USER INVOLVEMENT (4)

Advocating partnership
Lois Cameron and Sally Boa describe a joint project with their local advocacy service for people with learning disabilities, which is enabling service users to collect and give useful feedback to advocacy workers using the low tech communication framework Talking Mats.
User involvement whats your experience? Let us know at the Spring 09 forum, http://members. speechmag.com/forum/.
dvocacy into Action provides a range of independent advocacy services to people with learning disabilities in Falkirk and Clackmannanshire. It aims to help, support, and promote the welfare of adults with a learning disability by enabling them to make decisions and have their voices heard. The advocacy group wanted to involve people with a learning disability in collecting and giving feedback to their advocacy workers. They had recognised that their existing method of gaining feedback from service users via a questionnaire was inaccessible for many of the users, and that the quality of the information gained was not always helpful for improving services. Advocacy into Action therefore approached the AAC Research Unit at the University of Stirling to see if a tool could be developed which would allow more people with a learning disability to give their views about advocacy services. We are grateful to Stirling University Research and Enterprise (SURE) who funded our subsequent joint project through a European Regional Development Fund and to Clackmannanshire Council and Falkirk Council for funding the travel of the participants. We began by holding a course for people with learning disabilities to: 1. Teach them to use the Talking Mats framework as a method of interviewing people 2. Involve them in selecting the most appropriate symbols so that Talking Mats could be used to help people give feedback about their experience of using advocacy services. Talking Mats is a low tech communication framework involving a textured doormat and sets of symbols. It was ideal for this project as it is designed to help people with communication difficulties reflect on their experiences and express their views. The course was run by two trainers and comprised of six sessions lasting two and half hours each. There was a three week break after the third session to accommodate the Christmas holidays. The training was planned for 8 people but, as 10 people from the advocacy group wished to come, we accommodated them all. The participants had all volunteered to participate. They all had a learning disability and
OUR SERIES AIMS TO SHOW THAT USER INVOLVEMENT CAN BE TRANSFORMATIONAL FOR CLIENTS, THERAPISTS AND SERVICES PUT INTO PRACTICE AT MANY DIFFERENT LEVELS A POWERFUL TOOL FOR INFLUENCING COMMISSIONERS

good verbal communication skills. Their literacy skills varied; l-r Sally Boa and Lois Cameron some had good reading skills and some had no or very limited literacy. Attendance was i. We taught the concept of open and closed exemplary over the six sessions - only two peoquestions using open and closed boxes with ple missed a total of three sessions through illdiffering amounts of Christmas decorations ness. All the participants played an active and inside to get over the idea that you gain much enthusiastic part in the training. more information from an open question than We customised the training using the princia closed one. ples of accessible information (SEAT, 2007). Ses- ii. We adapted the game of Family Fortunes to sion programmes and handouts all had simple enable participants to begin to think about the language, bullet points and key pictures (figure options they would include in a Talking Mat. In 1). We gave thought to both the amount of inthe first session after Christmas, we asked group formation and the pictorial support required to members to think about which symbols they aid and support understanding. We structured might use to find out someones views about sessions so that the format was familiar but Christmas. Prior to the session, we had made a each session contained something that was list of possible options which were important different, new and fun. We hoped this would to us (such as Christmas dinner, presents, TV). stimulate conversation and aid memory and We asked group members to come up with retention of concepts. We gave consideration their own suggestions to see if they matched. to the way information was delivered and used Using the Family Fortunes format made the games and visual signifiers to teach abstract session fun and also helped the group to see concepts, for example: that different things are important to different people and that there were no right or wrong Figure 1 Accessible session programme answers. It also helped to reinforce the importance of having blanks available so people can come up with their own options. Throughout the course, there was plenty of time for repetition and over learning. Each session began with a recap of the previous weeks learning. As the course progressed, the participants became more confident about taking responsibility for their own learning and, by the end, one participant took charge of the recap session. Recap session

