user Involvement (3)

Its to have a laugh and be with others

Charly Harvey discovers it is not only possible to support clients with dementia to express their views on services, but that their feedback can give more valuable pointers to future improvements than health professionals reflections.
User involvement whats your experience? Let us know at the Winter 08 forum, http://members.speechmag.com/forum/.

ccessing the views of our users has been an integral part of the way we work in Medway for the last decade. This has informed changes in service delivery and assisted in service development. Each member of the team is encouraged to continue this process on an annual basis to ensure we meet clients needs and develop as a service. When I started working with people with dementia three years ago, I was keen to find a way to enable this client group to express views themselves, rather than by proxy. In the past most consultations in dementia care have been with carers, but there is a growing recognition that we need to involve people with dementia - and that they can, and want to, express their views on services (DH, 2005). I decided it might be easiest to start by accessing views about a specific event rather than the service in general to overcome the inevitable difficulties with short-term memory that are characteristic of the condition. In March 2008 I ran a 5-week group with the team clinical psychologist and her trainee for people with mild-moderate dementia. We invited five men, all of whom had had input from me focusing on compensatory strategies to overcome word-finding difficulties of varying degrees. One of the invited clients declined as he had recently been admitted to a nursing home following deterioration in his condition. One client attended the first two sessions but then decided to withdraw. His wife, the psychologist and I all agreed that his communication skills had declined below the level of the group. The other three attended all sessions except for two clients missing a session each due to holidays. The structure of the group was loosely based on
Figure 1 Session ratings Week 1 Week 2 Week 3 Week 4 Week 5 Client A 4.4 On holiday 6.1 5.4 4.5 Client B 6.2 6.9 6.7 7.9 On holiday

Cognitive Stimulation Therapy (Spector et al., 2006). The psychology trainee was an observer in all sessions and evaluated each clients communication skills. She rated clients on listening / comprehension, expressive skills and turn-taking, prosody, group involvement and eye contact, on a scale of 1 to 5 which all three staff agreed beforehand. We gathered feedback in three ways: 1. Sessional feedback To gain the views of clients about each session, we modified parts of the VASES (Brumfitt & Sheeran, 1999) and asked them to evaluate the session in terms of a) how cheerful, b) how mixed up, c) how angry, and d) how outgoing they felt during the session. We presented the pictures in this order so that the feedback session started and ended on a question with a positive focus. We offered a range of options in an attempt to gather more qualitative information from people who were less fluent and to allow for the variety and complexity of negative feelings people might have about the group. We were acutely aware that the group situation was a new one for all the clients and as such might be daunting for them, especially as people with dementia often report group conversations to be more challenging. We gave each client one-to-one support to rate the four items and asked them to place a sticker on a line under the pictures to indicate where they rated themselves. The sheets were left anonymous but we noted individual responses so that we could later compare them with how successfully each person had communicated in the group, and analyse any relationship. We gave feedback a numerical rating between 1 and 2, to one decimal place. We then totalled this to give an overall feedback score the higher the overall score, the greater the satisfaction Client C Client D with the session. The maximum possible 5.7 0.9 score was 8. Results 7.6 Left Early are in figure 1. 7.2 / All clients had 8 / their lowest satisfac7.7 / tion score in the first

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

week. All had expressed some degree of anxiety or nervousness about attending the group and the first weeks scores may reflect this. Client As score dropped again in the final week. This may have been because there were only two clients in that session, which affected the dynamic. As comment, make it bigger six people seems to confirm this. Interestingly, the ratings also correlated positively with observer ratings of each clients communication skills. So, those clients who had higher observed communication scores tended to say that they had enjoyed the session more. The client who stopped coming to sessions had given very low enjoyment ratings and his communication skills were noted to be quite significantly more impaired than other group members. The system used for gaining feedback felt successful, although each client did need oneto-one support to remind them how to complete their ratings. It is therefore important to be mindful of not leading the client to place their sticker nearer to one end of the scale! By the final week, all remaining clients were more competent with the system and were starting to use it more independently. This might suggest that, once a simple system is implemented for accessing the views of people with dementia, it should be used more widely within the service to offer consistency. Future projects could look into the practicalities of setting up such a system in a multidisciplinary team setting. 2. End of group feedback At the end of the final session we asked each client six questions in a one-to-one discussion. We employed symbols previously used to represent different sessions as visual reminders. The psychologist and I also had a list of topics / options to go through as a prompt to ensure that our 7

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2008

USER INVOLVEMENT (3)

Figure 2 End of group feedback Client A 1. What did you like about Useful. Informative. Enjoyed itgives you interest. Morning is the best time of day. There was the group? the right number of staff. The group was better than 1-1 but you need some 1-1. 2. What did you not like about the group?

