Thanks to Agnes Turnpenny for her  guest blog on her research on  views of people moving form institutional care in Hungary.

There are approximately 15 thousand adults and children with learning disabilities living in large institutions in Hungary. The average size of these facilities is over 100 places, and living conditions as well as the quality of care are often very poor. The Hungarian Government adopted a strategy in 2010 to close and replace these institutions with smaller scale housing in the community. Between 2012 and 2016 six institutions closed and more than 600 people moved to new accommodation. The Mental Health Initiative of the Open Society Institute and the Hungarian Civil Liberties Union commissioned a study to analyse the experiences of the deinstitutionalisation process and as part of this research we carried out some interviews to explore the views of people moving out of the institutions.

The participants – five men and four women – came from one institution in the North East of Hungary, they all had mild learning disability and some had additional mental health issues. Originally the study intended to explore the experience of moving out but due to delays in the project this was not possible. Instead, we decided to examine the expectations of moving from an institution to a smaller home that allows more independence and personalised support. Although only one of the participants had communication difficulties – thus conventional interview methods could have been utilised – I decided to use Talking Mats in order to help participants to contrast their current situation with expectations about the future.

I selected the ‘Where you live’ topic from the Social Care package with some additional images from the ‘Leisure and Environment’ and ‘Relationship’ topics. (The English labels were covered over with a Hungarian translation as most of the participants could read). The question I asked was “How do you feel about these aspects in the institution?” and “What do you think they will be like in the new home?”. (I forgot to take a mat with us, therefore we had to lay out cards on the table.)

It emerged – unsurprisingly – from the interviews that most participants anticipated the improvement of their living conditions from the move, especially better facilities (mainly bathroom and kitchen). Some also expected other positive changes, particularly less conflict with other residents, less noise and better safety –commenting on the prevalence of theft in the institution. There were also many uncertainties; people said they were unsure about how they would get on with their new housemates, how the new support arrangements with staff would work, whether the neighbours will be welcoming etc. The photos illustrate some these issues.

Overall, Talking Mats proved to be a very useful tool in interviewing participants, who really engaged with the method. The images and the completed mats encouraged further comments and explanations on issues that participants considered important with minimum prompting. The drawings were easily recognised and appropriate in the Hungarian context without any adaptations other than the labels. Finally, I felt that the use of Talking Mats in this particular situation helped to overcome some of the power imbalance between the researcher and the participants by giving them more control when handing over the images.

We are really grateful to Agnes Turnpenny from The Tizard Centre University of Kent for sharing her experience . We really value our European work and European connections.

Talking Mats considers both health and social aspects when it is used to include people in their care planning.  Lots of interesting comments are made by course participants on the forum in our online training course.  Annemarie, who works as an agency carer visiting clients in their own homes posted her thoughts about the social model of disability

 Remembering the person behind the condition

In my experience, society is fixated on the medical model, the ‘what’s wrong’ approach. Whilst the medical model is clearly a valuable and required tool, it often leads to labels that individuals are then lumbered with, such as, ‘she has dementia’, ‘she is visually impaired’, ‘he’s deaf’ or has a ‘leaning disability’. Taking this approach overlooks the person behind the ‘condition’ and so can restrict inclusion.  One example could be an individual with dementia being unable to make everyday choices about seemingly mundane issues such as what to wear that day. Using a medical model, a carer may be aware of the clients difficulties and make choices for them, whereas using the social model approach enables the carer to see beyond the condition and fully include the client, allowing them to be part of the decision making process for themselves. A second example could be a person with a communication disorder such as Asperger’s Syndrome. Access to work could be severely restricted using a medical model as the pragmatic manifestation of this condition may well exclude a person from seeking certain types of employment. Promoting the use of a social model would ensure work colleagues understood the possible limitations of the condition and ensure adequate support networks were in place. The social model attempts to embrace a person’s difference and raises awareness within society of individual needs that will facilitate inclusion into all aspects of life.

The WHO ICF -World Health Organisation International Classification Framework of Functioning, Disability and Health (2001, 2007b) aims to merge the medical and social model, encouraging professionals to think not only of the persons health condition and resulting impairment, but the impact this has on the persons participation and activities.  It captures the full complexity of people’s lives, including environmental and social factors and can be applied over different cultures

The Talking Mats Health and Well- being resource is based on the WHO ICF and supports a person to reflect and express their view on various aspects of their lives.  Using the Health and Well being  resource supports workers to remember the person behind the condition.

The Scottish Government has granted further funding for the Keeping Safe Talking Mats training and resources.

