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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
Please contact the service if you would like some information or to discuss your child or young person by either:
Telephone: 01923 470680 opt 1, opt 3
Email: hct.sicklenurse.herts@nhs.netPlease note any child or young person must be registered with a Hertfordshire GP to access this service.
- Address: St Alban's Health & Wellbeing Centre, Civic Centre, St Albans, AL1 3JE, St Albans, AL1 3JE
- Reception phone number: 01923 244366
- 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.
Specialist Clinics are held at:
- Watford General Hospital, Children's Sickle Cell Clinic
Vicarage Road
Watford
WD18 0HB
Clinics are held bi-monthly and specialist support is provided by Imperial College Healthcare NHS Trust.
- Queen Elizabeth II Hospital
Howlands
Welwyn Garden City
AL7 4HQ
Clinics are held bi-monthly on the first Friday of the month and specialist support is provided by North Middlesex NHS Trust.
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, registered with a Hertfordshire GP. These children and young people may be identified by the national blood spot screening programme or those that move into the area and register with a Hertfordshire GP.
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.
Useful information
A parent's guide to managing sickle cell disease
The Sickle Cell team are based in Peace Children’s Centre in Watford but cover the whole of Hertfordshire. Care is provided via visits to homes, schools, and nurseries as well as clinics held in community and hospital venues. London Hospital specialists attend clinics in order to prevent families travelling into London for care.
Useful websites
NHS Choices: Sickle cell anaemia
www.nhs.uk/Conditions/sickle-cell-anaemia/Pages/introduction.aspx
NHS Choices: Thalassaemia
www.nhs.uk/conditions/Thalassaemia/Pages/Introduction.aspx
Sickle Cell Society
Supports and represents people affected by sickle cell disease to improve their overall quality of life.
www.sicklecellsociety.org
Thalassaemia Society
Information, education and research for those affected by or working with thalassaemia.
www.ukts.org
GOV.UK
NHS sickle cell and thalassaemia (SCT) screening programme:
www.gov.uk/topic/population-screening-programmes/sickle-cell-thalassaemia
Have you heard of the Local Offer?
If you are a young person with, or have a child with special educational needs and disabilities, (SEND) the Local Offer is Hertfordshire’s central source of information for SEND services and support.
Visit www.hertsdirect.org/localoffer for an easily accessible one stop shop.
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 hct.sicklenurse.herts@nhs.net or by telephone 01923 470680 opt 1, opt 3.
Patient experience
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.
