1. Sickle Cell & Thalassaemia GP Study Day Community Nursing
Dr Lola Oni OBE
Specialist Nurse Consultant / Professional Service Director
Brent Sickle Cell & Thalassaemia Centre
London Northwest University Healthcare NHS Trust

2. Aim & Objectives To promote an understanding of Community
Specialist Nursing Care:
Health & social challenges of living with sickle and thalassaemia
Referral and care pathways
Role of the sickle & thalassaemia specialist community nurse
Resources to support primary care

3. Health & social challenges of living with sickle cell disease
Chronic unpredictable life long disease with early onset of signs & symptoms
Pain and hospitalisation
Education
Psychological impact – stigma, labelling
Social impact
Family dynamics
Frequent contact with health services

4. Health & social challenges of living with Thalassaemia Major
Chronic life long disease with early onset for medical interventions and treatment
Regular blood transfusions
Chelation therapy
Risk of complications
Psychological impact – stigma, labelling
Social impact – education, employment
Family dynamics & relationships
Frequent contact with health services

5. Care pathway General patient population Preconception Antenatal
Patients with disease states
Contact the local community specialist service via the generic i.e.:
Brent & Harrow -
Hammersmith & Fulham -
Hounslow -

6. Role of the sickle & thalassaemia specialist community nurse
Counselling of screen positive pregnant women and partners [national screening programme]
Management of identified newborn babies with carrier and disease states [national newborn screening programme] (store disease & carrier results)
Community care and support of children & adults
Raising public awareness
Education of health, allied & other professionals
Advocacy / policy/ audit/ research

7. Referral to community Centre
Written referral to community team
Provide patients biographical details including contact number (s)
Brief summary of reason for referral
Copy of laboratory report (if relevant)
Social issues to be taken into consideration
Ensure patient is aware of referral

8. Acute & Community Specialist Teams in NW Sector
Contact details of key specialist team members are listed in the GP pack that is being updated and will be available via the Haemoglobinopathy Network [via Brent Centre website] shortly

9. Resources to support primary care
Integrated Multidisciplinary team [acute & community – doctors, nurses, psychologists, social worker
Specialist community Centre
Educational programmes & materials for professionals
Patient education programmes
Specialist websites

10. Useful Websites www.sickle-thal.nwlh.nhs.uk www.sct-screening.nhs.uk

11. National Service Proposals
NHS England proposes from 2019 development of a coordinated approach to Haemoglobinopathy
Services provision nationally:
Local Haems Team (LHT)
Specialist Haemoglobinopathy Teams (SHT)
Haems Coordinating Centre (HCC)
10 Sickle & 4 thalassaemia
National Haems Panel

12. THANK YOU