Many thanks to Cheryl Strutt for this lovely blog about how she developed and used an Aromatherapy Talking Mat with people with learning disability.

I am an Aromatherapist who works with adults who have a learning disability and often additional communication difficulties. As part of a recent service review I wanted to develop patient involvement. Talking Mats (TM) was suggested as a possible option to support patient feedback. I decided to look into this tool further and access training. During my TMs training I was supported to develop my specific Aromatherapy TM. The main aim behind this initiative was to adopt a system that could identify how each patient felt about the service and identify if there were areas where changes or improvements could be made. I wanted to work closely, alongside each patient, in order to learn how they really felt about their Aromatherapy treatments, their likes/dislikes etc. and to give them a sense of ownership of their sessions. It’s all about giving individuals with a communication difficulty a voice that can be heard.

The Aromatherapy TM supported patients to understand what is involved in an aromatherapy session and has been effective in helping them to personalise their session.

I used the Aromatherapy TM within the patient’s first session and following their last session, taking a photograph of the completed mats as evidence. The TM is an excellent way of offering a range of different types of massage experience and the patient can select their preferences. I found it an excellent way, to obtain valuable feedback on patient experience. One patient with a severe learning disability and autism was able through the use of symbols, to indicate his dislike for the music being played during his Aromatherapy session. He has no verbal means of communication and feedback like this would not have been achieved if the Aromatherapy TM wasn’t used. Through the implementation of the TM I now have evidence of patient centred practice, in relation to the therapeutic value of the Aromatherapy Service. The Aromatherapy TM supported patients to understand what is involved in an aromatherapy session and has been effective in helping them to personalise their session.

Since the implementation of the Aromatherapy TM, patient feedback is now at the heart of the Service. The patient is now able to openly give comments, make choices on their treatment plan, which in turn is making their attendance at the department, a very pleasurable one and it’s very personal to the individual. Another patient who said that he wasn’t able to read or write, was able to explain what the symbols meant and chose the symbol for happy. He went on to indicate his preferences stating ‘I like foot-spa and a foot massage.’ Prior to using the TMs, I was often reliant on observing the patient’s body language to assess their level of enjoyment and gain feedback. The Aromatherapy TM now allows for a more accurate method of evaluating interventions. I am so enthusiastic about the increased level of patient involvement and the willingness of the patients to become involved in this activity. This project clearly demonstrates the value of involvement, leading to improved partnership working and better experiences.

Cheryl Strutt, Aromatherapist, Cheryl.strutt@belfasttrust.hscni.net

Many thanks to Greg Cigan for this great blog about his study that explored how children and young people with an intellectual disability feel about undergoing clinical procedures.

A clinical procedure is any activity performed by a healthcare practitioner to diagnose, monitor and/or treat an illness such as blood pressure testing, x-rays and other scans (Cigan et al., 2016). While some procedures cause no pain or only mild discomfort when completed, others can be prolonged and potentially painful (Coyne and Scott, 2014). Children and young people with an intellectual disability are more likely to develop physical illnesses including epilepsy and digestive disorders than the general population and can be frequently required to undergo healthcare procedures (Emerson et al., 2011; Short and Calder, 2013). Yet, there is currently little empirical research reporting how children and young people with an intellectual disability experience procedures (Peninsula Cerebra Research Unit, 2016). More research is required so that healthcare services can better understand the needs of children and young people with an intellectual disability (Oulton et al., 2016). As part of my doctoral studies at Edge Hill University, I am conducting a study that explores how children and young people with an intellectual disability experience having a clinical procedure.

From the outset of the study, I felt it was important to obtain data directly from children and young people rather than relying on parents and carers to speak on their behalf. I was keen to adopt methods during interviews that would enable as many children and young people as possible to take part, including those who find verbal communication challenging. After researching different methods, I chose to utilise Talking Mats as the innovative design of the tool offered children and young people the option to express their views entirely non-verbally should they wish to by arranging symbol cards. To date, I have interviewed 11 children and young people about their experiences of undergoing procedures. Each participant was between 7-15 years of age at the time of the interview and had a mild to moderate intellectual disability.

Prior to an interview beginning, I spent time describing and showing each child/young person a Talking Mat and asked whether they would like to use the tool during their interview. Out of the 11 children and young people I have interviewed, three used a Talking Mat. Those that chose not to use the tool were older children who were confident having a verbal conversation with me or those who had a visual disability and could not see the symbols. In all cases, the decision of the child/young person in relation to using the Talking Mats was respected.