Client B Everyone tried to help everyone. Going straight into it and chatting about. Got on with the others. About the right length and right amount of staff. Right number of weeks and a good time of day.

Client C Have a laugh with the others. Just the right number of sessions, time of day good, happy with the people running the group, liked the venue, dont mind if wife is there or not.

Not enough oomph [Psychology trainee] was Maybe 5 people would be better. Would To be with misery bags people who going like the clappers. (The client was referring to have liked a cup of tea. dont laugh. Nothing else to say that I the fact that the trainee was keeping notes from her did not like. observations throughout and therefore could not join in much). Sessions should have been longer. Make sure all the people are willing candidates. Newspaper article. Discussing holidays. Comparing All of them. Liked sharing photos. prices of different objects. It takes too long to look at everyones photos. Too much going on for one person to manage. Yes. It gives an insight into what you can pass over people. Make it bigger 6 people, 3 of each gender, perhaps a couple of teams.Try to get people who know each other. Make a coffee as an opener and do the newspaper then. Make it harder as it goes on. Mustnt make it too paper oriented. I was worried about the person who sat at the back. Id like to do it again help each other out. Tea. A weekly routine. Discussing jobs and hobbies, showing photos and talking about Korea and the war. Nothing that I did not like. I came and saw and did with whatever is going on. Yes. Its to have a laugh and be with others. It could be a mixed group. That would be nice. Increase number of people in the group 5 instead of 3.

3. Which activity did you like the most? 4. Which activity did you like the least? 5. Would you recommend the group to other people? 6. What could we do to make the group better?

Figure 3 Carers feedback 1. The time of the group was convenient for me and my husband.

All agreed that the time of the sessions was convenient. One person added that times were convenient as long as they had no prior appointments on the dates of the group. Another said that Wednesday would not normally be a good day but the time of the sessions meant that it was convenient.

2. The dates of the group were All agreed that the dates of the sessions were convenient. convenient for me and my husband. 3. I didnt like my husband 3/4 people disagreed, one of these adding that her husband was fine as attending the group without me long as his mood was fine . or a carer. 1/4 strongly disagreed and said that her husband was happy on his own and gave him the confidence he needs . 4. It has been easy to make 2/4 agreed. arrangements to allow my 1/4 neither agreed nor disagreed and said that Wednesday was husband to attend the group. convenient, another day may have not been . 1/4 strongly agreed saying, Its important to put everything else aside for the good of communication . 5. I would not recommend the group to other carers. 6. What did your partner say it was like attending the group? 2/3 people disagreed. 1/3 strongly disagreed and said it was a very useful group . Client As wife He found it helpful. Client Bs wife He enjoyed everyone.

Client Cs wife When he came out and I asked him what it was like he always saidalright, we had a laugh. 7. What was your husbands mood or Happy. Very bright He always seemed to be in a good mood behaviour like following the group? and cheerful. following the group. Especially as he never wanted to go in the morning. No. More Always go shopping on a Wednesday 8. Did you notice any changes confidence, after the group. We went into town, had in your husbands mood or which he needs. coffee, where C speaks to everyone communication after the group? especially the children. He would like to Im sure your Cannot think of anything to improve the 9. Have you any suggestions have had some sort experience is group. C seems happy with the things on how we could improve the of refreshment. enough. youve done. group? A said he enjoyed I was happy For some reason, C always seemed to 10. Any other comments? listening and to bring B and think it was a meeting of the RNA [Royal taking part in he enjoyed Naval Association] and wanted to wear current situations meeting other his blazer and naval tie, and got annoyed and memories people. I feel when I told him it wasnt necessary. of all the other he needs to people and be without me himself. sometimes.

References Brumfitt, S. & Sheeran, P . (1999) VASES (Visual Analogue Self-Esteem Scale). Milton Keynes: Speechmark Publishing Ltd. Department of Health (2005) User and Carer Involvement in Dementia Care. National Institute for Mental Health in England. Available at www.changeagentteam.org.uk/_library/DEMENTIA%20FINAL.doc (Accessed 28 October 2008). Spector, A., Thorgrimsen, L., Woods, B. & Orrell, M. (2006) Making a difference: An evidence-based group programme to offer Cognitive Stimulation therapy (CST) to people with dementia. London: Hawker Publications. Resources www.cstdementia.com - for more information on Spector et al.s Cognitive Stimulation Therapy programme. www.alzheimersforum.org - views of people with dementia on a section of the Alzheimers Society website written by and for people with dementia.