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Active learners

Figure 2 Prompt sheet

The participants were active learners, asking lots of questions and making many comments. They were very supportive and encouraging to each other as the following dialogue shows: The one thing I forgot is how to ask open questions. (Debbie) No, I didnt think so, you did a good job last week. (Julian) I seen you, and you were confident. (Mary) As a group, the participants were extremely skilled and sensitive about giving each other feedback. The experience of receiving communication feedback appeared to be new to them and they needed to be reassured so they did not overplay any negative comments. Creating an atmosphere in which it was alright to make mistakes and learn from them was important. Giving each other feedback At the end of the course all the participants could use the framework, but different levels of support were needed to complete a successful interview using Talking Mats: Four of the group could complete an interview independently and without prompts, remembering the five stages. (Each participant was given a symbolised prompt sheet to help them remember the stages see figure 2.) Two of the group could complete an interview with some prompts and support and with continued practice could achieve independent interviewing. Four people needed support to remember the individual stages but with that support could complete an interview using Talking Mats.

Figure 3 Completed Mat tening has been placed on the negative side, suggesting that the person did not feel that they had been fully listened to. The person also commented that the changes that had taken place since they had worked with their advocate had happened too slowly. On the positive side, the person was able to comment that they had been satisfied with their advocacy workers communication, time keeping and work and that they would use advocacy services again. This feedback was very useful for advocacy staff in terms of gaining more objective responses about their services. We have also discussed a sustainable interview procedure with the manager of Advocacy into Action to enable this to continue when the project is finished. There have been five clear outcomes to the project: 1. A training course suitable for people with learning disabilities has been designed and used. 2. Ten people completed the course and received certificates of achievement. There was considerable commitment to the course by all participants and evidence of significant personal development. 3. A customised interview schedule and symbol sets have been designed for use by Advocacy into Action. 4. The schedule and symbols will be used to give feedback and contribute to the quality assurance of the Advocacy into Action service. 5. Discussions will take place about use of the skills developed in the group with advocacy and local organisations through Falkirk and Clackmannanshire Council and NHS Forth Valley. We were confident that at least four of the participants would be able to use Talking Mats independently to interview people about their experience of using advocacy services. However, a number of issues have arisen while we have been supporting participants to carry out their first interviews, which will be important to note when planning future initiatives: People require support with many of the social aspects of starting and finishing an interview. Getting through the door and starting introductions involves a number of skills that our interviewers need help with. People who use Advocacy into Action have a range of learning disabilities. Not all people will be able to use Talking Mats, so information about potential interviewees is

We gathered participants views about the training on an ongoing basis and recorded the quotes used in this article verbatim as the training was carried out. All the participants seemed to get a lot from the training. Initially several seemed nervous and unsure, but this diminished over the first few sessions and their confidence appeared to build week on week. a) The participants appreciated the customised session programmes and handouts: If I did not have the notes I would forget; my memory is like a sieve. (John) b) The participants appreciated the way information was delivered: I like the way you explain it you make it easy, its not double dutch. (Julian) c) The participants felt they had changed and developed: I think we have all improved. (Michael) d) The participants reported practising and using Talking Mats outside the sessions: I was showing how to do Talking Mats with Jim. He thought it was brilliant and I showed him all about it. (Angela) e) We have some workers down at our projects and they dont understand what Talking Mats is all about and we do. (Stuart) These comments reflected the growing sense of self-esteem and feeling of achievement that developed among participants as the course progressed.

Involving people

The group developed the Advocacy Talking Mat, an interview tool which will be used to gain feedback on the advocacy service. They discussed and chose the symbols and then trialled them through interviews involving role play. This resulted in some honest discussion about the symbols which were chosen from Boardmaker and clip art. For example, participants were keen to ensure that the symbol chosen for independence reflected the concept for a wheelchair user as well as someone who was able to walk. Discussion about one of the symbols for communication resulted in the following comment: why has he got a fish bone coming out of his mouth? This reiterates the importance of involving people with learning disability in discussions about symbol selection for accessible materials. We have provided follow-up sessions to support the participants in carrying out real life interviews with people who have used the Advocacy into Action service. Figure 3 is an example of a completed Mat where someone is giving their views about their advocate. Here, symbols have been placed on both the negative and positive sides of the mat. Lis-

