The CICS Group was set up to help families whose children are so deaf that they do not derive sufficient benefit from conventional hearing aids. The vast majority of these children will be suitable for a cochlear implant, a surgically implanted device that, with the right support, and assuming they have no other significant disabilities, will enable them to learn to listen and to develop intelligible speech.

Founded by parents whose deaf children use cochlear implants, the CICS Group was formed to help others whose children already have implants and those who are considering cochlear implantation - unilateral, simultaneous or sequential bilateral - for their child.

Professionals can give you medical, technical, and practical information as well as advice about cochlear implants, but they do not live with the children twenty-four hours a day, and cannot provide the emotional support that other parents can. In all aspects of everyday life with children who have cochlear implants, the parents are the professionals.

Members share their first-hand experience of the issues that surround life with an implanted child to provide a vital part of the pre and post implantation process - support for parents by parents.

We are also able to help professionals and students with their research by distributing questionnaires to families whose children using cochlear implants meet the required criteria. We have a membership of over 900 families and our database enables us to target suitable families for specific purposes.

Having first-hand experience of the difference that cochlear implantation can make to the lives of deaf children and their families, we were delighted to be invited to be a consultee group in NICE’s Technical Appraisal of Cochlear Implants, and to have the opportunity to contribute to the evidence used to arrive at NICE’s Guidance issued in January, 2009. For all deaf children meeting the clinical criteria the Guidance approved bilateral cochlear implantation and, where the consultant felt it would be beneficial, approved a second implant for those who already had one (at the date of the Guidance). The NICE Committee made specific reference to the effectiveness and value of input from patient support groups.

Established in 1993 and registered as a charity in May 2003, CICS is an entirely voluntary group run by parents who recognise that there is no one approach that will suit all children. The Group is independent and relies entirely on donations, grants, and fundraising efforts to cover expenses.

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