supported conversation was comparable. Responses from the three clients who had attended regularly are in figure 2. Verbatim quotes are in quotation marks, while other information is paraphrased from clients responses. On the whole the feedback was positive and, gratifyingly, each client felt comfortable enough to provide constructive feedback as well. All seemed to pick up on the fact that Client D had not been coping with the group and were sensitive to that. There was a general feeling that the group should be bigger, but also an understanding that too many people would be harder for staff to manage. The statement by one client that the right number of staff ran the group may be evidence of the need to have two members of staff, even for such a small group. This particular client also felt that it could be quite hard work to manage each persons stories and reminiscences. There was general agreement that the scheduling of the group was good, and that we should have offered tea and coffee at the start of the group. With hindsight, this is an obvious rapport-building icebreaker and its a shame that we didnt think of it. 3. Carers feedback After the final session, we also sent the four carers a questionnaire. All four were returned, although one person was unaware of the back page so only answered questions 1-4. The questionnaire contained a combination of fairly closed and more open questions. We phrased some questions negatively (Q3 and Q5) to ensure balance and consistency, and to avoid a scenario where respondents just ticked yes for everything. The carers responses are in figure 3. Again, all respondents felt that the timing of the sessions was appropriate. All felt that their partners had enjoyed the group and it was nice that one of the carers used the opportunity to provide more social stimulation after the group by going into town for a coffee. In future, we could recommend this to other carers as an idea for extending the benefits of the group. The comment about one client always enjoying the group despite never wanting to come in the

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2008

USER INVOLVEMENT (3) morning is interesting. It may be that he became anxious each week about going somewhere without his carer, having forgotten where he was going and who would be there, and then relaxed on seeing the familiar setting, staff and clients from the previous week. In future it might be useful to send home a visual diary / timetable, staff or group photograph (if consent is given) or another object that acts for the individual as a meaningful reminder of the group.

resources

Talking Keyboard

TextSpeak has released the TS-04 wireless Talking Keyboard. Speech is generated as you type in male or female voices. www.textspeak.com/news/tts-04.htm

MS Talent

Taking the group forward

When we initially decided to run this group, most of our thought and preparation related to the content of the sessions. Collecting the feedback was a small part of the process but, in retrospect, it has taught us more about how to take the group forward than our own reflections did. Next time we run the group we will: Extend the time of the session to offer refreshments at the start. Remove some of the monitoring and assessment, which would not only make it easier to run but would also reduce the likelihood of people feeling uncomfortable through the presence of an observer. Make sure we indicate that the carers questionnaire continues on the back page. Offer a visual timetable featuring something meaningful to the client, for use by carers as a reminder before each session. Ensure similar levels of impairment to reduce dropping out rates. Finally, as these clients enjoyed the group, we feel it would be appropriate to invite them again. By doing this, the group can also serve as a support network for the clients as well as a therapy process. The success of the methods used to access views was incredibly rewarding, particularly as the clients were so motivated to give their opinions. By using supported conversation techniques and offering a range of methods for giving feedback, the clients were empowered to comment on their care, something people with dementia are not often given opportunities to do. The techniques we used can work just as well following individual sessions so that clients can comment on therapy as they go through it. The success we had with this group has motivated me to keep adapting my approach to try and access the views of more seSLTP verely impaired clients in the future. Charly Harvey is a Highly Specialist Speech and Language Therapist with Medway PCTs Adult Service, St Bartholomews Hospital, New Road, Rochester, Kent, ME1 1DS, e-mail charlyharvey@ nhs.net. The questionnaires used for end of group and carer feedback are available at http://www. speechmag.com/Members/Extras.

Here to Learn

A DVD due for release by the National Deaf Childrens Society aimed at helping mainstream school staff with little experience of working with deaf children. Further information Freephone 0808 800 8880.

An anthology of original short stories, poetry and personal accounts, MS Talent Volume 2 aims to benefit four charities supporting people with Multiple Sclerosis and raise awareness. MS Talent Volume 2 is 8.95 from www. mstalent.org

Contact a Family Directory offer

Signing Time

Singing Hands have released a new DVD. Its Signing Time features 25 songs with Makaton signs and symbols. www.singinghands.co.uk

The paperback version of the Contact a Family Directory (a guide to medical conditions, disabilities and support) comes with a free copy of the Disability Rights Handbook. www.cafamily.org.uk/medicalinformation/ subscribe.html

Disability swimming

Parent2Parent

A new online service from the National Deaf Childrens Society and the NHS Newborn Hearing Screening Programme to help parents contact similar families with deaf children. www.parentsnetwork.org.uk

British Disability Swimming has released a DVD to encourage the next generation of athletes to take the plunge. E-mail wcpdisability@swimming.org

