Learning Disability Report

Healthwatch Lancashire and Healthwatch Blackpool undertook a major engagement project with people with learning disabilities and autism, their families, carers, support workers and professionals between June and September 2017. The project involved 330 participants across 21 care circles, learning disability events, pop-up engagement sessions, focus groups and online surveys. The primary focus was people's experiences of hospital services and the use of Hospital Passports.

The findings showed that hospital experiences were often challenging. Overall, 47% of reported hospital experiences were negative, compared with 39% positive and 14% neutral or mixed. People with learning disabilities and autism themselves were the group most likely to report negative experiences, with 51% describing their hospital experiences negatively. Common concerns included poor communication, long waiting times, staff not understanding learning disabilities or autism, inaccessible information, and environments that increased anxiety or sensory distress. 

Despite these concerns, many respondents praised individual members of staff. Among people with learning disabilities and autism, 69% rated hospital staff as "excellent" or "good". Positive experiences often centred on staff who spoke directly to patients, provided clear explanations, showed kindness and compassion, respected individual needs and took time to offer reassurance. The quality of relationships and communication with staff was the strongest contributor to a positive hospital experience.

A major theme throughout the report was the limited use of Hospital Passports. While 42% of respondents said they had a Hospital Passport, 58% either did not have one or were unsure. Even where passports existed, 63% reported that they were either not used or people were unsure whether staff had used them. Many participants felt Hospital Passports could improve care by helping staff quickly understand communication needs, support requirements and personal preferences, but repeatedly reported that staff did not consistently read or act on them. 

Communication and awareness emerged as the single most important area for improvement. Respondents wanted clearer appointment letters, better explanations about treatment, more accessible information, increased use of easy-read formats, greater awareness of autism and learning disabilities among staff, and wider use of communication tools such as Makaton. Many participants also wanted quieter waiting environments, shorter waiting times, opportunities to visit wards before treatment, and better support for anxiety. 

The report also highlighted examples of good practice across Lancashire hospital trusts. These included learning disability liaison nurses, hospital flagging systems, pre-attendance planning, reasonable adjustments, communication aids, learning disability champions, dedicated training programmes, and efforts to promote Hospital Passports. Examples from Blackpool Teaching Hospitals, Lancashire Teaching Hospitals, Southport and Ormskirk Hospital, East Lancashire Hospitals and University Hospitals of Morecambe Bay were presented as models that could be shared more widely.

Healthwatch concluded that people with learning disabilities and autism continue to face significant barriers when accessing healthcare. The report recommended improving communication at every stage of the patient journey, increasing staff training and awareness, expanding access to easy-read information, making hospital environments more supportive, strengthening the role of learning disability liaison services and ensuring Hospital Passports are promoted and consistently used.