Dorothy House Hospice Care user advisory group: a year of supporting patient and carer involvement

Dorothy House Hospice Care asked Healthwatch Wiltshire to establish and maintain a user advisory group to support user involvement in service development and quality monitoring of Dorothy House Hospice Care services. Dorothy House Hospice Care is committed to involving and consulting people who use their services to ensure that this process is integral to the services they provide. Healthwatch Wiltshire exists to promote user involvement in service development and quality monitoring and can provide independent scrutiny. The User Advisory Group was established in September 2016 and is a forum where engagement and discussion of people’s views, comments and ideas can take place on the care and support provided by Dorothy House Hospice Care. The aim of the User Advisory Group is to provide an opportunity for those people who have used Dorothy House Hospice Care services (this includes patients and/or their family members and unpaid carers, general health and care service users, those interested in end of life care and those interested in promoting the voice of users more generally) to express their open and honest opinions. The outcome of its discussions will be used to influence service development, enhance the quality of services and promote community engagement.

Through discussions at the User Advisory Group meetings and through talking directly to patients, families and unpaid carers Healthwatch Wiltshire heard: Dorothy House’s services are highly valued by patients, their families and carers, but more awareness and understanding of the range of services that Dorothy House provides is needed; that at the point of referral, patients want to talk to skilled staff with the time to support them in a personal way; about the importance of listening to patients and their families and carers so that care is led by them; that there needs to be equal access to services across geographical boundaries, and that these services are available at times to suit different individuals; about the importance of joined-up working with other organisations and a better use of technology.

The User Advisory Group questioned whether the extensive range of high quality services provided by Dorothy House was sustainable in the long term if patient numbers increase.