1. Understanding the experiences of people with learning disabilities, carers and hospital staff in a Bristol hospital Sharing the outcomes of a small research study Lesley Russ October 2006

2. 2 Aims of presentation To briefly review general research methods. To inform regarding the process of a small research study. To present the general findings of the study, including actual experiences. To discuss the final recommendations

3. 3 What is Research Research is “finding out about things and finding out why things happen” (March et al 1997) Two main ways to do it Quantitative-scientific-collects numbers that can be measured with statistics. Qualitative- interpretive- collects things people say and seeks to make sense of what and why.

4. 4 Setting the Context Talk uses terms learning difficulties /learning disabilities for same population. Study carried out between 2004/05 for MSc in Public Health. People with learning difficulties experience extreme health inequalities. Considerable evidence of increased health problems and poor access to health care.

5. 5 Context continued Lack of research into hospital experiences. Timely as helps evaluate BRI Project Nurse role Responds to current documents eg Valuing People, NPSA Inclusion and public involvement, high on government agenda. eg Our health, our care our say. Public involvement fits well with qualitative research methods.

6. 6 Research Timetable September 04 Project proposal accepted by UWE. October 04 -February 05. Ethical approval process. February 05 Project advertised. Research advisory group met. Research questions developed March-May05 Focus groups held. Data collected by audio tape. May-September 05 Data transcribed and analysed. Dissertation written and handed in.

7. 7 Focus Group Information 4 focus groups held. 13 people in total. 4 men, 9 women All groups met at UBHT training dept. Between 5-6 hours tape recording. Over 100 pages type written data. Charitable Trustees paid expenses.

8. 8 Main General Findings Minimal experience, understanding or involvement in research by people with learning difficulties. Difficulty in recruiting to all groups. Participative research methods difficult and time consuming to implement. Academic framework makes real partnerships in research difficult to achieve.

9. 9 Findings relating to hospital care There were a mix of positive and negative experiences reported. Hospital care requires a special/ different approach to the general population. Family and paid carers play a significant role in the provision of hospital care. (eg 1) Hospital staff respect but have unclear expectations of the role of carers (eg 2) Little material or emotional support is available for carers.

10. 10 Findings continued Need for hospital staff to ensure a co- ordinated approach between themselves and carers (eg 3) Staff, across the hospital, felt they lacked specialist skills. (eg 4) Staff that had had experience felt more confident. Liaison often poor between hospital staff and CLDTs (eg 5) The learning difficulty project nurse post was found to be highly valued, acting as a catalyst for change. (eg 6)

11. 11 Recommendations Public consultation.All research studies and organisational changes to involve key stakeholders. Hospitals to take responsibility for health care for all. The role and support for all carers is to be urgently reviewed and actively co-ordinated. Staff training for all. Communication skills to be prioritised The development of a permanent learning difficulty project nurse.

12. 12 Recommendations continued Evaluation/ Research into learning difficulty care required. Admission/discharge procedures to be actively reviewed Hospital information/ resources (food order cards) to be made accessible to all. Closer working relationship between hospital staff and CLDTs.