Caring for someone with EB can be difficult. The Debra insight study showed that the caring role significantly impacts the ability to enjoy life and mental health in well over half of respondents.
We also know that for over half of carers, it is difficult to engage in hobbies, exercise, study or work such that it can feel as if your own life has been put on hold.
The team can refer you for a carers assessment or signpost you to carers support organisations.
The EB psychology service also offers one-to-one psychological therapy for family and carers for whom the role is having a significant impact.
Self-referrals can be made, or speak to one of the team.
Carers assessment
A carers assessment explores the impact the caring role is having upon you and whether the local authority are able to facilitate support such as time for yourself, or financial support (such as to cover taxi fares). There is more information about carers assessments online.
Need the links to support groups, they aren't working
Last reviewed: 29 September 2025