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USER INVOLVEMENT (4) / AAc

needed ahead of time. We have developed a pro forma which will provide information about peoples comprehension levels as well as vision, hearing and physical abilities. Consideration needs to be given to matching interviewers with the right interviewee. This will be done on a case by case basis through discussion with people who know the client well. For those who are not confident as interviewers, we are looking for projects to enable them to work in pairs so that they can continue to maintain and develop their skills. Overall, this project has been successful in terms of developing an interview schedule and symbol sets for using Talking Mats to find out peoples views of advocacy services. The process of teaching people with a learning disability to use Talking Mats was a rich experience for all involved and resulted in increased confidence for all participants: This group is great cause everybody gets involved. (Julian) It just shows what a lot of information you can get from such a small thing. (John) I was really scared at first. I nearly did not come the first time but I have enjoyed it and I can do Talking Mats now. (Corrine) Sally Boa and Lois Cameron are speech and language therapists at the AAC Research Unit, University of Stirling and NHS Forth Valley, e-mail sally.boa@nhs.net. SLTP

E-MAIL TO THE EDITOR

COMMUNICATION AIDS RESEARCH: Call for participation
Hi Avril, I would like to invite speech and language therapists to participate in a national survey being conducted as part of the Devices for Dignity (D4D) project. D4D is one of two pilot Healthcare Technology Co-operatives in England funded by the Department of Health. The D4D-HTC is a collaboration between clinicians, patients, academia and industry. It addresses issues of dignity and independence through its focus on the design, development and evaluation of medical devices to improve healthcare quality and well-being for patients with long-term conditions. One of the three themes identified in D4D is that of assistive technology. Of particular relevance for speech and language therapists is the Alternative and Augmentative Communication (AAC) project within this theme. The AAC project is being led by myself and Simon Judge, Senior Clinical Scientist with Barnsley Assistive Technology Team. We will be exploring users, carers and professionals perceptions of communication aid design. We aim to identify areas for improvement, future research and development in the design of communication aids. We are currently recruiting participants for the survey: 1. speech and language therapists with experience of working with clients who use aided communication 2. clients who use any form of aided communication (high tech, low tech, even no tech), or who have done so in the past, and 3. their carers. Clients can be of any age, medical diagnosis, language level and physical ability. Our only inclusion criteria are that they have an opinion about voice output communication aids (positive and negative views welcomed) and are able to complete a questionnaire with or without support from a carer. When our survey is complete we aim to disseminate the findings through a number of speech and language therapy / AAC channels and to share the information with communication aid manufacturers. If any readers would like to know more about D4D or are interested in participating in the survey, either by completing a questionnaire or by distributing questionnaires to clients and carers, you can do one of the following: go to http://www.devicesfordignity.org.uk/aac (to download the questionnaire after 1st April 2009) email your request and your contact details to alison.keys@nhs.net phone 01226 432159 to ask for further information or to request copies of the questionnaire. Stamped addressed return envelopes will be provided with the questionnaires. The questionnaires will be available as text, large print and symbolised (specify PCS or Rebus when requesting them). Thank you, Gill Townend Research Speech and Language Therapist, Sheffield PCT e-mail gill.townend@nhs.net

Acknowledgements

Our thanks go to Angela, Corrine, Debbie, Eddie, John, Julian, Michael, Ross and Stuart, who took part in this training course, for their enthusiasm and commitment. All photographs and quotes are used with permission from the participants.

Reference

SEAT Learning Disabilities Managed Care Network Making things clearer Group (2007) Guidance for making written information easier to understand. Edinburgh: NHS Scotland. Available at: http:// www.ldmcn.scot.nhs.uk/accessible_comms. htm (Accessed 20 January 2009).

Boardmaker - www.mayer-johnson.com/ Talking Mats www.talkingmats.com REFLECTIONS DO I INVOLVE CLIENTS IN SELECTING THE CONTENT OF ACCESSIBLE MATERIALS? DO I CREATE AN ATMOSPHERE WHERE PEOPLE FEEL COMFORTABLE WITH MAKING MISTAKES AND LEARNING FROM THEM? DO I ENSURE TRAINING HAS SUFFICIENT ELEMENTS OF FUN, FAMILIARITY AND NEW IDEAS?

Resources

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SPEECH & LANGUAGE THERAPY IN PRACTICE spring 2009