ACCESS

Out in Eden
Maggie Wallis, with Sandra Hewitt and Kari-Ann Johnston, reflects on the happy accident that led to an ongoing connection between staff at a citys community arts centre, speech and language therapists and people with aphasia, where joint responsibility for communication is seen as the key to access and inclusion.
READ THIS IF YOU WANT TO TAKE THERAPY BEYOND THE CLINIC FACILITATE SELF-HELP OFFER MEANINGFUL TRAINING They attended the drama group the following week, and both were pleased they had done so. As well as this developing into a regular habit, they began to attend other things at Eden Court, including film, dance, shows and drama. Before long they were frequent visitors, becoming a formidable pair: John the bolder personality, and Alan with more readily available speech. By their very presence they were beginning to influence the staff at Eden Court, and define how their services could be used. Alan and John were also part of a larger supportive group for people living with stroke. We were coming to an end of our block of meetings and thought it would be fun to mark this by attending an event at Eden Court. We arranged to go for a pre-theatre meal then see the production Run for Your Wife. As we had been discussing the development of a service users group, we thought it would be useful to record our experiences while attending the theatre. It was a successful evening but with a fair degree of stress involved, largely because of various situations where communication broke down. Though aphasia and dysarthria were obvious hindrances, often the source of the communication difficulty seemed to lie in the organisation or layout of the theatre.

Eden Court, Inverness, www.eden-court.co.uk

any happy accidents occur during the course of a day. Noticing and making good use of them can provide an added dimension to therapy. It was in this way that the Eden Court Project came to being. I work in the centre of Inverness, in what remains of the old Infirmary. Along from the hospital is the citys theatre. (Yes, Inverness is now officially a city!) It was closed for a significant period for redevelopment and reopened at the end of 2007 with a lot of publicity about new activities and potential within the complex. There was a desire that the theatre would become more of a community venue, and it was hosting a variety of sampler classes to find out what the uptake might be. For a while I had been interested in finding opportunities for clients that took them beyond the clinic room in ways that were relevant and of interest to the individual. I was working with a couple of men in their late fifties/early sixties. Alan and John had both experienced strokes which had revolutionised their lives. Their main means of getting around was now wheelchair and their

speech had been significantly affected, Johns by aphasia and Alans by dysarthria. John was keen to find ways of connecting with the outside world again. On his behalf, I went to speak to a drama worker to find out who could participate in Eden Courts integrated drama group, and discovered it would be defined by those who attended. I asked drama artist John Batty, who oversees drama work at Eden Court, if he might come along to meet John to talk about possibilities within the theatre. Because it was a nice day, we ended this time by going to Eden Court where we were given a guided tour. Though unplanned, physically going around the new building was an important bridge in empowering John to access the theatre facilities. The following week I had planned to see both clients for a combined session, to explore whether they might be able to support each other in conversation. We discussed the integrated drama group, and they decided to attend together. Alan was not interested in drama; his only motivation at this time was to support John.

Influence

Three speech and language therapists (myself, Sandra Hewitt and Janet Jardine) were involved in the service users group start-up. We wanted to enable our clients with aphasia to influence how services were provided in their vicinity, beginning with the one we offered as speech and language therapists. We decided on the name CLASP (Communication and Living After Stroke Partnership). The group met in the newly built Health Sciences Building, which is not part of the hospital premises. Transport could not be arranged as the group was not part of ongoing therapy. This made it more difficult for people further afield, but allowed those who did attend to do so as independent people. The focus of the first CLASP meeting was the experience of our attendance at Eden Court. Following discussion centred around an evaluation form, we collated a list of points to convey to theatre management (figure 1).