Hate crime

Gardening for recovery

Thrive has produced a self-management programme to support the recovery through gardening of people affected by heart disease or stroke. Gardening for Hearts and Minds, 8.99, www. thrive.org.uk

A report from Scope, Disability Now magazine and the United Kingdoms Disabled Peoples Council examines disability hate crime and calls for greater awareness training for police and prosecutors. www.timetogetequal.org.uk/page.asp?section=90& sectionTitle=Hate+crime

Bullying signs

Dream-Toys

AbilityNet hopes to capture the Christmas market with a collection of specially adapted toys for children whose disabilities limit their motor skills and dexterity. www.abilitynet.org.uk/newsarticle73

Dont put up with it aims to ensure deaf children and young people are equipped with the information they need to spot the signs of bullying and how to cope with it if it happens to them. Order from NDCS Freephone Helpline 0808 800 8880 or e-mail helpline@ndcs.org.uk.

Cochlear impants

Sense and The Ear Foundation have published a guide for both families and professionals on cochlear implantation for congenitally deafblind children. Deafblindness and Cochlear Implantation, 8.00, www.earfoundation.org.uk/shop/items/102

Spanish stimuli

MaUSECat is a Windows computer-based system for selecting and presenting audio-visual stimuli in English and Spanish to people with communication disorders. http://computerizedprofiling.org/MaUSECat/ index.php

Developmental Journals

Early Support in England has produced Developmental Journals to help families track, record and share their childs progress through the early years. Versions include a generic Early Support Developmental Journal and those for use by families with a child who is deaf, who has Down syndrome, or who has a visual impairment. www.earlysupport.org.uk

Couple Connection

Relationship research organisation One Plus Ones interactive, self-help website for couples includes sections for those who have a child with additional support needs. http://thecoupleconnection.net/

Autism pod

Acknowledgements

Active Designs

Thanks to Nerisha Singh, Clinical Psychologist, for her help in setting up and running the group, and collecting the feedback. Special thanks to all the clients and their carers who took part in the group for giving us such honest and helpful feedback, and for giving me permission to share the information.

Active Designs fabric resources are designed to approach learning in a tactile and hands on way. www.activedesigns.co.uk

Contact a Family has produced a podcast on autism, featuring an interview with one mum and highlighting additional sources of support. www.cafamily.org.uk/news/podcasts.html

SEN standards

Stroke Matters

New quarterly e-publication for professionals in health and social care. Subscribe free e-mail strokematters@stroke.org.uk

Quality Standards for SEN Support and Outreach Services offer suggested markers against which services provided can be evaluated. Download free from www.teachernet.gov.uk 9

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2008

reprinted from www.speechmag.com

Questions to find out clients views (Charly Harvey, Speech & Language Therapy in Practice, Winter 08, pp.7-9) Your views on the group 1. What did you like about the Group? 2. What did you not like about the Group? 3. Which Activity did you like the most? 4. Which Activity did you like the least? 5. Would you recommend the group to other people? Why? 6. What could we do to make the group better?

Questions 1 and 2: Ask about Talking Listening to others Looking at photos Making jokes/having a laugh The people (number, gender, personality) The number of weeks too many, too few, right The time of day of the sessions Talking about the past The people running it Question 3 and 4: Ask about Newspaper articles Places and holidays Your childhood Your jobs and hobbies Grouping pictures together into categories Using numbers and playing dominoes.

reprinted from www.speechmag.com

Carers Questionnaire (Charly Harvey, Speech & Language Therapy in Practice, Winter 08, pp.7-9) We wondered if you could spend a few minutes answering the following questions about the group your husband recently attended. This would be really helpful as it will help us understand what worked in the group and what could be improved in the future. Many thanks. Please circle the option you agree with and write any comments below 1. The time of the group was convenient for me and my husband: Strongly Agree Disagree Neither agree Strongly agree nor disagree disagree Comments:

2. The dates of the group were convenient for me and my husband: Strongly Agree Disagree Neither agree Strongly agree nor disagree disagree Comments:

3. I didnt like my husband attending the group without me or a carer: Strongly Agree Disagree Neither agree Strongly agree nor disagree disagree Comments:

4. It has been easy to make the arrangements to allow my husband to attend the group: Strongly Agree Disagree Neither agree Strongly agree nor disagree disagree Comments:

reprinted from www.speechmag.com

5. I would not recommend the group to other carers: Strongly Agree Disagree Neither agree Strongly agree nor disagree disagree Comments:

6. What did your partner say it was like attending the group? Comments:

7. What was your husbands behaviour like following the group? Comments:

8. Did you notice any changes in your husbands mood or communication after the group? Comments:

9. Have you any suggestions on how we could improve the group? Comments: