Speechmag

Contact a Family Directory lists information on 430 disabilities and health conditions

I still remember the first time I heard about autism, when a parent came to talk to our Guide Company over 30 years ago. As a new graduate, I read up on Neurofibromatosis, which affected one of my young clients. A few years later I learned about Fragile X Syndrome and the Fragile X Society through a very dedicated parent whose son is now a young adult. 

If you work with disabled children and their families, you will come across many who already have a diagnosis, or who are going through an assessment process where a diagnosis may help those around the child understand their needs. Some you may have heard of - awareness of CHARGE syndrome, for example, is growing. But others, such as Dravet Syndrome or Wolfram Syndrome, may be completely new. Contact a Family added these recently to their Directory. This lists physical symptoms, psychological and behavioural characteristics for 430 disabilities and health conditions, along with details of relevant UK support groups.

Chief Executive Srabani Sen says, "Families really appreciate it when speech and language therapists find out about their child's condition. It helps them feel more understood and less isolated. Research shows that parents of disabled children who enjoy positive relationships with the professionals involved in their children's care often cite them as important sources of emotional and practical support."

The Contact a Family Directory is available online (£17.25 per year) and in print (£40), tel. 020 7608 8700.

Better Communication Research Programme needs input from practising therapists

What interventions do you offer children with speech, language and communication needs, and what outcomes are you looking for?

The Better Communication Research Programme team is looking for speech and language therapists to respond to a survey about practice. The closing date is 17 December 2010.

This research programme was set up by the government as part of its response to the 2008 Bercow Review of provision for children and young people with speech, language and communication needs. The team, which includes Professor Sue Roulstone and Yvonne Wren, wants to make sure that its research takes account of everyday practice, and that it will ultimately be useful to practitioners, commissioners, policy makers and parents.

It therefore intends to use the survey responses, together with the findings of a systematic literature review, to develop a database of the evidence for specific interventions and the outcomes which can be expected from them. The researchers want to capture different factors that influence effectiveness and efficiency. These include where the intervention takes place, the content of the intervention, the people and resources involved and whether it is offered via a direct or indirect method.

The researchers say the survey should take between 10 and 20 minutes to complete, and that all responses are in confidence and anonymous. Click here to complete the survey.

Speech and language therapists and teachers of the deaf - 'Communicating clearly together'

Reader Sue Hamrouge gave me a call to ask if I would alert readers to a forthcoming conference to promote collaborative working between speech and language therapists who work with deaf people, and teachers of the deaf.

The conference is on 13th March in Wandsworth from 9.30-16.15. As the title 'Communicating clearly together' suggests, the programme is weighted towards presentations on joint working, including visits, assessment and target setting.

Although relationships between the two professions have not always been easy, Sue says "there is some excellent work going on now." She explains that initiatives such as the Newborn Hearing Screening Programme and the Early Support programme have brought the whole team of people who work with deaf children and their families closer together. Teams are quality audited every 12 to 18 months for the service they deliver following a diagnosis. This has led to sharing rather than duplication, and the good clinical practice is emerging as people work and develop resources together. Good news indeed for our tiniest clients and their families.