About Say Aphasia

 1. Why the charity exists 

The charity was set up by Colin Lyall in 2016, 2 years after he suffered a stroke, and consequently was diagnosed with aphasia. 

There are currently 350,000 people living with aphasia in the UK, yet not many people have heard of it, or understand what it is. 

Long term support for people with aphasia is hard to find. Which is why this charity is so important. Once patients leave hospital, there is little long term support apart from Say Aphasia and Speech and Language Therapy. 

 

2. Charity USP 

We are the only charity run by people with aphasia. Once you start to understand what it may be like to live with aphasia, you may understand that this is quite impressive. There are constant hurdles we need to overcome to successfully communicate with our team members with aphasia - due to aphasia being a communication disability. We try to make all our internal and external communications aphasia friendly, which is never easy as aphasia affects people so differently. 

Making our communications aphasia friendly means:

• • Making written words concise and simple for those who find it hard to read. Also processing information is made harder with aphasia. So information needs to be short, and easy to digest.
    
    
  • Adding pictures, illustrations and icons to help people understand the content.
    
    
  • We try to include voice messages for those who cannot read.
    
    
  • We try to use a mixture of ways to communicate, as aphasia affects communication in a variety of ways. And affects each person differently. 

 

3. Purpose of the groups: 

• • To bring people with aphasia or other acquired communication disability together.
     
  • To help people with aphasia to feel less isolated within their community, and feel more confident living with aphasia. 
    
    
  • To provide a safe place where aphasia is understood. 

 

4. Group Structure: 

• • Peer led by people with aphasia and supported by volunteers with and without aphasia. 
    
    
  • A supportive place for people with aphasia to rebuild on their confidence and learn ways to reconnect with the world again.

 

5. What to expect when volunteering at a group. 

• • Our groups are very welcoming. 
    
    
  • You may want to help serve drinks. 
    
    
  • Indulge in conversations with charismatic and friendly people. 
    
    
  • You may notice that you’ll need to adjust your communication style to allow people with aphasia to process what you are saying. For example you may need to:
    
    
    • Pause between sentences.
      
      
    • Use shorter sentences.
      
      
    • Draw or write things down for the person with aphasia to see.
      
      
    • Give the person with aphasia time to speak.
       
  • You may want to just chat with our members, or you may want to help set up an activity. Such as art or games.
    
    
  • You may want to help set up the room.
    
    
  • You will most likely find this role very fulfilling and make genuine connections with others.
    
    
  • Please remember that people with aphasia have not lost their intellect. 

 

6. What the group needs from our volunteers:

• • Being a volunteer involves supporting people with communication difficulties of aphasia to have a conversation – it is not therapy and more of a befriending role.
    
    
  • Our members may need our volunteers to initiate conversations, but not to dominate a conversation.
    
    
  • Our members love to laugh!
    
    
  • Patience and understanding.
    
    
  • A willingness to learn and understand the complexities and obstacles of having aphasia. 

 

7. Why we value our volunteers. 

Our volunteers are fundamental to the success of our charity. 

We have tremendous gratitude for our volunteers, as the impact every volunteer has on our support groups is life changing for our members with aphasia. Aphasia is such an underdog condition that being part of the aphasia community is extremely impactful for the lives of people with aphasia. As well as contributing to the understanding and awareness of aphasia. 

With the help of volunteers, we can work towards alleviating loneliness and isolation for people with aphasia. We can also reduce feelings of frustration by understanding how to communicate with our members with aphasia. 

  

8. How our group volunteers can help: 

• • Setting up and tidying away. 
    
    
  • Assisting with admin - We use online Google forms. 
    
    
  • Support our members with aphasia to have conversations. 
    
    
  • Assist in fundraising or aphasia awareness activities.
     
  • Assist with organising day trips. 
    
    
  • Assist our members use their phones and/or ipads.

 

9. What we request from group volunteers: 

1. 1. DBS check, 
      
      
   2. 2 references, 
      
      
   3. attend our induction training, 
      
      
   4. attend safeguarding training,
      
      
   5. sign our volunteer agreement.