This extension coincides with the launch of the  Keeping Safe report 2013-2016   at a seminar on Thursday 19^th May at the Raploch Community Centre Stirling.  It’s great to hold our event during Learning Disability week where the theme is Celebrating Success.  This project has undoubtedly been a success.  234 Keeping Safe communication resources are in use across Scotland. Staff who have used the Keeping Safe resource report that it supports Safeguarding and  helps  people think how their life is going,  enabling them to express concerns they might  have,  either big or small.    The impact that the resource has on the lives of people with learning disability is powerful.  You can read more about this in our previous blog or in the  Keeping Safe report 2013-2016

The seminar on the 19^th of May is an opportunity to share experiences and explore further some of the issues that exist for people with learning disabilities.

The next tranche of funding provides more training courses for:

1. People who work with adults with learning disabilities in Scotland to learn the skills and use the resource to support listening to their service users and
2. The staff who use the resource regularly to become Keeping Safe trainers and support the aim of ensuring adults with a learning disability in Scotland have access to this communication tool.  We particularly want to target geographical areas that do not yet have Keeping Safe trainers, e.g. Dumfries and Galloway and Aberdeenshire.

If you work with adults with learning disabilities in Scotland and would like to apply for Keeping Safe training please contact the office info@talkingmats.com  Application for

Striling course  19th August and 16th September is here;  20160610 training flier

Aberdeen Course 9th September and 7th of October is here 20160909 Aberdeen flier

Dumfries and Galloway course 20th October and 25th November is here 20161027 training flier

Further courses are being planned in the Autumn in Dumfries and Central Belt .Please contact  Info@talkingmats.com if you wish to be sent the relevant  flyer

It is important that we ask people with learning disability about their lives and enable them to raise any concerns. Over the past couple of years we have been developing a Talking Mat called Keeping Safe.  It is a resource that gives people time to think about various aspects of their lives, and express how it is going for them.

234 staff in different parts of Scotland now have the resource and have been trained to use it. Feedback includes that using the Keeping  Safe resource can improve the quality of communication for both the person with a learning disability and the staff member in the following ways :

• Staff frequently commented that using the Mats revealed things they had not known previously;

‘It gave so much information which we did not expect. It will assist in Adult Support and Protection feedback. It gave him his own say in things.’

‘allowed needs to be identified that I would not have thought to ask about,  such as the smoking and taking drugs.’

• It enabled staff have a conversation about more sensitive and or difficult issues;

‘Usually when she expresses her feelings she can get either upset or angry. She did not get upset or angry at any point through doing the Talking Mats, although the subject and things she was saying was at times difficult issues.’

‘A has good communication skills but as we had a sensitive issue (personal care) to discuss I felt that a talking mat would allow us to explore this.’

• It also helped the thinker ( the thinker is the person doing the mat ) to express their thoughts clearly

‘allowed this person to disclose things that they were struggling to disclose verbally.’

• It helped with memory difficulties and kept the thinker focused on the topic

‘It  helps with memory and attention as she has something visual to keep her focused.’

• The information gained reflected the thinker’s view and not the views of those around them

 ‘This resource gave this gentleman the power to say exactly what he was thinking and not what he thought someone wanted to hear.’

• There was a lot of positive feedback on using the resource from people with learning disabilities

‘I adore this. The mats really helped me speak about my feelings.’

• It was a quick way to get information. Initially many staff thought using the resource would take too much time but in fact were surprised to find how much information they got in a short space of time.

The stories gathered from using the resource are powerful and a final report is being prepared which will be launched at a seminar  on the 19^th May during learning disability week . There are still some spaces on the seminar so if you would like to attend please contact info@talkingmats.com .

We are delighted that the Scottish Government is funding a further round of Keeping Safe Talking Mats training.  If you work with adults with learning disability in Scotland, and would like to apply to a Keeping Safe Talking Mats  training course then please email us for dates and the application form.

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

What are the top 10 blogs for using Talking Mats with adults? Over the years we have posted lots of blogs on different aspects of our framework . If you are working with adults with communication disability these blogs maybe particularly helpful

1. Where is the best place to start using the Talking Mats health and well-being resource? 
2. A blog from Denmark which highlights the effectiveness of using Talking Mats with people with dementia
3. Goal setting with a woman with Multiple sclerosis  
4. Using the  app with someone with aphasia 
5. The development of a resource to help people with learning disability raise concerns 
6. How can Talking Mats support Capacity to make decisions
7.  Involving  people in their decisions about eating and drinking 
8. Thoughts on using Talking Mats with people with dementia to explore mealtimes 
9. Using Talking Mats with someone with a learning disability and dementia
10. Use  in a rehab setting in South Africa 

If you want to explore our  resource and training more  please visit our shop

The transition from children’s to adult health services for young people with exceptional needs and their families is complex, multifaceted and fraught with concerns and fears. CEN Scotland commissioned Talking Mats to carry out a study to collect the views of 10 young people and their families who are experiencing this transition in Scotland.

