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Down Syndrome Pathway

Any person who has Down Syndrome is a person first. As with any other child or adult, they will have their own unique personality and attributes. It is important to remember that despite someone having Down Syndrome, this alone does not define them. Down Syndrome is the commonest autosomal anomaly, present in 1 in 600-700 live births. In the majority of cases (95%) there is an extra chromosome, 47 chromosomes rather than 46. The extra chromosome being number 21. In 2.5% there is mosaicism where only some of the cells have the extra Chromosome.

The patient experience and feedback from families in Stockton and Hartlepool has identified the need for a clinical care pathway for children with Down Syndrome. Input has been sought from parent/carers and the services closely involved with the care of these children, which can be viewed here. It is effectively putting all the health information that may be pertinent for people with Down Syndrome in one place. Multidisciplinary representatives from Community Services, North Tees and Hartlepool Hospitals, Education, James Cook University Hospital, Harrogate and District Foundation Trust, Positive About Down Syndrome and Down’s Syndrome North East Charities, all working with Parent/Carers with lived experience. The Down Syndrome Pathway Improvement Steering Group was created to produce a clinical pathway emphasising the need for information and engagement with families. The pathway does not replace those services that all children and adults have access to e.g. GP services, midwifery, health visiting, school nursing (now the 0-19 service in Stockton on Tees), therapy services, community health services and hospital services. It seeks to clarify additional services that may need to be involved in the care of a person with Down Syndrome because of some common health difficulties experienced. These guidelines are largely based on work done by Down Syndrome Medical Interest Group (DSMIG, UK and Ireland) who have produced guidelines for basic medical surveillance in children with a diagnosis of Down Syndrome. These guidelines and a wide range of other health information can be found at the Down Syndrome Medical Interest Group.

We would like to acknowledge the work done by Hull CCG, Nottingham Down Syndrome Children’s Services and Oxford Health NHS Foundation Trust and County Council as we have also utilised their guidelines for this pathway. The pathway and guideline has been co-produced with parents/carers/ service users and professionals to ensure the information is accurate, and is driven by those who will benefit the most from using it. Consent from parents and carers should be obtained prior to referral and notification of needs within the pathway as per local policy. Clarification regarding consent arrangements for each service should be sought.

If you notice any errors or changes that may be required (clinical or otherwise) please email nencicbtv.enquiries@nhs.net FAO Children and Young People Portfolio with the detail.

Find out what support is available for children with Down Syndrome in Stockton and Hartlepool.

View further information on the Down Syndrome support pathway.

The information on this page is available in different languages and formats on request by emailing necsu.comms@nhs.net.

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Covering introduction letter from parents with input/comments from the Trust Click here
Meet your professional leaflet Click here
Reminder to file down syndrome red book insert Click here
Copy of the hospital passport Click here
Positive about down syndrome information card (national signposting) Available from support@dsne.org.uk
Down's syndrome North East leaflet (local area signposting) Click here
Email address: support@dsne.org.uk
Together 21 leaflet (local area signposting) Available from support@dsne.org.uk
Down syndrome association congratulations new baby leaflet Available from support@dsne.org.uk
Parent/carer forum details for Stockton and Hartlepool Click here for Stockton
Click here for Hartlepool
Details of Facebook group and neonatal playground Click here for Neonatal Playgroup
Facebook Group details available from info@neoangels.org.uk
Leaflet with email address of down's syndrome North East parent champion service Click here


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