closely with our Local Hospital sites in Northampton, Kettering and Peterborough. UHL also hosts the Haemoglobinopathy Co-ordinating centre for the East Midlands, and works closely with all our Network hospital sites: Northampton, Kettering, Peterborough, Nottingham, Burton, Derby and Lincoln.
The Multidisciplinary team consists of Adult and Paediatric lead doctors, clinical nurse specialists, support workers, adult and paediatric psychologists, Lead Nurse, Network manager, Data manager and MDT co-ordinator. The East Midlands Sickle Cell and Thalassaemia Network meet monthly to discuss complex cases in the region.
Contact details
Anyone wanting clinical advice should contact their local team contact. Non urgent messages can be left on the answerphones. The team work during office hours: Monday – Friday 9am to 5pm excluding Bank Holidays.
The Haemoglobinopathy main office
Telephone: 0116 258 6081
The Antenatal and Newborn Haemoglobinopathy screening office
Telephone: 0116 2586158
Referral
We accept referrals from any health professional including GP, hospital doctor, Specialist Nurse, Midwife or allied health professional. Self referral can be made for information or signposting but not for referral to a clinical team.
Referrals can be made by the usual hospital referral channels, the team may be able to support or direct you to the correct team – if you have a query about referral please use the contacts above.