Consultations
We are often approached by organisations keen to involve and hear the views in the SMA community, for example about service or research developments. You will find the latest requests we have received here, with details of how to contribute your personal views.
Current Consultations |
Working Families - barriers facing parents and carers of disabled children who want to work
Working Families has launched a survey to find out more about the barriers facing parents and carers of disabled children who want to work. Go to http://www.workingfamilies.org.uk/ to complete their survey
Public consultation on a UK rare disease plan launched on Rare Disease Day (UK wide)
The four UK governments Westminster, Scotland, Wales and Northern Ireland have jointly launched a public consultation on developing a UK plan for rare diseases. This plan should facilitate research, improve information about rare diseases, set a framework for developing centres of expertise and improve care and support for patients.
The consultation is open for anyone to comment until 25 May 2012 and is available at www.dh.gov.uk/health/2012/02/consultation-rare-diseases
Survey on Parent and/or carer wellbeing
Genetic Alliance UK have alerted us to a survey, sent to them from the University of Edinburgh. The purpose of the survey is to understand more about the process of adapting to having a child with profound and multiple disabilities and how psychologists and other professionals may be able to support this.
For Further information and details of how to take part, visit: http://www.survey.ed.ac.uk/parentcarerwellbeing
To view our Previous Consultations click here
