Question to the Department of Health and Social Care:

To ask His Majesty's Government what provisions are in place to support the families and caregivers of individuals with rare diseases.

Each year since 2021, we have published an England Rare Diseases Action Plan. On 29 February 2024, we published the third England Rare Diseases Action Plan. In this plan we recognised that significant challenges exist with access to mental health and psychological support for people living with rare conditions, as well as their families and carers. During this year we have taken steps to further understand the challenges faced through a workshop, and have begun to address these needs by developing resources to better equip the workforce to provide support.

The enormous contribution of unpaid carers, including those caring for individuals with rare diseases, is reflected throughout the Next Steps to Put People at the Heart of Care, published in April 2023. Furthermore, the Better Care Fund in 2023/24 includes £327 million for carers support, including short breaks and respite services for carers. This also funds advice and support to carers, and a small number of additional local authority duties. The Accelerating Reform Fund also provides support for unpaid carers. The Government is developing a new survey of unpaid carers which will capture the wide range of experiences, circumstances, and needs of unpaid carers across England. Through the National Institute for Health and Care Research, an evaluation of the support provided to unpaid carers funded through the Better Care Fund has been commissioned, which will improve the understanding of what support works best for unpaid carers.