The families in the project have given us clear views about their problems and fears and also some thoughtful suggestions for what could be made better. It is often in making small changes that significant improvement can occur. These suggestions include:

• Courses for parents on transition
• More specialist nurses e.g. transition nurses, acute liaison learning disability nurses
• Start preparing early – at least 2 years
• Transition wards for young people
• Training for doctors and nurses about complex needs
• More respite, not less
• Emotional support for parents
• Longer appointment times
• A hotline to GPs

This study captures the complexity and variation of transition health services for young people with complex health needs from the perspective of both the young person and their parents. Despite the problems and fears we also saw evidence of good practice and suggestions, such as those above, which give hope for the way ahead.

To read the full report, including a moving case study, and direct comments from families, please click here CEN Transition Report

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The Keeping Safe Talking Mats resource is a visual framework that has been developed and trialled over 3 years. It provides:

• A listening space for people with learning disability to raise concerns
• A structure for staff to find out what people are thinking about their lives, and raise issues that can be difficult to discuss.

We have produced a poster that describes the development of the resource and where we have got to .  Please click here to view CM poster 20150825

The Scottish government learning disability strategy keys to life has 4 strategic outcomes for  people with learning disability in 2015-2017

1. A health life
2. Choice and control
3. Independence
4. Active Citzenship

Using the Keeping safe resource allows people to  think about , reflect on and have their say in these areas. We have loved training staff working in learning disability across Scotland to use it. The feedback on how it is being used is  very powerful, so watch  out for more blogs that will show how it has helped people with a learning disability  have a say in changing and determining their lives.

Sophie Mitchell SLT describes how she supported her students to develop their EHC Plans with the Talking Mats app .

In September 2014 our  team and I were asked to facilitate the production of Education and Health Care plans for the Year 14 students at the Secondary Special School (for adolescents with complex, profound and multiple learning difficulties) where we  are based. As Speech and Language therapists we were asked to work with the students to gain their view on what they would like to be detailed in their plan and also what their aspirations were for their future. We wanted to ensure the production of these plans were as client centred as possible so therefore decided to use the Talking Mats App on the Ipad using the Health and Wellbeing resource.  This resource proved invaluable when working with our students. Not only were our students highly motivated to participate in the sessions due to the Ipad being used, talking mats empowered them to make meaningful decisions about their future, communicate any areas where they would like further support and discuss likes and dislikes. The impact on our students became clear when working with one 19 year old student. Although he did not have any spontaneous expressive language and would only echo things said by others, during a Talking Mats sessions when talking about his likes and dislikes, he appeared to be placing most items under ‘dislike’.  As the session went on the student started to appear agitated, then started pointing towards ‘like’ although no symbol was presented. Suddenly the student said ‘Garden’, still pointing towards the ‘like’. When presented with a gardening symbol he soon placed this under ‘like’. This information was then presented in his plan and his college were instructed to explore opportunities for this student to develop his gardening skills. For all students this information was then used to not only create their Education and Health Care plan but also expand and explore areas they were highly motivated by while still at School and also identify possible work placements for the future.  Furthermore the School invested in Talking mats training to ensure this approach is used throughout each academic year and school staff are skilled to use Talking Mats as each student starts their assessment for their Education and Health Care plan.

We would like to thank Sophie who is from Sandwell and West Birmingham NHS trust  for such a great example of how to use the app in EHC Planning . If you are interested in purchasing the digital Talking Mat then please phone the office 01786479511. We are just changing the purchasing model from subscription to one off sale so its temporarily removed from the web site.

At the end of a recent training session, we asked the trainees to tell us how they planned to use Talking Mats as part of their work. Their comments were as follows:

• This tool will be useful in helping some residents make decisions, informed choices and express their needs. It will take time for some residents to feel confident in using this tool.
• I’d like to use it with some residents to be able to adapt Talking Mats more to their understanding.
• I’d like to use this tool for resident’s reviews to find out what the residents likes/dislikes are.
• Talking Mats will be great for service evaluation.
• Talking Mats will be great for asking residents about things they want to do.
• Updating Care Plans regularly from outcomes of Talking Mats.
• It can be used to get to know people’s needs and wishes more.
• Share the findings with colleagues and joint services.
• Hopefully through its use I’ll learn to pass it onto others.
• A gardening set. Service evaluation and well-being assessing stress levels/anxiety/emotional state?
• I’d use it to promote choices of activities.
• Care Inspectorate forms. Finding out how people enjoy time at the service and how to improve on it.

Can you let us know how you use Talking Mats as part of your work?