Clients without symptoms but with a family history of HD, and who wish to consider predictive testing, should be referred to 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
& 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
/TRAKCare, 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.