Table 2

Suggestions for improvements of services

Agreed national protocol for investigation of childhood hearing impairment14
Joint clinics and better liaison with interested specialities20
ENT to refer families routinely rather than only if families request referral2
Better referral rate through greater awareness of clinical genetic services for such families6
Increasing teaching about syndromic deafness to relevant groups3
Person within clinical genetics department with specific interest/expertise2
Genetic associate with special knowledge of the deaf population and communication skills7
Genetic counsellor for deaf (who signs)1
Need for useful molecular tests for non-syndromal deafness, to increase the accuracy of counselling re recurrence risks and improve the options for prenatal diagnosis8
Improved early diagnosis re cochlear implants1
Provision for performing parental audiograms at same time as children’s ones in audiology1
Availability of MRI scanning for the investigation of deafness1
Consistent recurrence risks1
Preconceptional counselling should be available1
Patient needs
Find out what families themselves want4
Input from genetics departments to schools for hearing impaired4
By involvement of deaf people to explain about deaf subculture2