Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether his Department plans to review the manner in which NICE considers carer-related quality of life in its assessments of treatments for (a) rare, (b) progressive and (c) paediatric diseases.

The National Institute for Health and Care Excellence’s (NICE) technology appraisal process allows its independent committees to take societal benefits, such as health-related quality-of-life for carers and impacts on personal social services, into account. 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

Evaluations should consider all health effects for patients, and, when relevant, carers. 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.