Pamela Bird

Lived Experience member

Pamela lives in Tasmania, and is the mother to a daughter with Narcolepsy.

Have you ever had to watch a love one struggle with a condition that we knew existed, but had no understanding of the ramifications? This has been our life for the last five plus years, living with a child diagnosed with Narcolepsy.

We deal daily with a system that agrees that if our child had cancer or diabetes, we would have better access to medical care, medication and information. Our Narcolepsy experience has covered a range of issues, from misdiagnosis, to inadequate medications, including all the side effects, to a lack of specialist care in our home state, and access to medications due to state policy.

A once vibrant, energetic child with a bright future, has been reduced to someone who could not successfully finish Year 12, who is unable to work full-time and who has to decide how to use the available energy she has, to do the things she needs to do, to try to be independent.

In 2019 I appeared before the Senate Inquiry into sleep health, with the hope that we could orchestrate change.  I believe that the push for change must come from those that have the energy to do so. It is my belief that patients and carers are equally in need of better information, medication, care and access to help. Currently Narcolepsy is not diagnosed as a disability and therefore sufferer's cannot access social services. This is my time, to use my voice and my energy to help change become reality.