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We duly sent a letter and included a copy of Connects publication Access to the Arts (Jennings et al., 2006). We received a positive reply suggesting we meet with Kari-Ann, the front of house manager, to discuss things further. We arranged a date, and two of the service users group came along with me to discuss our theatre experience. Kari-Ann was very keen to ensure the theatre was inclusive. She already had experience of working with John and Alan and knew about the kind of communication breakdown that could arise. It was obvious that the theatre was experiencing a few teething problems since its reopening. Some could only be remedied by changes to the building and signage, but there was no funding, and they were beyond the remit of the front of house manager. What she did see as readily changeable was the communication behaviour of her staff. We decided to explore the possibility of providing training to enable staff to be more resourceful when dealing with people who have communication difficulties. This idea was given the blessing of NHS Highland who generously agreed to fund six of our service users to attend two shows - one before and one after the training - as a measure of its effectiveness. Eden Court theatre paid for two speech and language therapists to attend these shows too.

Spacious and easy to move around, even with wheelchairs

Signage is not well positioned No indication of finishing times for shows / cinema for people being collected or organising taxis Theatre environment Doors to toilets could not be managed without assistance for wheelchair users Seating in stalls was hard for wheelchair users to manoeuvre into Round tables provided for wheelchair access did not allow us to sit as a group Entrance and eating area tend to be noisy because of open design and lack of furnishings Our clients would prefer not to speak to strangers if at all possible; would be difficult to avoid in this environment

Provision of easy to read menu made choosing and indicating choice much easier

Meals were tasty and well-presented Eric says of himself: Meal Arrived for meal 1 hours prior to performance, but were rushing to get seats 2 minutes before the show Time pressure spoiled enjoyment of eating and made paying / finding toilet facilities and seats much more stressful Paying was complicated

Ready to adapt

Staff

Waiters were respectful and patient Theatre staff were patient and proactive

Sandra had been trained to use Connects Access material. We had a look at this together and decided to base the training on this but using some of our own adaptations so it could be more specifically relevant to the environment of the theatre. We thrashed out more detail in a planning meeting with Kari-Ann, the drama artist and one of the service users. Drama artist John Batty made the point that effective communication is the joint responsibility of staff and service users: both sides must be ready to adapt how they do things. We talked about the possibility of the theatre arranging induction tours for service users with particular needs, so they would know beforehand how to make best use of the theatre environment and the theatre would be better informed about the needs of specific client groups. These days now happen on a regular basis. We also discussed the possibility of the theatre keeping details of client needs on their database so that individuals could be appropriately catered for. Also from this meeting another idea arose. John Batty agreed to collaborate with me to create a short DVD, demonstrating the types of communication breakdown that can arise for people with aphasia using the theatre. The idea was to use this film footage as a starting point for discussion during the training. Three of our service users agreed to participate in the film. It was relatively easy to create scenarios within the theatre context that tested their communication skills, as

Not easy to recognise staff outside of reception area to ask for directions or help With further training specific to people with communication issues, the waiters could have enabled the eating process to flow more smoothly Figure 1 Points CLASP conveyed to theatre management

by this time we had some pointers from attending our pre-training show. On an arranged day we turned up at the theatre, where three staff had also agreed to participate. Prior to each filming, I took aside one of the service users and primed them as to the nature of the scenario. Without rehearsal, I filmed them interacting with a staff member who although aware that the individual had difficulties - had no prior knowledge of the intention of the communication. So each staff member and the individual living with stroke required skill in listening and delivering information. This proved a fruitful exercise for many reasons: 1. The scenes created were less abstract than role play. They derived from situations that each participant had come across within that environment. 2. The service users were participating in real communication but, because the situations were contrived, there was less anxiety about failure. 3. Each service user and the speech and language therapists observing gained useful insights about communication

capacity and practical ways of making this more effective. For instance, it became evident that one of the service users could benefit himself and those around him by carrying a communication passport. He had been resistant to this idea but, when he saw the playback of the film, was able to reflect how his lack of props had inhibited the flow of communication. Another service user had developed her own passport in a credit card wallet, and he found its size and portability pleasing. The speech and language therapist helped him develop his own. He uses taxis often and, if the time needs to be changed, is reliant on others to make the call to his taxi company. We created a page with a clock and a series of statements - I want to cancel my taxi / I want my taxi to come earlier / I want my taxi to come later. 4. What impacted on me more than anything was that each person living with aphasia chose to compromise what they were asking for. If it were

