Deciding whether to have the genetic test

Examples of Support

Finding out about and telling others about HD

Living with genetic risk and testing

Getting information when required (e.g. on family life with HD, emotional wellbeing & coping skills, condition information and access to services)

Advice to help decide whether genetic testing is right for you

Predictive testing

Diagnostic testing

Key Services and People

Clinical Genetics

Clinical psychology/neuropsychology

HD Clinics

GPs

HD Clinical Lead

HD Specialists

Scottish Huntington’s Association Youth Project (SHAYP)/Specialist Youth Advisors

Integrated Multi Agency Arrangements, Referral Pathways and Resources

Clients without symptoms but with a family history of HD, and who wish to consider predictive testing, should be referred to HD Specialists or the local genetics service. All referrals to local Dept. of Clinical Genetics can be made by any health & social care professional, most commonly GP, HD Specialist, HD Clinical Lead, Psychiatry & Specialist Youth Advisors. Some clinical genetics services also accept requests for genetic counselling directly from clients who describe an HD family history.

Clients with symptoms suggestive of HD, and a known family history of HD, should be referred to the local HD multi-disciplinary team.

Clients with symptoms which could be due to HD, but with no known family history of HD, can be offered a diagnostic genetic test directly by neurology clinics. Prior to testing clients must be informed that they are being tested for a hereditary condition, and that there might be implications for their relatives if they test positive. If HD is confirmed, such clients should be referred to the HD multidisciplinary team. These teams will liaise as appropriate with a range of specialist services, including HD Specialists and Specialist Youth Advisers.

GP information services, such as SCI Gateway and/or local alternative, should clearly identify HD Clinical Leads

It must not be assumed that clients with a family history of HD choosing not to take the test, or receiving a negative result, require no further support. Access to further support and advice – such as that provided by HD Specialist, Specialist Youth Advisor, Clinical psychology/neuropsychology and talking therapy services – should be offered.

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 their testing journey.

Outcomes