Communicating with your GP

Talking with GPs about your, or your child’s, rare disorder

Looking for a new GP? One who will help manage complex issues, coordinate care, and is open to learning about you and your rare disease!

Someone with a rare disease may be a challenge for most GPs. They may never have seen a person with your specific disease before, or even heard of your rare disorder.

You can help by providing some information about not only yourself, but also your disease. You should feel comfortable with the doctor; be able to ask questions; have a sense the person is willing to work with you and your specialist(s). You also must be willing to be part of the team and communicate clearly and honestly about your condition.

You will need different kinds of doctors to help you with your rare disease. Specialists will know the most about your disease and which specific treatments are best. Many times, several specialists will be needed to help with specific parts of your disease.

Doctors who treat people with rare diseases often know other specialists around the country or world and can help you find someone near you who is a specialist in your disease. However, they are not usually the doctors who will help manage all the various parts of your care.

How can you find a GP to help care for you when you have a rare disease? It may take several visits before you feel comfortable and develop a relationship. Sometimes you may need to see more than one GP until you find the one that is best for you.

Help your GP to help you, provide him/her with information, not only about you, but also about your rare disorder. BUT you also need to keep in mind that GPs have busy clinic days and are limited in the amount of time they are able to devote to each patient.

It may be unrealistic to expect a GP to achieve the degree of in-depth knowledge about a rare disorder and the most recent research on it that you will have. The goal is not for your GP to become an expert on your specific disease (that is why you have a specialist), but to understand the problems related to the disease and be able to coordinate care with your specialist(s).

Helpful information to provide the GP may be:

  • a review article or reference about your disease or a website dedicated to your disease.
  • copies of important documents - Consider making a binder or electronic file of important information and your own summary

Ask your previous GPs and specialists for a summary letter describing your disease, your specific problems, and your current treatments. This is very valuable for the busy primary care doctor who may not have the time to go through extensive records. These will be helpful not only for your new primary care doctor, but also any new specialists you see.

Key records you should get

Get a copy of your medical records from your specialists, previous GPs, and hospitals where you were admitted

also you should get copies of the following:

  • A copy of the specialist note when you first received your diagnosis, and the note from the most recent visit with your specialist.
  • Copies of any tests that helped make the diagnosis—blood tests or tests on other body fluids (urine, spinal fluid, tissues remove for biopsies or operations), imaging (regular x-rays, CT scans, MRI scans, echocardiography, etc.), special diagnostic tests (lung function, sleep studies, psychological tests, etc.). If you have the actual image tests on a disc, that would be very helpful. You have rights to all your records (paper and images on disc) from all of your providers (including any hospital).
  • If you have had tests after your diagnosis as a regular follow up of your disease, you should get copies of those as well.
  • If you have had an operation or been admitted to the hospital, a copy of the Discharge Summary is essential. If possible, the Operative Notes for your surgeries are also useful.
  • For children, a copy of the growth chart or a list of the weight, length, and head circumference over time.
  • For children and adults, the immunization record.
  • A list of current medications and the dose, any previous medications that were discontinued because they were not effective or caused side effects, and any allergies. Include experimental treatments, vitamins, supplements, herbal therapies, physical/occupational therapy, chiropractor—essentially anything you use to make your disease better.

The GP may not need to see all of these, but you can refer to them during visits as needed.

Remember that your GP will be key to coordinating all other aspects of your health care. It may take time to find the right GP and to build an open and honest relationship. However, finding a good GP to coordinate services and provide comprehensive care will ensure that you stay healthy.

Adapted from Hypersomnia Foundation article ‘Communicating With Your New Doctor About Your (or Your Child’s) Rare Disorder’ and printed with kind permission of the original authors Bonita Fung, and Kim McBride.