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Sickle Cell and Thalassaemia

What is sickle cell and thalassaemia?

Sickle cell and thalassaemia are inherited genetic conditions that predominantly, but not exclusively, affect people of African, Caribbean, Mediterranean and Asian origins. For more information and useful reading on sickle cell and thalassaemia, please contact the centre.

About the 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 Road. 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.

Who is the service for?

• 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.

What does the service do?

• Antenatal and newborn genetic counselling: for people with sickle cell and thalassaemia, for all expectant mothers and newborn babies with unusual haemoglobin types.
• Psychology: One to one psychology therapy and group work sessions to help people with sickle cell to cope with depression, anxiety and increase pain management skills.
• Community Matron: case management by a community matron for sickle cell patients with highly complex needs. The centre is proud to have the first and only community matron for sickle cell in the UK.
• Social Work: specialist social work advice, assessment and support involving liaison with community care and hospital social work teams, preparing and agreeing care packages.
• Drop in: one stop shop service every Wednesday from 9.00am to 12.30pm for people with sickle cell to access our service and to reduce waiting times for people in urgent need of assistance.
• Public information: acting as a resource centre for information and advice on sickle cell and thalassaemia, which is available throughout the week.
• Health education and promotion: to raise awareness of sickle cell and thalassaemia in the community and among health and social care professionals.
• Professional education for genetic assessment and screening (PEGASUS): The centre is designated as a national PEGASUS training centre for specialist practitioners. This is the recommended course (NHS Antenatal Standards) for professional practice in England. The centre also has responsibility for training of PEGASUS front line practitioners in London, the South East and East of England.
• Specialist expertise and support: the social worker, community matron, psychologist and genetic counsellors provide specialist support to generalist practitioners across primary care, community care, secondary care and local authority settings

How are clients referred to the service?

• Any health and social care professional, including GPs, hospital doctors and social workers, can refer patients by phoning or writing to the centre.
• Screening laboratories (Great Ormond Street, Central Middlesex, University College London and Whittington Hospitals) routinely refer clients to the centre as standard procedure.
• Self referrals from any member of the public, carers, family members and individuals with or at risk of sickle cell and thalassaemia are accepted.

Sickle Cell Support Group

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.

Membership of the group is open to:

• 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.

Activities of the group include:

• 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.

Group meetings:

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.

• Sickle Cell Support Group leaflet

Top tips for keeping well

• Exercise within limit
• Keep warm
• Avoid social isolation and stress
• Take medication
• Eat a healthy diet to include plenty of fruits and vegetables.
• Keep hospital appointments for regular check ups.
• Adequate fluid intake to maintain hydration.

Useful links

Antenatal and Newborn Screening http://sct.screening.nhs.uk/default.htm

Sickle Cell Society http://www.sicklecellsociety.org

Sickle and Thalassamia Association of Counsellors (STaC) http://www.stacuk.org

Sickle Cell Information Centre http://www.scinfo.org

UK Forum on Haemoglobin Disorders http://www.haemoglobin.org.uk

UK Thalassaemia Society http://www.ukts.org