Question to the Department of Health and Social Care:

To ask His Majesty's Government whether they intend to have any discussions with the National Institute for Health and Care Excellence (NICE) about continuing to work with the rare condition community to improve engagement and involvement in decision-making from small organisations.

Department officials regularly meet with colleagues in the National Institute for Health and Care Excellence (NICE) to discuss a range of issues. Taking into account the advice and experience of people using services, as well as their carers or advocates, alongside that of health and social care professionals, commissioners, providers, and the public, is a central principle that guides the NICE’s work.

The NICE is committed to working with people who use health and social care services, their families, carers, and the public, as well as with voluntary and community sector organisations, and all of the NICE’s guidance is developed using a process that takes into account the opinions and views of the people who will be affected by them, to ensure their needs and priorities are reflected. The NICE gathers these perspectives through the membership of its committees, and through public consultations at various stages of guidance development. Stakeholders also have an opportunity to comment on the potential impact of the NICE’s guidance on health inequalities.