Camden Sickle Cell and Thalassaemia Service

This is a shared service for NHS Islington and Camden PCT. The service is delivered from the Sickle Cell and Thalassaemia centre based in Holloway. The centre provides dynamic, integrated, holistic services that place people with, or at risk of, sickle cell and thalassaemia at the centre of care; recognising and addressing the complex needs of individuals and families affected by these conditions.

• Adults and children with any type of haemoglobin disorders such as sickle cell disease or thalassaemia
• Antenatal women with abnormal haemoglobin who are routinely referred from the maternity departments at UCLH and the Whittington hospitals
• New babies of Islington and Camden residents referred from the new born screening programme for sickle cell disease
• Members of the public self-referring for information, blood testing or genetic counselling

The centre is proud of its long history of working with users. The support group was launched by the Mayor of Islington Mrs Valda James on 24 April 1989. The group was primarily set up to be a forum for people with sickle cell and thalassaemia diseases to meet and get to know and support each other.

This is a service user led group that is managed by the executive committee members who are elected among the users of the service. The committee is responsible for planning and implementing group activities.

Centre staff can assist in organising guest speakers - both professionals and non-professionals - to provide an overview on care and management of sickle cell and thalassaemia.

• All people with sickle cell and thalassaemia who live within Camden and Islington.
• Families and carers of people with sickle cell and thalassaemia.
• People with sickle cell and thalassaemia who use the local hospitals - Whittington, University College London and Royal Free hospitals.

• Peer and social support to minimise isolation and to promote mutual learning through shared experience.
• Group members share their coping skills in discussions about diet, exercise and employment.
• Group members support each other through home and hospital visits.
• Patient education through health education talks that are carried out during group meetings to raise the users’ knowledge of the condition and to increase the users’ understanding of support and care services to promote independent living.
• Group members also organise and carry out community events to raise awareness of sickle cell and thalassaemia.

The group meets once a month on the first Friday of the month at the Sickle Cell and Thalassaemia Centre, from 6.00pm to 9.00pm.

This group is run by our haemoglinopathy counsellor and a specialist paediatric nurse (sickle cell), and takes place every other month from 4.00-6.00pm.