What are sickle cell disorders and thalassaemia?
Sickle cell and thalassaemia are genetically inherited haemoglobin disorders.
Haemoglobin is a protein in the red blood cell which helps to carry oxygen throughout the body and also gives the blood its red colour.
These conditions present either as an illness or healthy ‘carrier/trait’ states. The illnesses, although different, can lead to 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.
The Leicester service is based at the Leicester Royal infirmary, in the Osborne Building and the Children’s Hospital in Windsor building with outreach services to Northampton and Kettering. We work as a network across the East Midlands, with other specialist services offered from Nottingham University Hospitals NHS Trust.
Who is the service for?
- Adults and children with any type of haemoglobin disorder such as sickle cell , thalassaemia or related conditions.
- Antenatal women with abnormal haemoglobin who are booked to deliver within Leicester and Leicestershire.
- New-born babies identified as having a major haemoglobin disorder or found to be a carrier of abnormal haemoglobin following new- born screening.
- Members of the public who have been identified as having abnormal haemoglobin following routine blood test or those self-referring for information, blood testing or genetic counselling.
Activities carried out by the Service
- We offer specialist service to children and adults who have been diagnosed with a major haemoglobin disorders such as sickle cell disorder or thalassaemia major. The service provides care from Pre–conception, pregnancy, birth, childhood, through to end of life.
- We work with the UK Standards of clinical care for children and adults with sickle cell and thalassaemia.
- We promote self-management.
- Advocacy and support.
- Advice on health and social issues relating to sickle disease and thalassaemia.
- Welfare and benefits advice for people with a major haemoglobin disorders and sign posting to other departments.
- Liaison with other healthcare professionals.
- We provide schools, colleges and places of employment with information and support regarding the impact of living with a haemoglobin disorder
Antenatal and newborn screening programmes
- Genetic counselling to support the local antenatal and newborn screening programmes
- Screening of fathers of babies whose mothers are found to be carriers of abnormal haemoglobin
- Provide a nurse-led counselling service for ‘carrier couples’
- Follow the standards for the linked antenatal and newborn screening programme for sickle cell and thalassaemia.
Screening and counselling
- Screening test for sickle cell disorder, thalassaemia and other unusual haemoglobin is available; this can be done by the local GP.
- The test is called Full Blood Count and Haemoglobin Electrophoresis.
- The test is important, especially if you are planning to have children, or prior to an operation requiring an anaesthetic.
- Genetic counselling for anyone identified as being a carrier for a haemoglobin disorder.
- Pre-conceptual screening and genetic counselling.
Education
- Training, education and awareness programmes about sickle cell disorder and thalassaemia and other related disorders for health care professionals and the local community.
- Acts as a source of expertise and advice to health care professionals locally and nationally in relation to sickle cell and thalassaemia.
- We liaise with GP’s and other primary healthcare professionals. We also work in partnership with statutory and non-statutory bodies.
- We aim to provide a linguistic and culturally sensitive service whenever possible.
Patient management occurs both within the hospital during in-patient admissions or within clinics to allow outpatient follow up.
Clinics
There are two Haemoglobinopathy 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 and a radiologist.This clinic is held at the children’s outpatient department in the Windsor Building.
The adult clinic is held on Tuesday/Thursdays by lead consultant haematologist, specialist registrar and clinical nurse specialist. The clinic is in the Osborne Building. The team works closely with a psychologist.
Equality and Diversity
So that we can meet the needs of people from different backgrounds we have screening information in Hindi, Urdu, Punjabi, French and Portuguese. We can also arrange for an interpreter in most languages as required.
Working relationship
We work closely with and support the local hospitals such as Kettering and Northampton Hospitals.
The multidisciplinary team consist of adult and paediatric lead doctors, clinical nurse specialists, a data manager, and adult and children’s psychologists. The East Midlands Sickle Cell and Thalassaemia Network meet three monthly to discuss complex cases in the region.
Location
Ground Floor, Osborne Building Leicester Royal Infirmary Leicester LE1 5WW
For Advice:
We can be contacted during office hours:
Monday – Friday 09.00am – 5.00pm
Telephone: 0116 258 6081
Messages can be left on the telephone number above
Referral
We accept referral from any health professional including GP, hospital doctor, Specialist Nurse, Midwife or allied health professional and self- referral. Referral can be made by phoning or writing to the haemoglobinopathies team using the contact details above.
Information Leaflets
Please click here for the information leaflets page.
More information and links
54 Station Road, London, NW10 4UA
020 8961 7795
020 8961 8346
info@sicklecellsociety.org
UK Thalassaemia Society, 19 The Broadway, Southgate Circus, London, N14 6PH
Tel: 020 8882 0011
Freephone advice line: 0800 7311 109
office@ukts.org
Students Support
Student Disability Advice and Support
Tel: 0116 257 7595 (option 1)
Patient Advice and Liaison Service (PALS)
- PALS is a service for patients and relatives. The aim is to provide a confidential listening and support service, and also information about the hospital, services and treatment provided. Click here for more information.
If you have any compliments or complaints please contact the PALS service on freephone: 0808 178 8337
