Getting advice about having a family
Examples of Support
Advice on whether prenatal testing is right for you
Help & support when pregnant (e.g. prenatal direct mutation & exclusion testing)
Help & support when thinking about starting a family (e.g. Preimplantation Genetic Diagnosis)
Key Services and People
Local Preimplantation Genetic Diagnosis service
Clinical psychology/ neuropsychology
HD Clinics
Scottish Huntington’s Association Youth Project (SHAYP) / Specialist Youth Advisors
Integrated Multi Agency Arrangements, Referral Pathways and Resources
All referrals to local Dept. of Clinical Genetics. These can be made by GP, HD Specialist, HD Clinical Lead, Psychiatry, Specialist Youth Advisors and directly by clients.
G.P. information services, such as SCI Gateway and/or local alternative , should clearly identify HD Clinical Leads
Based on individual need clients may be seen by a number of members of the genetics team. This may include Consultant Geneticist, Genetic Counsellors, Genetic Psychologist (where available), HD Specialist and Specialist Youth Advisor.
Standards
The International Protocol for Testing should be followed unless a clinical decision has been made to follow a local alternative.
All appointments should meet the treatment time guarantee and referral standards of individual services used.
Whoever is designated as lead professional should take responsibility for coordinating the support each client requires throughout