Information on this page is provided by Ms Georgina Hall, Principal Genetic Counsellor at Manchester Eye Hospital.
Genetic counsellors mostly work in regional genetic centres across the UK. They are trained in genetics and counselling, some are nurses and some have an MSc in genetic counselling. There is a professional register for genetic counsellors (http://www.gcrb.org.uk/), and genetic counsellors must demonstrate their knowledge and competencies to be part of the register. They must also maintain their skills and up to date knowledge around genetics.
Genetic counsellors use their knowledge and counselling skills to help individuals and families:
- Understand the nature of the condition in the family
- Understand about genes and the way genes might be passed down in a family
- Explain who in a family might be at risk of developing a genetic condition
- Discuss genetic testing
- Help families make decisions
- Provide support
- Help families communicate about the genetic condition
- Help people find other sources of information and support
- Support adjustment to a condition in the family
The genetic counselling services for families with RP and other inherited eye conditions vary across the country. Some genetic centres have specialist genetic eye clinics with a multidisciplinary team with ophthalmologists, genetics doctors and genetic counsellors. In other areas, genetic counsellors can be seen within the regional genetics unit.
How to be Referred
Ask your GP or ophthalmologist to refer you for genetic counselling. Although these services are regional, some services have outreach clinics and you may be able to see a genetic counsellor without travelling to the regional genetics unit.