Category Archives: Participation

Using Talking Mats to Empower People with Dementia to Actively Participate in Decision Making

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Many thanks to Mary Walsh, Health Service Executive (HSE) Senior SLT at St Mary’s Hospital, Dublin for this fantastic blog post about their project involving use of Talking Mats to support people with Dementia to participate in decision making related to their needs:

In September 2016 Aideen Lawlor (SLT Manager) and I (Senior SLT) won the Dementia Elevator award with a project entitled “Empowering Persons with Dementia to become more Active Participants in Decision Making Related to Their Present and Future Needs.” with Talking Mats being an integral part of this project. In November 2017, the prize money was used to fund my training to become an accredited Talking Mats trainer so that I could then train others in TM Foundation Course on a prioritised basis.

This project is now complete with 6 speech and language therapists (SLTs) from a variety of settings working with persons with dementia all trained in using Talking Mats. As part of their training, The SLTs used TM with patients/ residents with particular reference to the Assisted Decision Making (Capacity) Act 2015. TMs were also used to help the clinicians to get to know their patients, in care planning, in improving increased opportunities for interaction and in improving choices and decision making. In effect, we were checking it out!

All the SLTs found that when TM principles are followed, that it helped to empower people with dementia to make decisions about their care. Some of the reported findings:

  • That the pictures help maintain attention and aid comprehension.
  • That it facilitated strengths rather than a deficit model.
  • That photographed completed TM provided a pictorial record for meetings – very positive.
  • That it provided a significant catalyst for change in some instances.
  • That it helped people with dementia and responsive behaviour get needs met
  • That video recording sessions with consent greatly enhances reflective practice and may be helpful in key decision making

Dublin blog photo

The next phase is to expand the number of SLTs who can provide training in Talking Mats across the Republic of Ireland. Funding from the national SLT professional body training grant scheme has been sought for these 6 SLTs to become trainers for Talking Mats. This will result in cascading training on a priority basis, increase evidence base/ knowledge re using TM and embedding TM in variety of clinical settings with SLTs leading this practice.

Mary Walsh,

Senior speech and language therapist,

St. Mary’s Hospital,

Phoenix Park, Dublin 20,

Ireland

mary.walsh6@hse.ie

Aideen Lawlor

Speech and Language Therapy Manager

aideen.lawlor@hse.ie

If you are feeling inspired and are interested in accessing Talking Mats training, we offer Foundation Training courses throughout the UK and Ireland as well as online – take a look here for more details:

www.talkingmats.com/training

Once you have accessed Foundation Training you can apply for our Accredited Trainers course to enable you to deliver Talking Mats training to others in your area.

Supporting People with Profound & Multiple Disabilities

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Find out about the Core and Essential Service Standards for Supporting People with Profound and Multiple Learning Disabilities. and thanks to Joanna Grace for this interesting and important guest blog ,she writes;

Last week I threw used deodorant canisters at an audience of earnest professionals and was cheered for doing so. What was going on?

I run The Sensory Projects an organisation that aims to share the knowledge and creativity required to turn inexpensive items into effective sensory tools for inclusion. In all I do I am working to contribute to a future where people are understood in spite of their differences.

The empty deodorant canisters had been washed, their roller balls removed to enable me to fill them with festive scented balm – some frankincense some myrrh – with balls replaced they make wonderful massage tools enabling me to form a connection through touch and smell with persons of all abilities and to share a sensory conversation around the season.

I lobbed them at my audience to bring to life the new Core and Essential Service Standards for Supporting People with Profound and Multiple Learning Disabilities. That title might not sound exciting and the link with my improvised massage tools might not be immediately apparent but I promise you the link is there and the document is very exciting indeed.

My original dream when I set up The Sensory Projects was to write five sensory stories. That dream was a bit of a fantasy and so I had to pinch myself when it came true. The original five stories are sold to fund the writing of more and there are now twenty available on the website. The stories led to books, of which there are five in print currently and a few more in the pipeline. The stories project led to another project, which led to another, and there are four currently and a fifth due to start next year. Through the projects I have had the chance to do some remarkable things and found myself in situations I never imagined I would be in: I’ve been featured in a book given away in Lush stores globally, I’ve been interviewed on Radio 4, I’ve done a TEDx talk, I’ve even exchanged text messages with the Foo Fighters! If I continued to pinch myself when remarkable things in my life happened I would be black and blue by now.

And yet of all of these wonderful things and the many adventures I have had, by far and away the best thing I have been a part of  is the new Core and Essential Service Standards for Supporting People with Profound and Multiple Learning Disabilities.

The new Core and Essential Service Standards for Supporting People with Profound and Multiple Learning Disabilities is a document that describes what best practice care looks like when supporting people with profound and multiple learning disabilities. It is beautifully simply having just 7 standards for what best practice looks like at an organisational level and 6 standards for what it looks like at an individual level. It was written by a team of volunteers over 140 strong over an 18 month period. It represents an enormous work of effort and hope. I am humbled and proud in equal measure to be one of its four lead authors. If adopted by the inspecting agencies it would change the face of what care looks like for individuals with complex disabilities nationwide and influence care provision globally.

Even without being adopted by the inspecting bodies it is having an impact. I encourage all settings to take a look at it. If you are a great setting celebrate that you meet the standards, declare it publicly, display it on your website, tell the world – and help us to create an expectation that this is what care should look like. If you are a middling setting celebrate that you are working towards the standards, use them as a reflective tool to drive up the quality of care that you offer. And if you work in a duff setting….well, I spoke to one woman who worked in a setting where the management were thoroughly uninterested in supporting their residents with profound and multiple learning disabilities. She looked through the document, thumbing the forward by Norman Lamb and the endorsement by NHS England, she gave me a wry smile “I don’t think my boss will know this isn’t legal” she winked, “I’m just going to give it to him!” However the change comes about, we want to see these standards upheld.

Early on in the writing process we had to make a decision: were we going to describe what best practice care looked like now, or what it ought to look like. We went with what it ought to look like. This is an aspirational document. But that is not to say it is unachievable. I cannot emphasise the “ought to” strongly enough. The first standard for individuals is communication, within the explanation for this standard is the following: “Communication should be a collaborative activity, it has to be a two-way exchange; reciprocal and responsive.” That is not asking a lot. It is a shame on our society that such basic standards are aspirational at all. It should already be happening.

We launched the standards at an event called Raising the Bar last year. Raising the Bar II was held this year and looked at how far we had come since the launch. One speaker told the room full of delegates “before you seek to raise the bar you must allow family members to say where the bar is currently” and we did. Families presented about the level of care their loved ones had received and their stories were horrific to hear. The bar is currently set very very low. Standards such as two way communication are aspirational. It is so low that it should be easy to raise. Simply by being aware of what we should be doing, making others aware, and expecting to see positive change we can go some way to improving care. Raising the Bar III is due to be held at Birmingham University next year on the 25th of October.

Most importantly of all we want families and primary carers to know about the standards so that they can use them as an advocacy tool and demand that settings meet them. There is a community of practice hosted on Facebook that networks people working together to see this change come about. Please join us.

So what was the deodorant canisters thing about? Well a two way communication for someone who does not use words can begin at a sensory level. It can be me massaging your hand with a festive scent and watching for your response. To be truly two way I need to share this time with you on multiple occasions as your responses today might be indicative of something other than your opinion of this scent. They could be a pain in your stomach, a tightening of a muscle, a epileptic shudder. To truly know your response, your opinion, to truly make the communication two way I need to repeat, and to give you time, and to tune in to your response and then I need to listen to it and act upon it. If through our conversations you tell me you like one smell and dislike another then this will help me choose from the pile of toiletries you are given for Christmas which you will really enjoy. As I share these simple conversations with you over time I address another of the standards:

Standard two is about health and wellbeing and describes how staff will have an awareness of what good mental health looks like for an individual and how to support it. Smell has a particularly powerful effect on the emotions and fostering an engagement with smell is a good way of supporting someone’s mental health – regardless of their ability, disability or neurodiversity. On my Sensory Engagement for Mental Well Being training day I look at many simple sensory strategies for supporting mental health for people with complex disabilities.

A document like the standards can seem dry and impersonal, throwing things at my audience helped me to bring it to life. My whole working life, and much of my private life – I have worked for inclusion in mainstream education settings, I have taught in a school for children with severe and profound special educational needs and disabilities, I have inspected schools for their provision for children with additional needs and provided consultancy services to schools looking to improve their provision, I have family members with neurodiverse conditions and physical disabilities, I have been a registered foster carer for children with severe and profound special educational needs and disabilities and I have run The Sensory Projects – has been about working to see people be better understood, better included and better appreciated for being themselves. The Standards are the pinnacle of all of this work.

You can download the Standards for free from the PMLD link website: www.PMLDlink.org.uk by following the ‘Resources’ tab, or from my own website www.TheSensoryProjects.co.uk – again follow the Resources tab. Please print them off and share them far and wide, make sure everyone you know who is involved in the lives of people with profound and multiple learning disabilities, or has influence over their lives in anyway, knows about them. Together we will create this change.

I also warmly invite you to join us on the Community of Practice, let us know who you have shared the Standards with, it is great to hear what others are doing.

Care Opinion’s Picture Supported Stories

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Talking Mats were delighted to be involved in the launch of Care Opinion’s Picture Supported stories at the Life Changes Trust Gathering in Perth Scotland this week. We have been working with Care Opinion for the past two years to develop this feature.  This earlier Talking Mats blog describes the development process and this recent Care Opinion blog gives some examples of the feature in use.

However, in this blog,  I want to reflect on two events I went to within a short space of time; the gathering in Perth on Monday and the Royal College of Speech and Language  Therapists study day the previous thursday in Stirling . It felt to me like my two worlds colliding or maybe it was just my stars aligning ! At the RCSLT study there was a session on the public perception of Speech and Language therapy and how there is still much work to do in changing the myths that are spun and repeated about what Speech and Language therapists actually do . For as John F Kennedy said in 1962 ‘ the great enemy of truth is very often not the lie but the myth , persistent, persuasive and unrealistic ´ The  National  Allied Health Professional  children’s lead, Pauline  Beirne suggested to the study day that Care Opinion is a great web site for encouraging that sharing of stories. Then, strangely when I got back into the office there was a story waiting for me in my in box all about the positive experience of a parent involved in a Hanen programme in NHS Lanarkshire  which reinforced that very message.

We know people relate to stories, stories resonate and have impact, they are easy to remember .  Our drive in working in partnership with Care opinion was to support more people to tell their health and care stories  by increasing accessibility . It was designed with and for people with dementia   through funding from Life Changes Trust but anyone can use it and they are! It is great to see the stories coming in.

Through stories let’s celebrate the good, develop and improve practice and let’s use stories to challenge myths and educate. So use Care Opinion and try out the  picture supported stories to share your experiences , tell other people ,spread the word and the picture supported story feature  !

Supporting families involved in the criminal justice system.


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Sally Kedge, Speech and Language Therapist from Trouble Talking New Zealand shares two powerful case examples of using Talking Mats with children and families caught up in the criminal justice system.

This week it was hot in New Zealand, so I sat under a tree in a school playground in the shade with an eight-year-old girl to do a Talking Mat. I’m a speech-language therapist engaged by the child protection agency who have guardianship of her. This doesn’t happen that often in NZ but the team involved with this girl and her brother realised that as well as dissociative behaviour related to the impact of trauma due to family violence exposure, there was also significant difficulty with language acquisition for both children. The mix of a trauma history and a language disorder was resulting in significant difficulty expressing emotions and explaining what had happened when behavioural outbursts happened.
Some of my work with this child has been to help the team understand how her language profiles impacts on her life, and to develop her language skills at school via a programme she carries out with a teacher-aide and a friend. My role has also involved helping her understand her own life story and to equip her to process this, as it hasn’t been a pretty ride so far.
At a multidisciplinary planning meeting for her and her sibling recently, the team were concerned to make sure the children had accurate information about when their father was going to be released from prison. Their mother has recently been released too but no one knows where she is currently. I suggested a Talking Mat might help us to find out what she knows at the moment about her parents and how she felt about the next few months, as there are likely to be some changes happening in her world. We wanted to give her accurate information so she didn’t need to fill in the gaps herself.
Using a Talking Mat helped me establish that currently this child feels many things in life are going well. This is good progress. However, we identified a few things that she felt were not going that well at school (‘in the middle’) and I was then able to talk to her teachers about preparing for the new school year starting in February. We figured out that she is looking forward to seeing her dad but doesn’t know when she will see him or where he is going. A conversation with her Social Worker and the drug rehabilitation residence has allowed me to put together some visuals and a timetable to show what is going to happen next. Dad can have these as well as her carer and others in her team.

