Down Syndrome Act updated to name NHS England and ICBs

From 12 December 2025, the Government has updated the Down Syndrome Act so it uses today’s NHS terms. This is a short, technical change made by regulations and it means official guidance and letters will now name integrated care boards (ICBs) instead of the old clinical commissioning groups (CCGs). The Statutory Instruments page and the Lords debate record confirm the change and timing.

Two substitutions sit at the centre of this update. Where the Act used to say “the National Health Service Commissioning Board”, it will now say “NHS England”. Where it used to say “a clinical commissioning group”, it will now say “an integrated care board”. Hansard explains this was to align the Act with the Health and Care Act 2022 reforms.

So what is an ICB? In plain English, it is the NHS body for your area that plans services and holds the budget. Parliament required NHS England to create ICBs across England, and the same law abolished CCGs. If you like the legal detail, this sits in the Health and Care Act 2022: section 14Z25 establishes ICBs and section 14Z27 abolishes CCGs.

Why does wording matter here? Under the Down Syndrome Act, the Secretary of State must issue statutory guidance and the organisations listed in the Act’s Schedule must have “due regard” to it when carrying out their functions. Updating the names in the Schedule makes sure the duty clearly applies to NHS England and to each local ICB. You can read the Schedule on legislation.gov.uk.

This change does not create new powers or duties by itself; it tidies up who is named so guidance lands in the right inboxes. At the same time, the Department of Health and Social Care is consulting on the draft guidance made under the Down Syndrome Act. The consultation opened on 5 November 2025, includes an Easy Read version, and runs until 11:59pm on 28 January 2026.

Here is what you might notice locally. Letters, websites and meeting papers will refer to your area’s ICB rather than a CCG. NHS England’s material referenced in the consultation equality impact assessment also says every ICB should identify a board member to lead on Down syndrome. That named lead is a helpful starting point if you need clarity.

If you work in a school or college as a SENCO or head of year, the duty to have “due regard” means local NHS and council teams should consider the statutory guidance and be ready to show how they are following it or why they need to do something different. Keep your local authority’s SEND “local offer” handy and, where health input is needed, ask your ICB contact how joined‑up plans will be made. (The legal duty sits with listed bodies; it helps to keep notes of who you’ve spoken to and what was agreed.)

If you’re a parent or carer, the day‑to‑day route to support stays familiar. Your GP, school and social care team remain key, but the NHS budget‑holder you may hear about is now the ICB. The regulations extend to England and Wales but, as the government note says, they apply in practice to NHS functions that are exercised in England. That’s why the ICB term appears.

A quick vocabulary check you can share in class or at home: NHS England is the national body that oversees and funds services; an integrated care board (ICB) is the local NHS decision‑maker for planning and spending; an integrated care system (ICS) is the wider partnership that includes councils and others; “due regard” means an organisation must seriously consider the statutory guidance and follow it unless there is a clear, defensible reason not to.

What’s next? Ministers told Parliament the final Down Syndrome Act guidance will be published after these regulations take effect, and they intend to do so before any wider restructuring of NHS England. Meanwhile, NHS England has set out ICB boundary and merger changes planned for April 2026 and April 2027, so names and footprints may evolve. We will keep watching so you don’t have to.