Community sickle cell and thalassaemia services : University College London Hospitals NHS Foundation Trust

Community sickle cell and thalassaemia services

This information sheet explains about the support that is available to people with sickle cell and thalassaemia. If you need a large print, audio, braille, easy read, age-friendly or translated copy of this leaflet, contact the patient information team at uclh.patientinformation@nhs.net. We will do our best to meet your needs.

Introduction

The sickle cell and thalassaemia community services are an excellent source of support, contact, advice and advocacy for people with sickle cell disease and thalassaemia and their families. These services are an essential part of the NHS antenatal and newborn screening programme. They also offer advice to carriers about inheritance of these conditions.

All our sickle cell and thalassaemia community services take a holistic approach to care. This means that they recognise and address the physical, emotional and social needs of patients and families affected by sickle cell disease or thalassaemia.

The community centres are located in areas where sickle cell and thalassaemias are common. The service you can attend will depend on your borough and/or address. Please note that each service can differ in size from one person to a whole team of nurses, counsellors and other healthcare professionals.

The Whittington Health team provides support to people living in Camden and Islington. If you live outside of these boroughs, the team can advise you who may be able to support you. On occasion, they may be able to offer that support themselves.

The team consists of specialist nurses (PEGASUS, or Professional Education for Genetic Assessment and Screening, specialist practitioners, and the community matron), clinical psychologist and administrative staff. They aim to provide a high-quality personalised care for all service users. The team works closely with local hospitals, GPs and other primary care and community healthcare staff, and with local authority. They also work in partnership with government and patient organisations.

Contact details: Sickle Cell and Thalassaemia Centre, Whittington Health

17a Hornsey Street, Holloway, London N7 8GG

Tel: 020 3316 8853/8854

Specialist nursing service
Specialist support for patients with highly complex needs
Genetic counselling to support the local antenatal and newborn screening programmes
CBT (cognitive behavioural therapy) to aid psychological support in the community
Testing of blood for sickle cell and thalassaemia, and other red blood cell conditions
Pre-conceptual screening and counselling
Health promotion
School visits to educate staff teaching about haemoglobin disorders
School nurse training
Education and training programmes for midwives, health visitors, medical students and pre-registration nurses
Community awareness for the general public, health and non-health professionals
Resource and information centres (leaflets, articles)
A drop-in service so that patients with problematic issues have access to timely advice and support without an appointment