Another child with a similar history also did a Talking Mat with me last week. My purpose was to help the team find out how he feels his current care situation is going. A very mixed picture emerged with some concerning cards placed in ‘not going well’. I asked the boy at the end if he knew anyone who could help him with those things and he said, ‘no one’. I was able to explain that I am one of the adults who need to figure out how to make life easier for him and I would talk to some other adults and come back to see him. The photo I took of the Talking Mat allowed me to follow up with the team and I took the photo back to the boy to explore further some of the ‘not going well’ cards. At this second visit, this boy initially did not want to speak at all, but he engaged fully in looking at the photo of the Talking Mat with me.

sally kedge blog
We used a scale of 1 – 5 (how much of a problem is this for you – 1 = not much, = 5 = really really bad) on a piece of paper that he could mark with a pen to explore the ‘not going well’ items in the photo. He picked out ‘mood’, ‘people coming to his house’ and ‘learning at school’ as ‘really really bad’. We agreed that these needed to get sorted out for him to make life easier and we agreed who I could talk to about these things. Once we got that agreed and written down, he initiated some conversation about less heavy topics and started playing. I’m now following up with the team. Easier said than done, but without the Talking Mat I don’t think we would have got his views so clearly.
Our Talking Trouble Aotearoa NZ team is involved with children, young people and adults involved with care and protection, justice, mental health and behaviour agencies. We have been very excited about the wide range of opportunities that Talking Mats has provided us and the professionals we work with to explore people’s views on their own situations, their preferences, and their well-being. This year we’ve been exploring how Talking Mats might be used in our contexts:
– in sexual assault health assessments undertaken by specialised health professionals
– for Social Workers in our Youth Justice and Care and Protection Communication Projects
– When finding out about how people feel about talking and understanding in legal contexts such as courts and Family Group Conferences when we are engaged as court-appointed Communication Assistants (equivalent to ‘intermediaries’),
– and in our own speech-language therapy assessments and interventions.
The social workers, paediatricians, teachers, lawyers and others we work with have also been excited about exploring how Talking Mats can assist in these contexts. We’re looking forward to more training from the Talking Mats team next year.

sallykedge@talkingtroublenz.org

Come and hear Sally speak at our Criminal Justice Seminar on the 17th of April 2018. Contact info@talkingmats.com  for more information.

Communication Access UK –Have your say?

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Get involved in choosing a Communication Access UK Symbol , and set the standards to go with it!

In early 2017 Communication Matters[1] found out  that –

  • People with  communication  difficulties  don’t  always  get  the  support  they  need  in  the  community.
  • People would  like  a  Communication  Access  symbol  in  the  UK.  Businesses  already  use  some  symbols e.g        mobility

A small group of people  were asked to  choose  a  symbol  to  represent  Communication Access.  2  ideas  were  very  popular.     For  an  organisation  to  display  this  communication  symbol  it  will  mean  the  staff  have  been  trained  to support communication  and that the business meets certain standards

Communication Matters now want to hear from more people,  with and without  communication difficulties.

To have your say about 1) the symbol and 2) the standards to support communication  follow this link.       http://www.talkingmats.com/wp-content/uploads/2017/12/Communication-Access-UK-Symbols-and-Standards.pdf     You will find the symbol choice and a Talking Mat to decide what is important to include in the Communication Access Standards.                                                              Send your responses to Communication Matters

Email : admin@communicationmatters.org.uk

Or post :  Communication Matters, 3rd Floor, University House, University of Leeds,                                             LEEDS, LS2 9DF

 

[1] http://www.communicationmatters.org.uk/