Children’s sickle cell specialist service

  • Notice regarding the service during COVID-19

    You can find the most up to date guidance for shielding and protecting vulnerable persons from COVID-19 here.

    The team consists of a specialist nurse, a psychologist and an administrator.

    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 new born blood spot results and diagnosis to families who have a baby with a Sickle Cell Disorder
    • 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 in order to prevent admission to hospital wherever possible
    • To work with young persons to develop an individual plan of care to optimise successful transition to adult services
    • Act as an information and educational resource to other healthcare professionals within the community, acute hospital services and the voluntary sector

    Contact the service

    Tel: 01923 470680

    Email: hct.sicklenurse.hertfordshire@nhs.net

    Children's community nursing service offer

How the service is provided

The service is provided through the following locations:

  • home visits
  • school
  • nursery
  • community venues
  • hospital clinics

Who is eligible for the service

Children and young people under the age of 19 years diagnosed with sickle cell and thalassaemia disorders who are registered with a GP in Hertfordshire.

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

Leaflets

Sickle cell and stem cell transplant
A parent's guide to managing sickle cell disease

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.
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

The specialist nursing service accepts referrals and works closely with other services such as: acute consultant and hospital staff, GPs, community doctors, health visitors and school nurses, social nursery workers, education, children’s professionals, voluntary sector, parent and/or carer and the blood spot screening programme.

Referrals will be accepted by:

  • SystmOne
  • an electronic referral
  • Telephone: 01923 470680
  • Post:
    Children’s Sickle Cell Service
    Peace Children's Centre
    Peace Prospect
    Watford
    WD17 3EW

Details required:

  • personal details - child or adolescent name, date of birth, religion and ethnicity, NHS number, address with postcode and telephone number
  • name of Consultant or GP and surgery name and address with postcode
  • name of person making the referral
  • diagnosis plus brief medical history
  • details of current medication
  • all details pertinent to a safe home visit

Referral Form

Patient experience

If you would like to share your story, please contact the Patient Experience team on 01707 388036 or email pals.hchs@nhs.net.

We would also love to hear about your experience on our service, please complete a survey by clicking here.