Getting advice about having a family

Examples of Support

Family planning advice

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)

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

Outcomes

People living with the genetic risk of HD and their families have easy access to accurate and understandable information, receive emotional and practical support and feel supported through all family planning outcomes.

National Care Framework for Huntington's Disease