Kent and Medway partners unite to improve care for people with Down syndrome

Health and care partners across Kent and Medway are joining forces to help shape new national guidance to improve how people with Down syndrome and learning disabilities access support and services.

Kent and Medway Mental Health NHS Trust is coordinating a joint response shaped by patients, and workforce, to the UK Government’s consultation on the Down Syndrome Act 2022 Draft Statutory Guidance, which closes on 30 March 2026. 

The work will ensure the final guidance reflects the experiences that local people and families share with the staff who support them every day, calling for earlier intervention, clearer communication, and more joined-up care across services.

George Matuska, Learning Disability and Autism Lead at Kent and Medway Mental Health NHS Trust, said:

“People with Down syndrome and their families tell our health and care teams what matters most to them and as a service we are committed to listening, acting, and working together. By bringing together insights from our frontline workforce across Kent and Medway, we can make sure that what people tell us translates into real improvements in care.”

The trust is coordinating a shared response on behalf of NHS partners across Kent and Medway, drawing on the collective learning and feedback gathered by staff across mental health, physical health, primary care, and community services. 

This approach will showcase both what is already working well locally and what still needs to improve to reduce health inequalities and make care easier to navigate.

Although the Act focuses on people with Down syndrome, the draft guidance recognises that it may also benefit others with genetic or chromosomal conditions, and people with learning disabilities and autism who experience similar challenges. Kent and Medway partners will use this opportunity to promote more consistent and inclusive approaches across all health and care services.

We know that people with Down syndrome and learning disabilities can face delays in getting the right care, and often experience poorer health outcomes. Families tell staff that services can feel fragmented, with unclear pathways and difficulties when moving between children’s and adult services. Addressing these issues, through earlier identification of needs, reasonable adjustments, and closer coordination between teams, will be key themes shared in the joint response.

Hana Holden, Head of Service for Adult Learning Disability and Adult Autism Keyworker Services at Kent Community Health NHS Foundation Trust, said:

“People with Down syndrome can experience a complex mix of physical and mental health needs. The strengths and needs of people with Down syndrome are individual and person-centred support should reflect this. Barriers like communication challenges, diagnostic overshadowing and delayed care can make things worse. Our teams learn a great deal from what patients and carers share with them. Listening and acting on feedback helps us design care that is proactive, accessible and focused on preventing problems before they escalate.”

Partners are encouraged to submit their own individual responses to the national consultation. By combining insights from both families and the workforce who support them, Kent and Medway Mental Health NHS Trust hopes to influence national guidance that delivers more inclusive, joined-up, and personalised care for people with Down syndrome and related conditions across all services.