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possible to get an approximation to their intention, that was generally good enough. Perhaps chose is not the right word. Maybe each of them felt obliged to compromise what they were asking for, and that is one of the effects of living with aphasia? 5. Those who attended the training found the film material readily accessible because it related to their own environment. We left the practicalities of the training sessions to Kari-Ann. We agreed to carry out an afternoon and an evening two hour session to cater for different staff shifts. In all, thirty five people attended the training, a high proportion of the theatre staff. The staff responded well to the opportunity to discuss communication. We discovered they generally have other daytime jobs and bring their own perspective to the theatre work, which is mainly for enjoyment. Because people had already experienced the difficulties that can arise when someone has specific difficulty with communication, they were eager to discuss and discover solutions. The combination of the Connect material and the film allowed staff to apply what they had learned to the scenarios they were observing and suggest ways that communication could be improved.

Alan and John with Ruby, a drama worker, at the integrated drama group

Sandra Hewitt comments:

Connects The Communication Access Toolkit provided us with an excellent basis for the two hour training sessions. Both sessions turned out to be lively, interactive and fun. We included and discussed; What is communication? What is a communication disability? What is access? How to make services accessible for people with a communication disability. Making interactions, environments and documents accessible. Much of this was achieved through workshops, discussions and encouraging participants to draw on their own experiences and examples. The main focus of the training, however, became about interactions, the issues and problems that arise and how these might be overcome. The DVD material was excellent because it was relevant, real and clear, promoting much reflection amidst moments of humour, comedy and poignancy. At times we added to the discussion by highlighting issues, for example, In this clip, are there any misunderstandings that occur? How could these be avoided? What might have helped Mary book her seats? The feedback suggested most people found the video clips the most useful and memorable thing. We were pleased that the training overall was described as practical, useful, relevant and proactive. One comment perhaps sums up what we were trying to say: Not to be afraid to try and help and that its OK to ask for help.

This work is ongoing. The connection with the theatre is now made, and we are looking at ways of making its facilities available to other groups who might struggle with inclusion. I am liaising with staff to create a book to support communication in moments of crisis. The contents should enable people with communication difficulties to indicate more clearly what choices they wish to make if, for instance, they become unwell whilst at the theatre. Several of the folk with aphasia now carry a credit card size wallet with supportive information in it, following the lead of their colleague who took part in the filming. The DVD is being used widely as educational material, and has many applications. We are hoping to get funding to replicate this kind of work in the hospital environment, again using the technique of real drama to illustrate to hospital staff how communication can be enhanced within this environment.

The Eden Court perspective (Kari-Ann Johnston)

At the beginning of last year I had just started my day by going through a pile of paperwork on my desk when I came across a feedback form. It was from a group who had visited Eden Court with various access requirements. As the largest community arts centre in Scotland, a variety of people come through the doors. On any one day there are films, education classes and sold out performance going on at the same time - this can be a daunting experience if you have never visited Eden Court before. I work in this beautiful building every day so I am comfortable with my surroundings but

it wasnt until I got the feedback from Maggies group that it took me back to my first day and being in awe at the size of the building, if not slightly apprehensive about how many events can congregate under one roof. It made me think, what if I had access requirements, how would I feel then? What if I needed assistance from a member of staff but there was a communication barrier? The feedback highlighted areas we could improve on, areas we werent even aware could be problematic if you have communication difficulties. Meeting the service users and Maggie was an eye opener. Its easy to take the environment around you for granted, but to hear first hand how challenging it could be for someone with communication difficulties to visit Eden Court was insightful. With more meetings Maggie suggested training customer facing staff using the feedback from the group and combining this information with Maggie and Sandras experience. Soon the training sessions were devised and planned and we were all raring to go. We had a brilliant staff turnout to the sessions which were engaging, informative and fun. The staff enjoyed the training, in fact they were buzzing from it. The sessions raised everyones awareness about communication difficulties and how to respond in difficult or stressful situations but also reassured staff that it is ok to assist someone who may require help - they wont be offended. The experience allowed us to see its not just organisations that need to take responsibility about access. Individuals should also be taking responsibility about giving their

