Bixley, Morag

Rogers, J.

Woodfield, R.

English

De Montfort University Open Research Archive

People with aphasia, service providers and education working inpartnership to provide long term support for people with aphasiaMorag Bixley, Rob Woodfield and Judith Rogers (mdbixley@dmu.ac.uk)Background InformationLong term language support for people with aphasia is a desirable but expensive healthcare option. Aphasia Leicester is a self help group that aims to supplement the localSpeech and Language Therapy provision. Aphasia Leicester is an organisation wherepeople with aphasia, the Leicestershire County and Rutland Community HealthServices Speech and Language Therapy Department and De Montfort Universityprovide ongoing support to people with aphasia at very little cost to both the serviceprovider and the university. This co-ordinated and accessible approach addresses one of the recommendations of the National Stroke Strategy (2007 p42) as it providesa contribution to the long term care and support for people with aphasia. It alsoadheres to the Policy Statement for Stroke Survivors (2007 p12) produced by theRoyal College of Speech and Language Therapists that suggests Speech andLanguage Therapy Services should work in close partnership with voluntaryorganisations. This model of partnership working between people with aphasia, serviceproviders and educational establishments could be used in areas where currently nolong term provision exits and no additional monies are available to start and maintainsuch an initiative. History of Aphasia Leicester Aphasia Leicester is based on another local self help group for people with aphasia,Aphasia Nottingham. This organisation, based in Nottingham for the last fifteen years,has provided an environment for people with aphasia to have conversations and gain mutual support. Rob Woodfield, a member of this group, moved to Leicester in2004 and identified his need for the informal self help support system that he hadreceived in Nottingham. In January 2005 Rob and Cressida Laywood, the chair ofAphasia Nottingham, approached the Leicestershire Speech and Language TherapyDepartment to discuss setting up a self help group for people with aphasia in Leicester.The Speech and Language Therapy Department welcomed this initiative and the firstAphasia Leicester coffee morning took place in the restaurant of a national retail outletin April 2005. Aphasia LeicesterPeople with aphasia are referred to Aphasia Leicester for support by the local Speechand Language Therapy department. This referral for voluntary organisation support  isrecommended by the National Clinical Guidelines for Stroke (2004 p53). Followingreferral the aphasia group facilitator, Rob Woodfield, sends a letter to the prospectivenew member inviting them to come to any of the Aphasia Leicester meetings.Aphasia Leicester monthly activitiesFirst Wednesday of the month Leicester coffee morningSecond Monday of the month Oakham coffee morningThird Monday of the month Melton Mowbray coffee morningFourth Tuesday of the month Market Harborough coffee morning Fourth Wednesday of the month DMU4 Conversation GroupAphasia Leicester Coffee MorningsAt the coffee mornings people with aphasia and their relatives gather in town centrecoffee shops in Leicestershire and Rutland. These meetings are organised by volunteermembers like Rob. Leicestershire County and Rutland Community Speech andLanguage Therapists also attend the coffee mornings in Leicester and in MarketHarborough. At these meetings people with aphasia have the opportunity to talk toothers, practise their conversation skills and become more able to relax incommunication situations. The groups also offer members the opportunity to socialiseonce a week. Conversations are usually centered around topical news stories. Specialactivities in addition to the coffee mornings have been organised including a Christmasmeal and a narrow boat excursion.  DMU 4 conversationThe DMU4 conversation group provides a more structured and less distractingenvironment for members of Aphasia Leicester to practise and become more confident at communicating with others. DMU4 Conversation started in January 08.The University provide the accommodation and refreshments for the monthly, twohourly meetings. Attendance has been steady and the group has gradually attractednew members. From October 08 Speech and Language Therapy undergraduate students at DeMontfort University have been given the opportunity to meet and talk to people withaphasia. This undergraduate learning opportunity occurs at the same time as thestudents are learning about the theory of aphasia therapy in their second year of thecourse. Within the meetings members participate in group discussions or talkindividually to Speech and Language Therapy students. At the end of each meetingmembers decide upon a topic to talk about at the next meeting. Topics that have beendiscussed include: news stories, Christmas, the war, family trees and three things Iwould change if I ruled the world. EvaluationA focus group of DMU4 Conversation group members reported:I like talking to people here because you’re in the same boatIn society I find half the people don’t understand what a stroke is I had stroke two months not speak and I can talk but two months no I talkconversation yesI think I’m reasonably well Grandchild is fifteen let me know very wellI like to talk to people who’ve got aphasia as well cause you’re out on yourown in society Talk to youMake friendshipsHad lost all confidence when I had this strokeCarers have told us: He’s not quite so isolated People are not just quite happy to walk in and ignore him hereFuture developments• Develop more links with national organisations such as Speakability and UK CONNECT • Develop a more active marketing campaign• Examine what attracts people to each of the groups and what other activities they might like to explore such as painting courses, wellbeing sessions and writing workshops• Develop links with neighbouring self help groupsFuture challenges • Recruiting people with aphasia as coffee morning and group facilitators • Retaining the goodwill and staffing resource of the local health authority and the university • Integrating the different needs of the group members• Measuring the impact of Aphasia LeicesterConclusionThis model of partnership working between people with aphasia, service providersand educational establishments could be used in areas where currently no long term provision exits and no additional monies are available to start and maintain suchan initiative. ReferencesDepartment of Health (2007) National Stroke Strategy. London: Department of Health.Royal College of Physicians of London (2004) National Clinical Guidelines for Stroke.Second Edition. London: Royal College of Physicians of London.Royal College Of Speech and Language Therapists (2007) Policy statement: Thespecialist contribution of speech and language therapists along the care pathway forstroke survivors. London: Royal College of Speech and Language Therapists.2009 Jan Feb Mar April May June JulyPWA 12 12 14 12 9 11 12Therapists 1 1 1 1 1 1 1Students 3 3 3 2 3 1 1Total 16 16 18 15 13 13 142008 Jan Feb Mar April May June July Aug Sept Oct NovPWA 7 9 12 9 9 9 9 12 12 12 14Therapists 4 2 1 1 1 0 1 1 1 1 1Students N/A N/A N/A N/A N/A N/A N/A N/A N/A 3 1Total 11 11 13 10 10 9 10 13 13 16 16DMU 4 Conversation Group

People with aphasia, service providers and education working in partnership to provide long-term support for people with aphasia.

https://dora.dmu.ac.uk/bitstream/2086/11096/1/aphasia%20leicester%202009.pdf

People with aphasia, service providers and education working in partnership to provide long-term support for people with aphasia.

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