The local NHS has launched an updated and enhanced care pathway for people living with Down Syndrome in Hull and the East Riding of Yorkshire.
Produced in partnership with local charity Downright Special and health and social care services, the pathway brings together all relevant health information in one place. It aims to empower people to navigate existing services and ensure people living with Down Syndrome receive the best possible care to meet their needs.
Feedback from parents and carers highlighted a lack of awareness regarding available services and when to access them, resulting in some individuals missing out on crucial support. A unique partnership was then formed between Downright Special, families and healthcare professionals to produce the first Down Syndrome Pathway for Hull in 2018.
This newly relaunched care pathway continues to act as a guide to the health and care services that are available in the area. The pathway also helps everyone, including health professionals, to understand the health needs of children and adults with Down Syndrome.
By launching the updated pathway on World Down Syndrome Day, those who worked to create the pathway want to raise awareness and ensure that no one living with Down Syndrome is overlooked in accessing the support they require.
Gillian Bowlas, Charity Manager at Downright Special, said: “Downright Special continues to lead on ensuring that the Down Syndrome care pathway is reviewed and updated on annual basis, and we are so pleased to have the ongoing support of local healthcare professionals and the ICB to make that happen in such a collaborative way.
“The care pathway is an invaluable tool for health professionals, parents, carers and people with Down syndrome. It helps everyone understand the health needs of children and adults with Down syndrome, is clear about the health services that are available locally and how they are accessed – all important factors in helping to improve health outcomes for people with Down Syndrome in our area.
“We are so grateful to the parents who first got the care pathway off the ground, and to everyone who has since been involved in keeping the pathway up to date and relevant. We are also grateful to our funders who ensure that we can continue to do this vital piece of work.
“On World Down Syndrome Day, 21 March 2024, the Down Syndrome International network will be launching a new project calling for Health Equity for People with Disabilities. It’s great that this topic is already high on the local agenda with the latest version of our Down Syndrome care pathway being launched on World Down Syndrome Day too.”
David Pullen Higham, Assistant Director of Community Integration & Transformation (Children & Young People) at NHS Humber and North Yorkshire Integrated Care Board (ICB), said: “Over the last seven years, we have continued to work with Downright Special, families and carers in a very rewarding partnership focused on developing our Down Syndrome care pathway.
“The pathway promotes a consistent approach to referrals and support, while maintaining personalised services for patients and their families. It’s well-regarded nationally, and the experience-based approach has been replicated in other areas of the UK.
“World Down Syndrome Day gives us an opportunity to thank all the people who continue to be involved in this shared commitment to improve healthcare experiences for people with Down Syndrome and their families.”
Further information about the care pathway is available on the Humber and North Yorkshire Health and Care Partnership website.
Down Syndrome is the most common autosomal anomaly – present in 1 in 1,000 live births. In Hull and East Yorkshire, there are approximately five live births per year of babies who are diagnosed with Down Syndrome.
World Down Syndrome Day is a global awareness day which takes place on 21 March each year. This date was selected to signify the uniqueness of the triplication of the 21st chromosome which causes the condition.
People are encouraged to take part in the day by wearing mismatched socks or colourful socks. The idea is to start a conversation, inviting questions about them and opening a dialogue about Down Syndrome.