Themes:
Speakability is a charity for people with who suffer from acquired aphasia, as a result of stroke, other illness or injury. People with aphasia find it difficult to speak, read or understand language. The charity was started 25 years ago by Diana Law (who herself suffered a stroke and could only speak 7 or 8 words), as an information service for speech and language groups who found it difficult to access advice. The charity is funded by donations, grants and receives some statutory funding, and has changed its focus in the last 4 years from an information service to a patients' organisation, working with people living with aphasia and their carers.
There are over 70 self-help groups in England and 4 in Scotland at the moment, attended by a wide range of people of all ages. Most have suffered a stroke, but others have had a brain injury or other neurological illness, and all have difficulty with writing, reading, spoken language and the ability to understand or express themselves, although in the vast majority of cases their intellect is intact.
Setting up self-help groups
The groups are set up when speech and language therapists approach Speakability and ask about the possibility of setting up self-help groups, or often volunteers set up groups themselves with advice from the charity. Where areas already have groups, it is easier to set up other groups as people often have contacts, or there is simply greater awareness of aphasia. Speakability staff set up initial meetings with the clients of therapists and their carers, and they decide whether they need external volunteers to run the groups. Often carers will emerge as volunteers to run groups. Speakability defines a carer attending a group with a partner as a non-volunteer, but if they attend the group alone, they are defined as a volunteer.
There are currently 90 volunteers at present, some with aphasia, and many of the group officers who have suffered a stroke or have had a brain injury. The majority of volunteers are women, over 40 years old, although often younger people will volunteer to gain experience in the field. Some want to become speech or language therapists or social workers, some have a general interest in aphasia and others are motivated to join groups through previous experience of the illness, or perhaps when their partner who has lived with aphasia dies. Some volunteers have become development workers for their area.
Recruitment and training
Recruitment is through direct approach, national and local media and through volunteer bureaux, but volunteers are also recruited through internal events, such as network meetings, and some speech and language events. Potential volunteers fill out application forms, must provide two references and attend an informal interview. Training is done on-the-job though one-to-one training is provided, depending on need. It is problematic to hold training days in a central place as volunteers are geographically spread and prefer to stay in their locality. Volunteers are included in lunches, staff outings at Christmas, and they also receive thank you cards for their efforts.
Paid employment and training
Working as a volunteer has led to paid employment for 3 volunteers; one volunteer with aphasia has become a member of staff; the first person with aphasia the charity has employed. Two other volunteers have become development workers. Five volunteers are now undertaking training as speech and language therapists, and one is undertaking social work training.
Ongoing work
Groups continue to receive referrals from Social Services, hospital wards and speech language therapists. They still provide an information service for other health and social care organisations. The groups are not therapy groups, but social groups and a forum for campaigning. Those who participate in groups find that talking in a friendly environment is therapeutic in itself. Groups often meet over lunch, or go for coffees, day trips etc. There is an unwritten rule in groups that each member takes a turn to speak so people do not feel that they have something to say, but the moment has passed before they have formulated the words.
Speakability also has a telephone helpline and an information service. A website chatroom is also being developed.
For further information contact:
Roz Rosenblatt
Head of Regional Development
Speakability
1 Royal Street
London SE1 7LL
Tel:020 7261 9572
