Finding out if you have symptoms of HD

Examples of Support

Diagnostic testing

Neurological Assessment

Emotional support and counselling

Accurate information about HD

Post-test follow up and referral on to other support services

Process and timescale for testing

Key Services and People

Clinical Genetics

HD Clinic ( HD Clinical Lead, HD Specialists, Specialist Youth Advisor, Financial Wellbeing Officer )


Neurology services

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 the local genetics service or HD Specialist Service depending on client choice. All referrals to local Dept. of Clinical Genetics can be made by any health & social care professional, most commonly GPsHD SpecialistHD Clinical Lead, PsychiatrySpecialist Youth Advisors . Clinical genetics may also accept requests for genetic counselling directly from clients from an HD family that is known to them.

Clients with symptoms suggestive of HD, and a known family history of HD, should be offered referral 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 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 them and 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.

In all scenarios the client’s capacity, ability to consent to testing and their understanding of the potential implications for their wider family must be fully considered.

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 01236 712 564 ) and talking therapy services – should be offered.

SCI Gateway should clearly identify HD Specialists as main point of contact for information and advice about HD.


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.


People with symptoms of HD who choose to pursue a diagnosis receive one promptly and they, and their families, are connected to appropriate support.

National Care Framework for Huntington's Disease