Say Aphasia is a Brighton-based charity currently offering drop-in groups across England and Wales. It is the only aphasia charity set up by people with aphasia for people with aphasia, helping them to adapt to their new way of life and regain their independence and confidence. The charity was founded just over seven years ago when the founder, Colin Lyall, had a stroke at 50. His experience as he tried to come to terms with what had happened was confusion, isolation and frustration.
What is Aphasia?
Aphasia occurs as a result of an injury to the brain such as a stroke. It affects access to language, resulting in difficulties following conversations, speaking, reading and writing. People’s language can be affected to different degrees so not everyone’s aphasia looks the same but imagine for a moment not being able to order a coffee or ask for a bus ticket. For everyone who has aphasia, it is lifelong and means that the person living with aphasia, their friends and family will need to adjust to a new way of communicating. Aphasia frequently results in loss of employment and a reduced social network, leading to isolation for the person living with aphasia. Aphasia is not uncommon, affecting in excess of 350,000 people in the UK, however, the majority of the population have never heard of it. It can be caused by a stroke but also by a brain injury, brain haemorrhage or brain tumour.
The Say Aphasia mission
The Say Aphasia’s mission is threefold:
- To directly improve the lives of people living with aphasia by supporting them to help each other through safe, supportive and accessible peer-led services.
- To raise awareness of aphasia throughout the wider community.
- To support the wider community to make the world an accessible place for people living with aphasia.
Say Aphasia now has 15 peer-led support groups across the UK offering a welcoming, safe space to be with others who understand. In particular, in Sussex, they have groups in Burgess Hill, Chichester, Crawley, Eastbourne, Hove, Selsey, Woodingdean and Worthing. All of the peer leaders for the drop-in groups are living with aphasia. This approach really challenged their thinking as an organisation because they had to consider how to adapt all their processes, and all forms of communication used by the peer leaders, and this is something that is still constantly evolving.
Fancy a half?
A half marathon that is. Despite the fact that aphasia affects so many people, there is still a lot of work to be done in terms of raising public awareness and understanding. And of course, as a charity, Say Aphasia needs to raise money to help them help others. So they are looking for people to run the Brighton Half Marathon this February. Sussex Exclusive has signed up, so hopefully see you there!
If you are interested please contact sarah@sayaphasia.org or visit www.sayaphasia.org