The three children who used the Talking Mats were able to express their views non-verbally and also seemed to convey more information than some of those who chose not to use the tool. Viewing the symbol cards within a Talking Mat appeared to help children and young people break down information into smaller chunks which then made it easier for them to process and discuss. Indeed, using a Talking Mat led all three children to discuss information that was new to their parents who sat in while s/he was being interviewed. An example of a completed Talking Mat is shown below which was created by an 11-year-old boy during his interview. The boy clearly expressed that he did not enjoy his experience of having a clinical procedure.

Within my study, I feel using Talking Mats has helped to augment the verbal communication of some of the children and young people which in turn enabled them to take part in interviews and share their views and experiences of procedures. Talking Mats are a valuable tool for researchers working within the field of intellectual disabilities. If used more widely, Talking Mats has the potential to enable more children and young people with intellectual disabilities to have the opportunity to be involved and express their views within healthcare research.

Reference List

CIGAN, G., BRAY, L., JACK, B. A. and KAEHNE, A., 2016. “It Was Kind of Scary”: The Experiences of Children and Young People with an Intellectual Disability of Undergoing Clinical Procedures in Healthcare Settings. Poster Presented at the 16th Seattle Club Conference (Awarded Best Poster Prize), 12-13 December. Glasgow: Glasgow Caledonian University.
COYNE, I. and SCOTT, P., 2014. Alternatives to Restraining Children for Clinical Procedures. Nursing Children and Young People, 26(2), pp. 22-27.
EMERSON, E., BAINES, S., ALLERTON, L. and WELCH, V., 2011. Health Inequalities and People with Learning Disabilities in the UK: 2011. Lancaster: Improving Health and Lives: Learning Disabilities Observatory.
PENINSULA CEREBRA RESEARCH UNIT, 2016. What’s the Evidence? Reducing Distress & Improving Cooperation with Invasive Medical Procedures for Children with Neurodisability. Exeter: University of Exeter.
SHORT, J. A. and CALDER, A., 2013. Anaesthesia for Children with Special Needs, Including Autistic Spectrum Disorder. Continuing Education in Anaesthesia, Critical Care & Pain, 13(4), pp. 107-112.

If you would like more information about Greg’s work you can contact him at Cigang@edgehill.ac.uk

Talking Mat would like to wish you all a Happy Christmas

2106 has certainly been a busy year for us at Talking Mats. We have seen some staff changes saying goodbye to Jill hall and welcoming Morag Crawford. We were delighted when we brought Kirsty  onto our staff . Kirsty originally volunteered with us as part of a school transition programme for people with autism. Laura Holmes joined us as a Talking Mats external associate for the North West of England.

If you are interested in what we do and want to see our activity in numbers then have a look at the Talking Mats Year in numbers . Click on image to see the enlarge ! 

At the moment we are busy preparing for 2017 and we are looking forward to

1. The evaluation of our following projects in The New Year

• The National Involvement Network on our partnership with ARC Scotland
• Our programme of service wide training with Central London Community health

2 Continuing to work with

• Patient Opinion
• The Alliance Self-management digital project
• Colleagues in Germany

3 Launching more resources

• Keeping Safe- so far this resource has only been available to people working with people with learning disability in Scotland. We will be holding a specialist seminar about this resource in London on the 17th March so its use can extend south of the border .
• Launching our conversation sets: gardens, holidays, trips out, sports indoor, sports outdoor and football.  These were developed as part of the family training for people with dementia but they have much wider use and will be available  as additional  Talking mats sets

Plus Talking Mat is planning to go to Australia in May!

Nicki and Lois have their flights booked. Agosci here we come ! Then we are over to New Zealand to run foundation training in Christchurch and Auckland before we head back to Melbourne to run the first ever accredited training course in Australia. We will also be running a specialist seminar on Keeping Safe in Melbourne. If you want any details about the trip please get in touch.

We really appreciate all the support we get from everyone involved in Talking Mats and wish you all a happy and peaceful festive season

Exploring sibling attitudes towards participation when the younger sibling has a severe speech and language disability

We were delighted to receive this publication from a friend and colleague, Prof Juan Bornman from Pretoria in South Africa. It reports on a study carried out with 27 typically developing children who have a younger sibling with a severe speech and language disability. Juan and her colleagues used Talking Mats to carried out an adapted structured interview to find out the views of these children on four everyday life situations identified by the WHO-ICF-CY (World Health Organisation’s International Classification of Functioning, Disability and Health, Children and Youth Version).

