Ministers have confirmed that a short statutory instrument updates the Down Syndrome Act 2022 so its statutory guidance will apply to today’s NHS structures. The regulations amend the Act’s Schedule of “relevant authorities” by replacing references to clinical commissioning groups with integrated care boards and by substituting the National Health Service Commissioning Board with NHS England. The change is technical but necessary for enforceability once guidance is final.
The Down Syndrome Act requires the Secretary of State to issue guidance to specified public bodies on steps appropriate to meet the needs of people with Down syndrome, and those bodies must have due regard to that guidance in exercising their functions. The Schedule defines which authorities and which functions are in scope. This duty is unchanged; the instrument simply ensures the correct organisations are named.
The draft regulations were laid under the affirmative procedure on 21 October 2025 and debated in both Houses in November and December. Ministers stated the instrument is drafted to come into force the day after the day on which it is made, so the duty to have due regard will bite on the right NHS bodies as soon as the statutory guidance is published.
For the NHS, the update aligns the Act with existing NHS England requirements that each integrated care board identifies a board‑level executive lead for Down syndrome. That role supports the board to meet legal duties, embed the forthcoming guidance in commissioning decisions, and maintain clear accountability across the system.
The Department of Health and Social Care opened consultation on draft statutory guidance on 5 November 2025. The draft sets out expectations across health, social care, education and housing and highlights training frameworks already in place. Officials signpost the Oliver McGowan code of practice, which became final in September 2025, as the baseline for learning disability and autism training relevant to many professionals who will interact with people with Down syndrome.
The Act itself is already commenced. Commencement Regulations brought the Down Syndrome Act into force on 18 March 2024, creating the legal platform for guidance and the associated duty of due regard that this amendment now maps to current NHS bodies.
What changes on the ground is therefore administrative clarity rather than new entitlements. Integrated care boards and NHS England will be expressly listed among the authorities that must consider the statutory guidance once final, allowing commissioners to reference a clear legal duty in service planning, scrutiny, and assurance processes. Providers and local partners should expect ICBs to evidence how guidance has informed commissioning, pathways and reasonable adjustments.
Local authorities and education and housing partners remain within scope through the Act’s existing Schedule; for them, the operational task is to prepare for the final guidance by reviewing policies, staff training, and joint working with ICB executive leads. Families and representative groups can continue to shape the final product by responding to the DHSC consultation while it remains open.
Parliamentary debates emphasised that the instrument does not create new functions beyond the duty to have due regard to guidance, and that ministers will keep the guidance under review after publication to reflect wider structural reforms. The intent is to secure consistent implementation rather than expand the Act’s scope.