Establishing a positive working relationship is critical
For many patients, properly diagnosing GSID is an arduous journey. With varied health issues and complicated symptoms, it may take months or years to get a correct diagnosis. The time before diagnosis can become a very frustrating experience, one that can leave the GSID patient feeling extremely deflated. At times, the patient may feel that the healthcare providers do not believe them, are not listening to them, or question their symptoms and the severity of the symptoms. However, once a patient receives the GSID diagnosis, a positive breakthrough occurs. Now a working relationship that benefits both patient and healthcare provider proliferates. The patient may begin to experience positive health results as the healthcare provider administers a protocol for the patients well being and long term health. This relationship between patients, caregivers and healthcare providers (physicians, nurses and registered dietitians) is built upon a commonality of trust, respect, and cooperation. Below are helpful tips to communicate more effectively with your healthcare provider.
Trust Your Instincts and Judgment
As a parent/caregiver, you have first-hand knowledge of your child’s medical history, routine, development, strengths, and weaknesses. As a patient, you know when something is working for you, and when it is not. It is important to convey this knowledge to your team of healthcare providers. Your input will be an invaluable tool in helping to properly treat GSID. Your healthcare providers are there to answer questions, and offer input and suggestions. Do not be intimidated by their medical knowledge, they are there to help. Ask many questions so that you are highly informed about GSID. Remember that in time, you will become the GSID expert in your child’s care, or your own care.
Seek Out Information
Because GSID is a rare disorder, there is not an abundance of information available. It is vital that as the patient or parent/caregiver, you study all the information possible to make the best medical decisions for yourself or your child. In addition to meeting with medical specialists, it is important to seek other sources of information from medical journals, online searches, medical pamphlets, and patient support groups. Be sure to confirm the credibility of this information with your physician. Having an understanding of the terminology associated with GSID will also enable you to discuss the diagnosis and protocol with your healthcare providers.
Maintain a GSID Medical File
Having one specific area to store medical information will help organize your GSID paraphernalia. Patients and parents/caregivers have found that a 3-ring binder divided into sections that include primary care and medical specialists’ receipts, contact information, diet information, food composition tables, food logs or diaries, medication information, school information, and articles works most effectively. Be sure to request and file records of any procedures, labs, tests, and pathology reports, as well as physicians’ reports or clinic notes. Make your own notes on diet, medication issues, or any other questions you would like to discuss at your next appointment. Having all this information readily available in one spot will help you to always be prepared and informed on GSID issues.
Ask Your Healthcare Provider for a Written Care Plan
It can be very difficult to concentrate and digest all of the information given while at an office visit. Being prepared ahead of time can eliminate many uncertainties.To ensure that you will not forget something at an appointment, come prepared with written questions or concerns that your healthcare provider can address. Request a written care plan or report to better understand the healthcare professional’s instructions.
Change Healthcare Providers if Necessary
Feeling comfortable with a team of healthcare providers is of paramount importance when dealing with a GSID patient. If a healthcare provider’s communication style does not work well with your own, it may be time to search for a new physician or registered dietitian (RD) that better fits your needs. In the best interest of you or your child’s care, working with a healthcare provider that you feel comfortable with and trust is necessary. You may need to search for a team of healthcare providers who are willing to work with you and/or your child in an environment that makes you feel comfortable. This will ensure the best outcome for you and your child.