The experiences of people with dual sensory impairment attending rare syndrome clinics


2014 - 2015

Dr Liz Ellis
Tel: 0121 414 4392

This research by Dr Liz Ellis and Dr Liz Hodges focused on the experiences of people who have a dual sensory impairment (deafblind people) and attend specialist clinics for people with rare syndromes. It was funded by Sense the national charity for deafblind people and their families, and Lucy Keenan from Sense was also involved in collecting data. 

The needs of people with a dual sensory impairment (deafblind people) are unique in terms of communication, getting around, and accessing information.  These are all crucial in relation to health care, and therefore this research looked at the experiences of deafblind people, as told to us in their own words, talking about attending specialist rare syndrome clinics. It focused on people with sensory impairments, especially dual sensory impairments who had one of the following syndromes; Alström,  Usher,  Bardet-Biedl,  Wolfram, Stickler,   or CHARGE.  People with some other rare syndromes which cause deafblindness also took part. 

During the project we talked to participants, carried out environmental audits of hospital buildings and accompanied some patients on visits to hospitals.  From this we considered what was good practice in ensuring that clinic visits can be as smooth as possible for people with sensory impairments, looking at issues of mobility, communication and information, as well as the complexity and rarity of the conditions studied.  The report includes guidelines for good practice in the environment, staffing and procedures. 

Find out more about the outcomes

Adult participation report (Word 97-2003)

Teenager participation report (Word 97-2003)

Read the full report (PDF, 1.05MB) 

Read the full report (Word 97-2003, 772KB)

Read an executive summary of the report (PDF, 169KB)

Read an executive summary of the report (Word 97-2003, 232KB)