The four topics were:
Communication
Domestic life
Interpersonal interaction and relationships
Major life areas.

The findings showed that the children were ‘most positive towards participation in play activities with their sibling with a disability. They were also positive towards participation in household tasks. They were less positive towards communication participation and least positive about participation in interpersonal relationships’.

The following example is taken from Juan’s publication.

The overall findings suggest that the attitudes of the young children in the study towards participation with their younger siblings with severe speech and language disabilities were generally positive.

The article’s reference is:
Exploring sibling attitudes towards participation when the younger sibling has a severe speech and language disability. M Hansen, M Harty, J Bornman  South African Journal of Child Health 2016 Vol. 10 No. 1

To read the full publication with details of the methods used and the results click here sibling-attitudes-2016

Delighted to introduce you to ‘The Communication Game’ : a board game for staff to improve their communication skills.

How we  listen, talk and engage with people is fundamental to the quality and effectiveness of health and social care services. Although communication underpins everything we do in a work context, it can be a difficult topic for staff to talk easily about. Add to that the possibility of service users having an additional communication support need, through reasons like stroke, learning disability or dementia, then there is much potential for things to go awry and  unfortunately, they often do. ‘Poor communication’ is cited as the most common cause of frustration in complaints about services.

The Communication Game was developed by Focus Games, NHS Education for Scotland (NES) and Talking Mats. It is a learning tool to help staff working in the health & social care sector increase their knowledge and skills around communication.  The Communication Game is fun and easy to play. It can be played with or without a facilitator, and allows staff groups to have discussions and reflect on their communication skills. It allows them the chance to learn from each other. It will improve knowledge, but more importantly enable them to think about the small steps they can make to improve their interactions.

The project grew out of two previous projects funded by NES: Making Communication Even Better and Through a Different Door. In these projects, it was recognised that the experience of services for people with a communication support need is something of a lottery. For them, there was a considerable difference in the experience of interacting with a staff member who was empathetic and able adapt to their communication, to interacting with a member of staff who was struggling and unable to adapt their interaction. Training and understanding of inclusive communication practice is key. It has been a great privilege for Talking Mats to continue to support the work of the previous 2 projects and work with Focus Games Ltd to develop The Communication Game. Support during the development process from the Stroke Association Scotland, Capability Scotland, RCSLT, Scottish Care, Communication Forum, Queen Margaret University and NHS Ayrshire & Arran SLT Department have been invaluable, and we are very grateful; also to NHS Education for Scotland for their continued input and funding.

If you are working with staff in the health and social care sector, then this will be a great resource for you. You can get The Communication Game from the Focus Games online shop. It is guaranteed to promote laughter learning, and a touch of competitive team spirit. Most importantly, it will be a catalyst to help develop staff communication, making interactions better for people with communication support needs.

You can find out more about the game at www.communicationgame.co.uk

, and follow the game on Twitter on @Comm_Game.

Get your copy at www.focusgames.com.

Many thanks to Ruth Spilman, Senior Speech and Language Therapist, for this great blog about how she uses Talking Mats for Capacity Assessments with People with ASD/LD

I am a speech and language therapist (SLT) working in a residential provision for young people with autism spectrum disorder, learning disabilities and other co-occurring difficulties. We support young people from 7 up to the age of 20. Many of the young people are in a ‘grey area’ with a view to capacity assessments, including those aged 16-18. We support many capacity assessments, including deputy-ship for finances and care, health and welfare, as well as more individualised capacity assessments around restrictions in the environment, consent to medical interventions and making decisions about the future.

A large part of the way we support these capacity assessments is by using Talking Mats, which support people with autism who generally prefer to think about things visually. The young people are encouraged to use Talking Mats in their everyday communication, such as evaluating activities, lessons and therapy sessions to develop their skills, as well as during direct Speech and Language Therapy work. If a young person has proven their competence using a Talking Mat, we can then move on to supporting capacity assessments. As part of the process, the SLT would break down the concepts needed to be understood to identify if the individual has capacity or not. For example with finances, do they know what money is? can they organise things that are expensive and cheap? can they put items in a scale of least to most expensive? This would all be done using a Talking Mat, then followed up if they achieved this task with a range of further activities. A Talking Mat can then support activities to evidence their understanding or lack of, while also giving a young person all practicable help to communicate.
See below two examples of a young person thinking about 1) money to support their finances, and 2) things that are healthy or not.

