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Down’s Syndrome Care Pathway

NHS Hull Clinical Commissioning Group, in partnership with health and social care services in Hull, has been developing a pathway for people living with Down’s Syndrome and their families or carers.

We know that people with Down’s Syndrome can have poorer health outcomes, and sometimes struggle to access mainstream services. Even though everyone who has Down’s Syndrome is different, there are some clinical features and some health conditions they may be more prone to.

Parents and carers of people who live with Down’s Syndrome have fed back to us that that they have not been aware of what services to access and when. As a result some children have slipped through the net for services and support. The care they have received has differed greatly, and they wish to have a consistent approach to referrals and support while maintaining personalisation.

What is a Care Pathway?

The new Care Pathway aims to bring together all of the health information needed for people with Down’s Syndrome.

A care pathway aims to have:

  • The right people
  • In the right order
  • In the right place
  • Doing the right thing
  • In the right time
  • With the right outcomes
  • All with attention to the patient experience

All the way through the creation of this Care Pathway, input has been sought from parents, carers and other services closely involved with the care of these children. This pathway will help people to navigate their way through health services to ensure no one who has Down’s Syndrome gets ‘left behind’.

Download the Down’s Syndrome Care Pathway
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