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Editors choice

So many journals, so little time! Editor Avril Nicoll gives a brief flavour of articles that have got her thinking.

l-r, John, Mary, Maggie Wallis and Alan after attending a Buddy Holly show!

access information. This allows the needs of the patrons to be met which in turn means a smoother and less stressful visit. Since the training we have made small steps to try and improve our services: working with different groups of people with disabilities, regular access training, and more interpreted performances than ever before. We have a virtual BSL interpreted tour of the building on youtube, Autism Friendly Film Screenings every two months and we offer familiarisation tours. With this one feedback form and support from the NHS speech and language therapy department, Eden Court has made positive changes which are ongoing with the help of groups or individuals talking to us and giving us their constructive criticism. So indeed it just goes to show where happy SLTP accidents can lead you! Maggie Wallis (email maggie.wallis@nhs.net) and Sandra Hewitt are speech and language therapists with NHS Highland. Kari-Ann Johnston is front of house manager at Eden Court Theatre, www.eden-court.co.uk.

Resource

Clinicians are hungry for evidence based recommendations about working with adolescents, but this research is of wider interest. In I dont come out with big words like other people: Interviewing adolescents as part of language profiling, Sarah Spencer, Judy Clegg and Joy Stackhouse uncover two 15 year olds with previously unidentified language difficulties then find out what they think about their talking, explaining (the difference is important), listening and understanding. Most exciting is the clinical application for setting relevant and motivating targets in partnership with clients and identifying effective learning strategies. A reminder that, when we get better at asking their opinion, clients get better at giving us clues to making therapy work. Child Language Teaching & Therapy (2010), 26(2), pp.144-162 Using visual scene displays to create a shared communication space for a person with aphasia involves only one client, one visual scene (pictures and words around his vintage car hobby) and 9 new communication partners. However I like the way Karen Hux, Megan Buechter, Sarah Wallace and Kristy Weissling distinguish restorative from compensatory intervention strategies and communicative from linguistic competence. If someone or their communication partner doubts the value of low tech aids, their approach of comparing a shared scene / only the person with aphasia seeing it / neither having access could make the benefits explicit. Aphasiology (2010), 24(5), pp.643-660 I accept this may be leftfield - and cant pretend to understand it all - but Jake Harwoods The contact space: a novel framework for intergroup contact research might just give pointers to innovative ways of promoting inclusion. The article addresses how different types of exposure to people who are different from ourselves might develop or reinforce harmony or prejudice. Its not a major leap to imagine how this might help us support our clients to find new ways of experiencing fulfilling social lives. This might involve thinking about ways to: use the media, interactive technology and imagined scenarios, work with communication partners, deal with anxiety, self-disclosure and different personality types and offer face to face versus other contacts. Journal of Language & Social Psychology (2010), 29(2), pp.147-177

The Communication Access Toolkit - How to make your interactions, documents and environment accessible to someone with communication disability is a Connect publication available as part of a 2 day training course, Making Communication Access a Reality. For details, see http://www.ukconnect.org/ connectcourses_19_289.aspx.

Reference

Jennings, M., McVicker, S. & Firenza, C. (2006) Access to the Arts for People with Communication Disability. London: Connect Press.

REFLECTIONS DO I NOTICE AND TAKE ADVANTAGE OF EVERYDAY HAPPY ACCIDENTS? DO I WORK WITH CLIENTS AND STAFF IN COMMUNITY SETTINGS? DO I USE VIDEO AND REAL DRAMA TO CHANGE COMMUNICATION BEHAVIOUR?

Acknowledgements

Thanks to Eden Court for their cooperation, and especially to Kari-Ann and John Batty for creating the DVD. Also to John Pierre Sieczkarek, NHS Assistant Manager for SE Highland CHP, who supported the project by funding the group to attend two shows.

What difference has this article made to you? Please see the information about Speech & Language Therapy in Practices Critical Friends at www.speechmag.com/ About/Friends and let us know.

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