Category Archives: Advance Care Planning

Thinking Ahead – How Talking Mats can support Difficult Conversations

chatting

Rachel Woolcomb, our Talking Mats OT Associate, shares a recent personal experience where she used Talking Mats to support a difficult conversation:

The vision of Talking Mats is to improve the lives of people with communications difficulties. I have been reflecting recently on the definition of ‘communication difficulties.’

When I first heard about, and started to use Talking Mats 10 years ago, my perception was that it was fantastic for those that could not speak but I must admit I didn’t really consider using it with people who, such as myself, could use their voice to communicate.

Over the years as my understanding has developed, and I have looked further into the use of Talking Mats as a ‘thinking tool’ I have come to a different conclusion.

I would like to suggest that at some points in our lives, each one of us is likely to experience a communication difficulty. I don’t mean that we cannot physically speak, but that we cannot express what we really want to say in words. Perhaps a topic is too difficult to talk about with someone so we don’t bother, or we are overwhelmed by the subject that we don’t really know where to start.

One such subject is that of death and dying.

We know it will happen to us all one day but to talk openly with loved ones, is for some reason, too much to comprehend, too emotive, or considered bleak.

I am very fortunate enough to have grandparents in their 90’s however the conversation about their wishes for the future goes unspoken. It is a challenge for my parents to raise the issue therefore it remains the big unknown.

This is a common problem. In 2009, The National Council for Palliative Care wanted to address this issue and set up the Dying Matters Coalition in England and Wales, to help people talk more openly about dying, death and bereavement and to make plans for the end of life.

Talking Mats have produced a set of topic cards called ‘Thinking Ahead.’ https://www.talkingmats.com/product/thinking-ahead/

These were created in consultation with Strathcarron hospice to help people with advanced illness or long term conditions to think ahead and plan for the future. The three topics in the set are: Affairs, Care and Treatment and Personal Values.

My Mum was interested in my role with Talking Mats and wanted to understand what it was all about. We had already started to talk about the challenges of having difficult conversations, especially about death, and therefore over a drink, in a relaxed coffee shop, we embarked on a journey of discovery using a Talking Mat. My Mum as the Thinker and myself as the Listener .

Rachel cafe photo

She used the Talking Mat to help her think about things she had not considered and was able to make plans about what she wanted to do next. I heard her wishes and her thoughts, on why certain things were important to her. It was a very special time, facilitated by a Talking Mat.

My challenge to you as readers of this blog is to ask yourself ‘what do I have difficulty talking about’ – A Talking Mat just might be the answer!

Another resource you might find helpful is ‘Let’s Talk about Death and Dying’ –  www.ageuk.org.uk

Rachel will be running a ‘Talking Mats as a Thinking Tool’ workshop at our Talking Mats is 21 Event is in Stirling on Thursday 15th August 2019. Dr Sally Boa from Strathcarron Hospice will also be running a ‘Talking Mats in End of Life Care’ workshop at this event. Thanks to funding from NHS Forth Valley endowment committee the event is free but you do need to book your space https://www.eventbrite.co.uk/e/talking-mats-is-21-tickets-62362171935

21st save the date

You can come to the morning only, afternoon only or come for the whole day.

If you can’t come to our event watch out for out blogs and social media celebrating the reach of Talking Mats for 21 days before the 15th of August.  Please join in with your contributions using the hashtag #TMis21. For 21 days after our event we will be having a special Birthday offer! Watch this space, more to follow …….

Talking Mats is 21

21st save the date

We are all looking forward to celebrating Talking Mats is 21 on the 15th August

The morning is aimed at people who are experienced Talking Mats practitioners and will extend thinking and Talking Mats practice. There are an interesting range of parallel sessions to choose from. Each participant will get to choose three topics to attend.

  • Talking Mats as a Thinking Tool
  • Embedding Talking Mats in Schools
  • Talking Mats in Forensic Settings
  • Talking Mats in End of Life Care
  • My experience of using Talking Mats as a parent
  • Talking Mats and Positive behaviour Support
  • Talking Mats and Supported Decision- Making
  • Empowering people with Learning Disabilities to be Talking Mats Listeners and Trainers
  • Talking Mats and Children’s Mental Health

learning_and_thinking

The afternoon is more informal and there will be an opportunity to engage with some of our partners – see how they use Talking Mats and try things out . There will be posters on the use of Talking Mats in lots of different places and for a wide range of applications.

Plus there will be lunch, cake and a few bubbles !

cake and bubbles

Thanks to funding from NHS Forth Valley endowment committee the event is free but you do need to book your space https://www.eventbrite.co.uk/e/talking-mats-is-21-tickets-62362171935

You can come to the morning only, afternoon only or come for the whole day.

If you can’t come to our event watch out for out blogs and social media celebrating the reach of Talking Mats for 21 days before the 15th of August .Please join in with your contributions using the hashtag #TMis21. For 21 days after our event we will be having a special Birthday offer! Watch this space, more to follow …….

Thinking Ahead: supporting people to plan for the future

transitions

This new resource has been developed by Strathcarron Hospice and Talking Mats to help people with advanced illness or long term conditions to think ahead and plan for the future.

It consists of a booklet and 3 topic symbol sets: Affairs; Care/treatment; Personal values

3 topics
It can be used to help people have conversations about:
• the extent to which their personal affairs are sorted;
• what they would or would not consider about future treatments and care;
• what is going well/not going well in relation to their personal values

It is widely recognised that having discussions about end of life issues can enable people to remain in control for longer and help them to identify the care and support they need and want as they approach death. In spite of this, in Scotland:

  • 74% of people have not discussed what their wishes would be if they did not have long to live
  • 79% of people don’t have any written plans for their end of life care, financial wishes or funeral plans
  • Only 35% of people have written a Will

It can sometimes be difficult for people to start conversations about planning for end of life and people this is exacerbated if people have specific difficulties communicating their thoughts and feelings because of symptoms, fatigue and emotional factors. Before initiating this type of conversation it can be helpful to check the extent of a person’s understanding of their illness and whether or not they want to talk about the future.

