VISable not invisible

Posted on: 10 May 2024 by Dr Lauren Hepworth in May 2024 posts

Dr Lauren Hepworth is a Postdoctoral Orthoptic Research Fellow in the VISION research group. Here she tells us about VISable, a patient and public group for post-stroke visual impairment and the important role VISable plays in their research.

Started in 2011, VISable is a patient and public group with lived experience of post-stroke visual impairment. The group is facilitated by and support the VISION research group; however, all meetings are chaired by one of the VISable members. It is a national group with members coming from across the UK. The group currently has a membership of 15 with a variety of different visual impairments because of stroke.

The group meet three times per year in a combination of virtual and face-to-face meetings. These meetings include reporting on ongoing projects, discussion and development of new research ideas and identification of required resources. Any feedback from the group regarding ongoing projects is reported to the respective study management group.

Co-production of resources

VISable have been involved in advising on guidelines, practice/service delivery and other relevant documentation in relation to visual impairment following stroke. This documentation has involved the co-production of a range of resources for stroke survivors with visual impairment and for healthcare professionals. Some examples of these resources are activity books for visual rehabilitation, device accessibility for visual impairment, hints and tips from those with lived experience and factsheets on various topics, such as driving and sight impairment registration. All patient resources have been made available in audio and easy read format, the latter thanks to the support of members that also have aphasia.

The group are next due to meet for their annual face-to-face get together in June. I always look forward to these meetings as they are typically lively and productive.

New research partnership

In tandem with the VISable group, our most recent NIHR HSDR funded project has led to the set-up of a new research partnership group involving individuals with lived experience of visual impairment because of acquired brain injury (ABI) or cerebral visual impairment (CVI). This group also pulls in individuals with professional experience of these conditions including health care professionals, visual rehabilitation officers, and qualified teachers for the visually impaired.

This group will support our two-year project, which aims to produce two large evidence synthesis of the organisation of eye care services for adults and children with visual impairment due to ABI or CVI. This research partnership group had their first meeting in April where we got to know each other along with the important task of deciding an acronym for the project. The search terms being used by the project will be discussed at the next project partnership group in June.

Whilst the project partnership group is more directly involved with the steer of the evidence synthesis projects as they develop, a member of VISable is the chair, thus creating a link between the two groups.

The input that our patient and public partners provide to the VISION group is an invaluable gift, which elevates our research and its impact, for which we are very grateful.