Karin Smyth

We want to ensure that the guidance is published as soon as possible, and we appreciate patience while we make that happen. It is important that we continue to work with people and organisations with lived experience to develop the guidance. We hope that the update we provide will assure everyone of the priority attached to that important piece of work. As for the scope of the guidance—with regard to other genetic conditions or learning disability—a commitment was made during the Bill’s passage through Parliament to consider the links and overlaps with other genetic conditions and/or a learning disability. Therefore, the guidance will be Down syndrome-specific, in line with the Government’s statutory duty—which we are clear about—under the Act. It will also include references to where it could have wider benefit. We want to take the opportunity of the guidance to help as many people as possible and to provide examples of good practice to support relevant authorities to implement improvements in practice. On employment, we heard through engagement with our partners that employment is crucial to improving life outcomes. People with Down syndrome can bring many skills and strengths to the workplace. We want every person with Down syndrome who can and wants to work to have the right support and opportunity to do so. That is why a dedicated chapter on employment will be included in the guidance. On implementing the guidance, we know that ultimately much depends on how the guidance is put into practice across our communities. To support implementation, NHS England published statutory guidance on 9 May 2023 to require that every ICB had a named lead for Down syndrome. I think that the right hon. Member for Beverley and Holderness said that there was only one, and I recognise the name, because it is my own area—well done, them. That might not have happened, but it was said in 2023. The executive lead on Down syndrome will lead on supporting the chief executive and the board to ensure that the ICB performs its functions effectively in the interests of people with Down syndrome. We recognise the importance of ensuring that people with Down syndrome are able to make complaints, if they have concerns about the quality of and access to care. We expect the named lead to ensure that concerns are acted on at the local level.