Practical matters

There are certain practical matters to consider if you have Huntington’s disease or are caring for someone who has it. It’s a good idea to take some time to look at these and plan ahead, so that you don’t need to worry about them further down the line, when you may be less able to deal with them.

One day it may not be possible to manage your own financial or welfare matters without help from someone else. If you like, you can appoint someone you trust to help you.

See At risk/Insurance and legal matters for more information on power of attorney and insurance matters.

Help with benefits

If you find it difficult to manage your own benefits, you can ask the relevant benefit department to let you have a named person act as your ‘appointee’. This person will then liaise with that department on your behalf.

Patients Rights

As an NHS patient in the UK, you have certain rights ranging from access to GPs to refusal to have treatment. Citizens Advice has information outlining these.

Driving

If you have a driving licence, you must tell the DVLA if you develop a ‘notifiable’ medical condition, or if your condition worsens after you get your licence. Huntington’s is a notifiable medical condition.

You do not need to tell the DVLA if you have a positive predictive test for HD but don’t have any symptoms. However, if you do have symptoms, the DVLA must be informed. It doesn’t mean that you will automatically lose your licence, but it does mean that you may need to have medical assessments to check that you are still driving safely. Decisions are usually made within six weeks. You’ll get a letter from DVLA if it’s going to take longer.

After you notify the DVLA of your condition, they might:

  • contact your doctor or consultant
  • arrange for you to be examined
  • ask you to take a driving assessment, or an eyesight or driving test

You must surrender your licence to the DVLA if your doctor tells you that you need to stop driving because of Huntington’s.

These are just some of the matters you might want to consider. Your local specialist Huntington’s Disease advisor (SHDA) will also seek to help and answer questions, and Citizen’s Advice can also provide, support, advice and advocacy.