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Terminal Illnesses: Medical Treatments

Asked by Freddie van MierloLiberal DemocratDepartment of Health and Social CareTabled Answered 9 October 2025UIN 76508

The question

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that the impact on carers is included in NICE technology appraisals for rare and progressive diseases.

Answered by Dr Zubir Ahmed

NICE’s technology appraisal process allows its independent committees to take societal benefits, such as health-related quality-of-life for carers and impact 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 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.

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