A service user led education experience to enhance learning of effective communication with people with learning disability.


When did you first introduce the innovation?

Between 12 and 24 months ago

Please describe the innovation you have developed

We have facilitated a local learning disability self advocacy organisation to design and deliver a day promoting positive values and effective communication towards people with learning disabilities. The day has been delivered primarily to nursing students so far, but operating department practitioners have recently become part of it, with the ultimate aim of including all health and social care students in the Faculty. This gradual build up is deliberate, as individuals with cognitive impairments need time to assimilate new information. Also, the eventual group size will be significantly large, potentially daunting for anyone, so we needed to show sensitivity and work towards presenting to a large group. The day includes a break out activity where students view a film also produced by folks with learning disabilities. Students use the film to critique the communication approaches used. For the nursing students this activity is also a formative element in their assessment for the communication skills unit of which the day forms a part.

What prompted you to develop this innovation?

Development of the innovation was motivated by several factors, including a long standing and proactive partnership with service users and carers throughout the Faculty, facilitated by a highly motivated and dedicated team. This combined with a series of events and reports (such as Mencap’s Death by Indifference, the Michaels Report, Panorama documentary on Winterbourne) to highlight the need to convey to health and social care students the scale of oppression experienced by people with learning disabilities.

In your view, what is it about this innovation that makes it different/important?

The stark findings of reports such as the Confidential Inquiry into the Premature Deaths of people with Learning Disability (13 year reduced life span for men, 20 years for women), demonstrate that there are no good biomedical reasons for this inequality, it is primarily about psychosocial interactions amongst health and social care professionals. The key element in this intervention is that it is based on a self advocacy model; driven by individuals who have significant cognitive impairments and life experience to match. We met with several learning disability organisations before finding Bournemouth People First, who were prepared to take the lead.

This is what makes the innovation different, in that the approach to developing and delivering the experience reflects the approach to interaction and communication that we are promoting to the students. Showing people with learning disabilities taking charge of their destinies, and working as senior partners in collaboration with non-disabled professionals, models the style of communication presented and taught to the students throughout the rest of the unit. For example, all the slides and other materials are in Easy Read format, not something that even occurred to the experienced non-disabled professionals. Bournemouth People First (BPF) is run by people with learning disabilities themselves, and with support they decided what the content of the day should be, and how it is delivered. Any changes have been in full consultation, and evaluations are designed, delivered and collated by BPF. Initially part of the presentation was delivered by University lecturers, but by common consent, this is diminishing and will eventually disappear. This is what makes this intervention unique – people who are expected to be helpless victims, incapable even of basic self care skills, are doing what most of the audience would consider themselves incapable of: delivering high quality education for a whole day.

To what extent does your innovation make use of existing approaches, resources or technologies?

With sensitive support, the individuals with learning disabilities have prepared materials that include a variety of mediums: film, audio recordings, poetry readings, personal testimonies, and interactive exercises with the students. They also bring and assemble a large display of the historical timeline of people with learning disability, which was funded by a lottery grant won by BPF. This display is a focal point, and allows for discussions between the presenters and students in break times. Although varied and well chosen, the materials are straightforward; by far the greatest impact is the people themselves.

To what degree has this innovation led to changes in education or clinical practice?

This educational intervention has reinforced the benefits of service user involvement, but also demonstrated what can be achieved with a sensitive approach.

What evidence do you have of the impact of the innovation?

The innovation was commended by NMC reviewers of the nursing programme. However, impact is primarily expressed in the strength of the positive reactions from students taking part in the experience. This has run for two full yearly cycles now, on 7 occasions, with consistently very positive evaluations right across the board. The positivity and clear expression of the learning conveyed in the evaluations is beyond anything experienced by the education professionals involved. Colleagues who take part also convey a similar impact; they are similarly impressed with the speakers.

The evaluations from the students, using forms provided by BPF in Easy Read format, consistently rate the sessions as excellent in well over 90% of the contributions. A notable feature of the qualitative feedback provided by the students is a significant absence of comments about peripheral factors such as the temperature of the room, catering facilities, lack of car parking and so on.

Some quotes from across the groups of students:

‘You all do a fantastic job and I’m very inspired by all the
speakers today. Keep up the fantastic work.’

‘I thought the day was really good, the speakers brought the subject alive and brought real meaning to the day and subject.’

‘This is far more likely to help improve the level of care I give in practice than any other form of teaching.’

‘I enjoyed today’s session. I found it humbling and thought Amanda and Shaine are admirable people, who are selfless, kind and also clever. They showed us as a massive group that we can make a change.’

To what degree has the innovation been disseminated in your organisation or elsewhere?

This service user led education experience has been discussed in various settings in the Faculty. It aroused particular interest in the forum for considering interprofessional education, as it presents an interesting approach to conveying similar ‘big’ ideas to professionally diverse groups.

This theme was reflected in a presentation to a national CAIPE forum in September 2014, which stimulated a debate about how service users and carers are by the nature of their experience, interprofessional. They have no interest in the tribal concerns of competing professional groups, just the quality of the service they provide.

Please provide details of any plans you have to disseminate the innovation in the future.

Having acquired some experience of delivering this innovation, we aim to establish the impact over a period of time for publication in a nurse education journal or similar, with the individuals with learning disabilities taking the lead in writing. As the interprofessional uptake increases we will re-evaluate and publish findings in an interprofessionallly focused publication.