A crucial consultation is happening right now that could change healthcare for people with Down’s syndrome across Scotland – and we need your voice to be heard.
Healthcare Improvement Scotland is reviewing the national standards that guide how all health boards deliver care. These standards matter because they shape the treatment and support that people with Down’s syndrome and their families receive every day.
We know from speaking with our families that accessing good healthcare can be a real challenge. Too often, people with Down’s syndrome face what’s called “diagnostic overshadowing” – where doctors assume symptoms are just part of having Down’s syndrome rather than looking for the real cause. This can lead to serious delays in getting proper treatment.
The statistics are stark. People with Down’s syndrome are still dying on average 28 years earlier than the general population, and shockingly, ‘Down’s syndrome’ is still being wrongly listed as a cause of death on medical records. Down’s syndrome is a genetic condition – it’s not an illness and it can’t kill you.
We’ve been working with Healthcare Improvement Scotland as part of their Clinical Governance Standards Development Group, and we’ve made specific recommendations to ensure these new standards truly include everyone:
Making Inclusion Clear from the StartWe want the standards to clearly state that they apply to all people using health services, including those with learning disabilities who often face persistent health inequalities. No one should be an afterthought.
Tackling Diagnostic Overshadowing Head-OnWe’re pushing for explicit recognition of diagnostic overshadowing in the clinical effectiveness standards. Healthcare professionals need to understand that symptoms in people with Down’s syndrome should be investigated just as thoroughly as they would be for anyone else.
Better Training for All StaffWe’ve recommended that all healthcare staff receive proper training in disability awareness, how to communicate effectively with people with learning disabilities, and how to support people in making their own decisions about their care.
This consultation is open to everyone – and your experiences matter. Whether you’re a person with Down’s syndrome, a family member, a carer, or someone who supports our community, your voice can help shape these crucial standards.
You don’t need to be a medical expert to take part. Your real-life experiences of healthcare – both positive and challenging – are exactly what decision-makers need to hear.
These standards will guide how health boards across Scotland deliver care for years to come. Getting this right could make a real difference to thousands of people with Down’s syndrome and their families.
This is part of our bigger ‘Movement for Change’ – our commitment to tackling the inequalities that people with Down’s syndrome face every day. But we can’t do it alone. We need as many voices as possible to show just how important these changes are.
The consultation is open now – don’t let this opportunity pass by.
Together, we can ensure that healthcare truly works for everyone, where people are seen as individuals first, not their disability.