Suggestions for improvements of services
| N=responses | |
|---|---|
| Protocols | |
| Agreed national protocol for investigation of childhood hearing impairment | 14 |
| Liaison | |
| Joint clinics and better liaison with interested specialities | 20 |
| ENT to refer families routinely rather than only if families request referral | 2 |
| Education | |
| Better referral rate through greater awareness of clinical genetic services for such families | 6 |
| Increasing teaching about syndromic deafness to relevant groups | 3 |
| Targeting | |
| Person within clinical genetics department with specific interest/expertise | 2 |
| Communication | |
| Genetic associate with special knowledge of the deaf population and communication skills | 7 |
| Genetic counsellor for deaf (who signs) | 1 |
| ‘Tests’ | |
| Need for useful molecular tests for non-syndromal deafness, to increase the accuracy of counselling re recurrence risks and improve the options for prenatal diagnosis | 8 |
| Improved early diagnosis re cochlear implants | 1 |
| Provision for performing parental audiograms at same time as children’s ones in audiology | 1 |
| Availability of MRI scanning for the investigation of deafness | 1 |
| Counselling | |
| Consistent recurrence risks | 1 |
| Preconceptional counselling should be available | 1 |
| Patient needs | |
| Find out what families themselves want | 4 |
| Input from genetics departments to schools for hearing impaired | 4 |
| By involvement of deaf people to explain about deaf subculture | 2 |