Influencing awareness of disability: using information from patients with learning disabilities.

We know that people with learning disabilities are more prone to a number of medical conditions including epilepsy, dental problems, hypertension and respiratory problems (FPLD 2006). Conversely we also recognise that people with learning disabilities have significantly poorer health outcomes (WHO 2001). Valuing People (DOH 2001) set out to improve the lives of people with learning disabilities by, among other things, reducing health inequalities and improving access to healthcare. The strategy introduced Health Action Plans (HAPs); documents prepared by / with a person with learning disabilities covering information about their health and health choices. It intended that HAPs would have been integrated into health service culture by now but the task of completing one with every person with learning disabilities is proving to be quite challenging. This project involved the development and implementation of patient held hospital passports in an acute hospital. The project team included staff working in an acute hospital and community learning disability teams; extensive involvement from service users, carers and organisations supporting people with learning disabilities underpinned the project. A passport, like an HAP is completed by / with a person with disabilities; it contains information considered necessary for a hospital appointment / admission. Ultimately it is intended that the passports will form part of the patient‘s HAP once that has been completed (possibly as an appendix) but it is also designed as a stand alone document.
Evidence appears sparse regarding the assessment or evaluation of awareness levels of staff in acute healthcare settings regarding the needs of people with learning disabilities. This project looked at whether the use of hospital passports would support this. Staff awareness was measured using the nominal group technique to establish consensus regarding the challenges that healthcare staff face when working with patients with learning disabilities. In a six month period, twenty patients with planned (elective) admissions used passports during their stay in hospital. The implementation of the passports was supported by training sessions to inform staff how to use them. Nominal groups were then conducted with staff who had worked with patients using passports. Consensus of opinion showed that the passports had made a difference to staff when working with patients with learning disabilities. An increase in staff awareness of learning disabilities was also identified. The patients’ perspectives were also considered; evaluation forms were completed after discharge with sixteen patients who had used passports during their admission. Patients reported that they felt their passports had supported communication during their admission and improved their overall care experience. The effectiveness and limitations of the project design are addressed and the ethical implications of working with patients with learning disabilities are discussed. Recommendations for disseminating the use of passports throughout the hospital and with other local healthcare organisations are also outlined.

A project submitted to Middlesex University in partial fulfilment of the requirements for the degree of Doctorate of Professional Studies in Health.