The Team consists of 2 Specialist Nurses and has Psychology and Administrative support.
The main role of the service is to provide a culturally sensitive service that promotes quality of life and optimal health of all children with Sickle Cell Disease and Thalassaemia. This is delivered through education, compassion, and support.
Our aim is to:
- to deliver the newborn blood spot results and diagnosis to families who have a baby with a Sickle Cell Disorder or Thalassaemia.
- engage and empower families through compassion, education, and support to promote the health and quality of life of the child and young person with Sickle Cell and Thalassaemia Disorders in the community.
- to assess the health needs of the child and young person with an emphasis on health promotion and self-care to prevent admission to hospital wherever possible.
- to maintain the child’s health and safety at school. The team ensures that every child has an individualised school health care plan and offered annual staff training.
- the specialist nurses play a pivotal role in promoting/monitoring and supporting compliance with specialist medication and compliance.
- to work with young persons to develop an individual plan of care to optimise successful transition to adult services.
Contact the service
Tel: 01923 470680
- How the service is provided
- Who is eligible for the service
- What will happen at your appointment
- Useful information
- Making a referral
- Patient experience
How the service is provided
The service covers all children with a haemoglobinopathy condition who are under the care of a Hertfordshire GP.
Children are seen by the specialist nurses in the community, at home, school, nursery, and clinic settings.
The specialist nurses attend the 2 specialist clinics held in Hertfordshire at Watford General and QE11 Hospital bi-monthly.
The specialist nurses are involved in communicating with all multi-disciplinary professionals involved in the child’s care.
Who is eligible for the service
All children aged 0-19 years with a haemoglobinopathy condition, identified through the national blood spot screening programme or children who have moved into Hertfordshire from abroad or other areas.
What will happen at your appointment
Once a referral is received a home visit will be arranged to carry out an assessment of the child or young person’s health needs with an emphasis on health promotion and self-care to promote quality of life.
The service works closely with other services such as: acute Consultants and hospital staff, GPs, community doctors, Health Visitors and School Nurses, nursery workers, social services, education, children’s professionals, voluntary sector, parent and/or carer and the blood spot screening programme.
Once a referral is received a home visit will be arranged to carry out an assessment of the child or young person.
Making a referral
Referrals of children 0-18 years who have a sickle cell disorder/thalassemia can be made by professionals or by families who are registered with a GP in Hertfordshire.
Referrals can be emailed to firstname.lastname@example.org or by telephone 01923 470680 opt 1, opt 3.
We value the engagement of our patients and their families to support improvements to our service and invite them to complete Friends and Families Tests (FFT), these are made available at each of our sites and can also be sent via text message/QR code. We utilise feedback to guide our You Said, We Did developments.