Talking mats are used for a range of different skills and assessments in the provision I work in, but their use for capacity assessment gives the young people the most practicable support with communication and allows for clear evidence of the person’s understanding of the concepts involved. In addition to the range of items mentioned above, we have have also discussed tattoos, physical intervention and behaviour support strategies, having a lock on an individual’s bedroom door, and understanding of fantasy and reality.
Talking Mats has proved to be a truly simple but brilliant and useful tool.

Ruth Spilman, Senior Speech and Language Therapist, Specialist services in education
The Cambian Group, Dorset, BH19 1PR www.cambiangroup.com

We are very grateful to Lauren Pettit and her colleagues from Pretoria, South Africa for sending us their published paper on a recent research project which used Talking Mats as a research method.

The study’s aim was to describe and compare the views of adults with aphasia, their significant others and their speech and language pathologists regarding the importance of nine life areas for the rehabilitation of adults with aphasia.

They used Talking Mats to support 15 adults with expressive aphasia to rate 9 life areas in terms of importance to them. The 9 life areas they included were Domestic Life, Relationships, Work and Education, Leisure, Self-care, Learning and Thinking, Coping, Communication and Mobility. These are taken from the World Health Organisation International Classification of Functioning Disability and Health (WHO-ICF). The researchers also obtained the ratings of 15 significant others and the 15 speech and language pathologists treating them.

They found that most life areas were rated as important to work on in rehabilitation by most participants. However, there were some discrepancies between the views of the adults with aphasia and the other 2 groups in the study and significant discrepancies were noted for 3 of the 9 life areas.

The graphs below show the comparisons of the 3 groups of participants. Click on graphs to enlarge

Fig1. People with aphasia

Fig2. Significant others

Fig3. Speech and language pathologists

The researchers suggest that ‘These life areas can provide the ‘common language’ for team members to engage in dialogue and identify problem areas related to the daily life functioning of people with expressive aphasia. By simplifying some of the labels of the activities and participation dimensions of the WHO-ICF and pairing these labels with pictures and the interactive Talking Mats interview procedure, adults with expressive aphasia (who often have difficulty participating in the selection of rehabilitation priorities) were able to express their own views. This may be a first step in assisting the adult with aphasia to advocate for themselves and to exercise their right to identify the activities and participation opportunities which they would like to access, and to set rehabilitation priorities based on their choice. While the overlap in priorities among the three groups as found in this study is encouraging, the presence of some significant differences underlines the importance of the voice of adults with aphasia themselves. This ensures truly client-centred rehabilitation that underscores the principles of human rights and a focus on competence rather than deficits’.

To link to the full article:  http://dx.doi.org/10.1080/10749357.2016.1207148aphasia

Please contact info@talkingmats if you would like to discuss using Talking Mats in research

This blog summarises a project we have completed providing Talking Mats training for families living with dementia. A key aspect of the work done by Talking Mats is to find ways to improve communication for families living with long term conditions. In particular dementia is a long term condition where deterioration in communication will eventually affect everyone. This makes it increasingly difficult to ensure that the person with dementia continues to be involved in decisions about their life.
We have completed a project funded by Health and Social Care ALLIANCE Scotland. Training in the use of Talking Mats was given to families living with dementia and staff who worked with these families. The Alliance Family Training final report highlights how this training helped people with dementia to communicate their views and be more involved in making decisions about their lives.

Families identified issues relating to self-management that they had not previously been aware of and new insights emerged as the following comments illustrate.(click on box to enlarge)

For some family members an important outcome was that Talking Mats helped them see that their spouse was satisfied with many aspects of his/her life. They found this very reassuring as many assumed that the person with dementia was frustrated and discontented.

The following is an example of how using Talking Mats helped with self-management.

When using Talking Mats on the topic of Where you live, G explained that he found it difficult to find his way to the toilet in the night. As a result his wife bought special senior night lights to help him which solved their problem. As a result, night times improved for both of them.

For further examples and information read the full report here Alliance Family Training final report  and for further information about Talking Mats Family training please contact info@talkingmats.com

Engaging with people who have difficulty communicating can take time and may result in misunderstandings which can cost a lot in terms of time and cost and emotion for all involved. Research and anecdotal evidence have both shown that using Talking Mats is efficient and cost effective in that staff or carers can get better quantity and quality of communication with the people they work in a shorter time with than with usual methods of communication. The average time for someone trained in Talking Mats to have a Talking Mats conversation is 15 minutes, although some people may choose to talk for longer.

