NHS Golden Jubilee seeks feedback from families of people with Down’s syndrome to improve hospital experiences

We are pleased to share an opportunity for families to contribute directly to an important project currently underway at NHS Golden Jubilee.

Our team was recently contacted by Gemma, an Advanced Clinical Nurse Specialist with the Scottish Adult Congenital Cardiac Service (SACCS), who is leading work to improve the hospital experience for patients with learning disabilities and additional support needs, including young people and adults with Down’s syndrome.

What the project has achieved so far

The SACCS team has already taken several positive steps, including:

• Sensory gift packs to support comfort, regulation and reduced anxiety
• A new, colourful “What Matters To Me” poster, enabling patients and families to share key personal details and communication needs
• Fold-down parent/carer beds to support families staying overnight
• A design brief for the redesign of two inpatient rooms into more person-centred, sensory-aware spaces inspired by leading children’s and young people’s environments

Feedback on the early work has been extremely positive.

How you can help

As the project moves into its next stage, Gemma and the team are seeking feedback from families of people with Down’s syndrome, whose lived experience is vital to shaping hospital environments and care pathways that meet real needs.

We are inviting parents and carers to review the proposed ideas and share their insights, suggestions, and experiences. Your feedback will directly influence how NHS Golden Jubilee develops supportive, accessible spaces for people with learning disabilities.

Get involved

If you would like to contribute your thoughts, please email them to :
Gemma.Brown@gjnh.scot.nhs.uk

Your perspective can help ensure that future hospital experiences are more inclusive and person-centred for people with Down’s syndrome and their families.