The Cardiff Sickle Cell & Thalassaemia Centre was established in 1990. The service is managed by Cardiff and Vale University Health Board, and is contracted to provide a comprehensive quality service for the populations of Cardiff and the Vale of Glamorgan
This is a nurse-led centre providing a quality service to a marginalised group of patients. To ensure our service is provided in a climate of openness and inclusiveness, we are based in the heart of a traditionally culturally mixed population with easy access from the Cardiff City Centre, and have an open door policy. The service is staffed by a Co-ordinator / Counsellor, a Nurse Counsellor and an administrator.
We provide written material in eleven languages, including Welsh and English, and work in a spirit of co-operation and collaboration with all other professionals including doctors, social workers, linkworkers and interpreters.
This is a nurse-led centre providing a quality service to a marginalised group of patients. To ensure our service is provided in a climate of openness and inclusiveness, we are based in the heart of a traditionally culturally mixed population with easy access from the Cardiff City Centre, and have an open door policy. The service is staffed by a Co-ordinator / Counsellor, a Nurse Counsellor and an administrator.
We provide written material in eleven languages, including Welsh and English, and work in a spirit of co-operation and collaboration with all other professionals including doctors, social workers, linkworkers and interpreters.
What We Do
The Cardiff Sickle Cell & Thalassaemia Centre:
- provides information, screening and counselling to those at risk from haemoglobinopathies
- targets and educates the communities at risk
- provides support advice and co-ordination of care to affected families
- acts as a specialist resource for healthcare professionals
- holds the patient register for Wales.
Why is there a Sickle Cell & Thalassaemia Centre in Cardiff?
In the 80’s seven children were born in South Wales with Sickle Cell and Thalassaemia disorders. Very little information support or advice was available for the parents of these children. There was a push from the community for services to be provided. This led to a research project being funded in 1985.
The research showed a significant number of patients in the area and some 30,000 Cardiff and Vale people at risk of carrying the disorders. This resulted in permanent funding for the Centre.
More than 100 people with the disorders have used this service. Currently 50 people with the disorders are in contact with the Centre. The laboratories at University Hospital Llandough and the University Hospital of Wales automatically send results of Haemoglobinopathy screening tests to the Cardiff Sickle Cell & Thalassaemia Centre. Staff at the Centre review 2,500 haemoglobinopathy results and follow up approximately 250 primary referrals a year. We always approach the person who requested the test prior to any contact being made with their patients.
There are approximately 12,500 people with Sickle Cell Disorders and about 600 with Thalassaemia Major in the UK. More than 200 babies are born in this country each year with these disorders (the second highest number in Europe after Italy), making these conditions the most common inherited disorders in many urban centres in Europe.
NB approximately 8,000 people in the UK have Cystic Fibrosis, the most common genetic disorder in Northern Europeans. 1 in 23 White British people carry Cystic Fibrosis.
