Going to the Hospital
Individuals with 22q often need care from multiple medical specialties. Here is some information that will help with your next hospital visit.
From Patients Who Know: A Hospital Handbook
A group of seniors in Kingston, Ontario, has come together to share common hospital experiences, frustrations, and workarounds. With the help of University Health Network's OpenLab group, their contribution was compiled into a free handbook called From Patients Who Know: A Hospital Handbook. It has a lot of useful information and was mentioned by the Toronto Star.
Some of the topics covered include:
- What to bring
- Getting to the Emergency Department
- The Language of Hospitals
- People You'll Meet
Please download it for free and have a look.
Medical Information Cards
Many adults with 22q11.2DS have multiple health concerns and long lists of medications. Some of them also have intellectual disabilities and are therefore unable to adequately explain their health conditions. If these patients need medical help urgently, or if they encounter medical professionals who are not familiar with 22q11.2DS, they (or their family members) have a hard time providing crucial information to those who try to help.
To solve this problem, our Clinic has been offering personalized medical information cards to our patients. These are wallet-sized, laminated paper cards that show emergency contact information on one side and personal medical information on the other. We began this quality improvement project in late-2014, and have issued medical information cards to over 60 patients as of January 2019.
If you are a patient at the Dalglish Clinic and would like to receive a card, please contact our clinic at (416) 340-5145.