The importance of having conversations and making plans for end of life has been highlighted as being relevant for people in the early stages of life limiting illness as well as for those nearing the end of life. There is evidence that people who have Advance or Anticipatory Care Plans in place are more likely to receive the care that they want and treatment can be less invasive. ACP is a process rather than a one-off conversation. It is acknowledged that ACP discussions should take place in appropriate settings with sufficient time to enable to people to consider and weigh up different options. ACP should also be developed in line with peoples’ personal values and goals (Sinuff Tasnim, et al.(2015) “Improving end-of-life communication and decision making: the development of a conceptual framework and quality indicators.” Journal of pain and symptom management 49.6 2015): 1070-1080).

Perhaps we should think about planning ahead whether or not we have advanced illness or long term conditions??

Training

To get the most out of the resource we run half day advanced training courses which will include the Thinking Ahead Resource. This course will be relevant to you if you:

  •  have attended a Talking Mats foundation training and are experienced in using Talking Mats with adults
  • want to extend your use of Talking Mats and consider its role and application to advance care planning
  • want to discuss sensitive topics around end of life care

 

Please contact us at 01786 479511 if you are interested in future dates.

Talking Mats – 2 learning opportunities for February

learning

Do you want to introduce Talking Mats to people with a communication disability and autism, but know they will need support to learn it?

We are holding a 2 hour seminar on the 1st of February in Stirling to share ways of supporting people with autism to learn to use Talking Mats and express their thoughts.Twilight ASD Seminar

 

Do you want to help people think about the future and what they might want to have in place at end of life?  Talking Mats and Strathcarron Hospice have developed a powerful new resource to support these sensitive conversations and an advanced course is being held in Stirling on the 21st February   and in London 27th of March http://www.talkingmats.com/training/specialist-seminars/

3 topics

 

These opportunities are only open to people who have attended Foundation training

Advance Care Planning: Lorraine’s story

affairs_TOPIC

We are working with our colleagues at Strathcarron Hospice to develop a resource for Advance Care Planning which should be available early in 2018.

This poster illustrates how we are developing the resource:
2017 TM and Advance Care Planning

During the pilot phase our colleague Sally Boa (Head of Palliative Care Education, Research and Practice Development at Strathcarron Hospice) received the following moving story from Lorraine. We are extremely grateful to Lorraine for allowing us to publish it.

 “My name is Lorraine and I am a carer for my husband who has cancer and is a palliative care patient.

I have been involved as a volunteer with Susan at Strathcarron Hospice since February this year. This was a group formed from the community put together by volunteers to get their help and opinions of thinking ahead and to understand what a loved one wants for their future and awareness of information and services available to people caring for someone with a long term illness/palliative care, but most importantly how best to get a loved one to open up and talk about their feelings and what they want for their future and arrangements.

Personally it has been for me interesting, draining and emotional at times, but this journey I have been on has made me think and realise that these are very important issues that need to be talked about with my husband and family.

I had tried to get Gordon to talk about these things, but it was difficult to bring the subject up. He just changed the subject. I tried leaving booklets lying on the table when I was out, but if he did look at them he never mentioned it.

Thinking about death is very emotional and stressful subject to talk to someone you love about. I know how I felt with these thoughts going round in my head and it was not nice. As for our two sons they seem to have accepted the situation now, although it was difficult. We have never lied to them and tried to explain what’s going on, but finding the right words isn’t easy. Moving to acceptance instead of denial is very, very hard on everyone.

I also have been involved with trying out Communication Cards (Talking Mats) which had been designed to help people who have difficulties in communicating. I went to the Hospice where I was asked some questions that I answered using the cards. I answered using the cards under the guidance of “feelings” I was surprised to find I had more positive replies than any of the others, I feel the cards would help people show their feeling better. I was asked if Gordon would be interested in doing the same. Sally emailed me a photo of my cards/answers, and I showed it to Gordon and I took the chance and asked him and he said yes. Sally came to the house and they did the task using the cards with no input from me {I kept very quiet ha ha}. The benefit Gordon got from this was really good. He was quite surprised to find he had placed more cards on the positive side as well his thoughts and feelings and he felt good about actually seeing that in front of him.

When Sally left I thought to myself this is my chance to approach the subject but again deep down I was scared as the last thing I wanted was to upset him.

I approached the subject with Gordon…. how about we continue chatting about what he wanted for his future and arrangements etc. I put it to him he knew what I was involved with for months with Susan and Mandy and that he was always interested to hear what we were doing but the truth was I still didn’t know what he wanted, I only knew he wanted a church service and burial. We sat at the table and talked about everything, I took notes what Gordon was telling me he wanted about everything.

I am an awful one for my Diary/ Journals I recorded everything we discussed finances, lawyer, wills, his wishes, Hymns he wanted, service at the graveside,what was to be given to family etc. in fact everything we could think of is now recorded and in one place. Both our boys will be told and where to find it. Jokingly to make it a bit light hearted I said I could go first you know, so we both took the opportunity to write and record all my wishes which is listed in the same journal.

Afterwards I really don’t know how to explain it but I felt a tonne weight off my shoulders, I now know everything I need to know.

More important for me I’ll never need to discuss it again with Gordon the book will be locked away safe and we can get on with our lives.

Please try and find the right time to talk, it’s very important and it will stop a lot of stress and emotional turmoil at what would be a very sad time for all.”