Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what discussions he has had with NICE on feedback from stakeholders on how the impacts on carers are considered in appraisals for rare and ultra-rare conditions.

In making its recommendations on new medicines, the National Institute for Health and Care Excellence (NICE) takes into account all health-related costs and benefits, including health benefits to carers. It does not, however, take into account wider societal or economic considerations. Taking a wider perspective could have unintended consequences such as reducing access to treatments for patients who are disproportionately older, economically inactive, or have greater care needs. NICE’s methods are set out in its published health technology evaluations manual, which is available at the following link:

https://www.nice.org.uk/process/pmg36

When presenting health effects for carers, evidence should show when the condition is associated with a substantial effect on a carer’s health-related quality of life, and how the technology affects carers. This applies for all therapies, including therapies for rare diseases. NICE appraisals specifically consider health-related quality of life, for both patients and carers, rather than quality of life as a whole.