In addition, staff often rely on relatives to gather information about a person’s needs and preferences. The process of gathering that information can be protracted owing to availability of family members and, because it is second-hand, is liable to misinterpretations. This in turn can lead to frustrations which can damage relationships, result in poor care and cost time.

At a practical level, the feedback from staff has been that the wipe clean, ready-made Talking Mats symbol sets give immediate access to a practical communication tool. Staff compared this favourably with the time taken to source images on-line, print them out, cut them up and develop them to a standard that is infection control compliant.

The Talking Mats team have invested their time and skills over several years to develop topics which are based on sound research. For example the Health and Well-being Resources is based on the World Health Organisation ICF, the Children and People’s Resource is based both on WHO-ICFCY and GIRFEC. The Eating and Drinking Resource has been co-produced with people with eating and drinking difficulties and a range of different professionals. The Talking Mats symbols have been carefully designed to represent both concrete and abstract topics

In addition sending staff on a Talking Mats training course results in a work force which is effectively trained in communicating with a wide range of people as well as having a bespoke communication tool. Using Talking Mats is efficient for organisations both in terms of time and costs.

Thanks to Alison Matthews for a great guest blog on Talking Mats supporting people with learning disability to have a political voice  In the photo from left to right Alison Matthews, John Hendrickson ( chair of NW LDA) , Shahnaz Ashraf, Rosemary Trustam, Darren Heywood (vice chair)

The North West Learning Disability Alliance (LDA) is a campaign group focussing on the rights of people with learning disabilities. The NW regional self -advocates forum met twice to identify their priority concerns which were due to be discussed at the regional conference in Blackpool. Members of the NW LDA attended a conference planning event and  we discussed ways in which people could be supported to voice their views on services. It was agreed that given the need for local and national politicians representing their citizens to hear the views of people with learning disabilities, the conference would be a way to develop this with the help of social media. The NW LDA was then invited to have a stand at the conference in Blackpool.

Talking Mats seemed the obvious approach to support discussions around the concerns as it provided a structured means of people expressing their views and provided potential objectivity in that people could also praise services, as well as voice concerns, which in fact some did! We wanted to take photographs of people with their mats as we felt it would bring the concerns or issues to life, it certainly seemed a more powerful way of enabling people to speak out. Our idea then was to e mail relevant local councillor or MP and to support people to get their voices heard wherever possible.

Some of the challenge was in planning the vocabulary needed and in finding the appropriate visual scale. The list of concerns created by the self- advocates provided an ideal starting point.  The scale we opted for consisted of symbols which enabled people to say whether they were worried about the topic or happy/not concerned. The topic itself was ‘services’. Finding symbols was a real challenge so we opted for a mixture in the end, photos, symbols, photosymbols and our own line drawings.

We spent time with the self -advocates who produced a mat, first exploring their knowledge of social media, in particular Twitter and Facebook. Many already had accounts and e mail addresses, some people came ready with topics they wanted to get off their chests or people they wanted to praise.  Everyone said whether or not they wanted to e mail their MP or local councillor with a photo of them and their mat and whether they wanted us to post the photograph of them with a mat on social media.  For Twitter we used the hashtag our voices matter (#ourvoicesmatter).

People raised concerns about a variety of issues to do with service cuts, from cuts to the NHS and the need for local pharmacies to stay open, to cuts to transport and the need for additional support with relationships. One person mentioned specifically that she wanted to feel safe at home and talked about crime directed towards people with learning disabilities. Most people were worried about benefit cuts

We had some positive responses, one person wanted to highlight how happy she feels in her new flat and one person specifically wanted to compliment his local councillor who he felt really listened to people with learning disabilities. Ivan Lewis MP tweeted his support for the campaign. In terms of learning for next year’s conference, we will develop the vocabulary and the process of collecting e mail addresses and twitter accounts for MP’s. One very valuable lesson we learned about the numbers engaged in the activity was to hold next year’s sessions before the party on the last night.  It seems the participants at the self advocates conference work hard and play hard too!

Alison Matthews is a Speech & Language Therapist, Director of Total communication Services CIC and member of the North West Learning Disability Alliance

April 2016