Families, carers, NHS Hull Clinical Commissioning Group (CCG), the Downright Special Network, local health professionals and people with Down’s Syndrome will come together on World Down Syndrome Awareness Day 2018 (21 March) to launch the unique Down’s Syndrome Pathway for Hull.
Care pathways are a way of setting out a process of best practice to be followed in the treatment of a patient with a particular condition or with particular needs. Feedback from local parents identified the need for a clear and family-friendly clinical care pathway and guidelines for children, young people and adults with Down’s Syndrome. Over the last two years, the new pathway has been co-produced with families, voluntary organisations, the CCG and hospital and community nursing teams closely involved with Down Syndrome care.
The launch will fall within UK Down’s Syndrome Awareness Week 2018, which celebrates all the different ways people with Down’s Syndrome make a difference to their communities.
The formal part of the launch is from 10.30 am – 12.00 noon. Short presentations from NHS Hull CCG Director of Integrated Commissioning Erica Daley, local clinicians and parents who will outline the care pathway, its unique development and difference it will make to people.
A less formal event takes place later in the day between 4.00 pm and 6.00 pm to mark World Down’s Syndrome Day to celebrate the joint work that has happened locally to raise the profile of Down’s Syndrome - featuring a free craft session for children. Both events will be supported by information stands from organisations working with people and families living with Down’s Syndrome.
Erica Daley, Hull CCG Director of Integrated Commissioning, said:
“This has been a real collaboration between many different services, families and carers, all with the single aim of improving lives for children and adults with Down’s Syndrome.
“We hope that parents will feel more empowered when they speak to GPs, health visitors and other professionals as the pathway helps them chart the key stages where their child will need reviews, for example audiology or speech and language. For adults with Down’s Syndrome the pathway will support the health checks that they should regularly receive to live well and keep healthy.”
Vicky Abbott, mother of 6 year old Joshua, has played a key part in the development of the new care pathway:
“We have the same high expectations about our children as any other parents, but we hadn’t always felt that this was recognised by everyone across health and social care.
“From the early meetings with the CCG we were able to demonstrate how important the Down Syndrome pathway would be to families in Hull and their support gave the whole project momentum.
“I’m so delighted by how far we have come and I really want to thank everyone from the Down’s Syndrome community who has helped development of the pathway by sharing their experiences of local health and care.”
Gillian Bowlas, Charity Manager of Downright Special and mum to 13 year old Rachel who has Down’s Syndrome, said:
“We are so proud to be part of this achievement. It is such a good example of all the local health, social care and voluntary organisations working together to make what we hope will be a massive difference to people living with Down’s Syndrome. The pathway makes it clear to families and healthcare professional which services are out there and when people with Down syndrome should be accessing them.’
