"Closure of service from 5 days to 3 days"

To whom it may concern,

I am the parent of a beautiful child who has Ehlers Danlos Syndrome and suspected POTS (postural Tachycardia Syndrome) I am one of many parents who are desperately trying to find help for our very sick children. My child often faints, gets dizzy and has a quality of life that makes it difficult for them to function day to day, at school and at home.

I was so surprised to learn that CHISM was in the midst of a reshuffle and their doors would be open now for 3 days rather then 5 leaving only 1 and half days free for POTS patients to be reviewed by specialists in the clinic.

I know for a fact that there are long waiting lists for children with POTS to come to the clinic and in-spite of this I believe there will be fewer appointments booked for these children once the new schedule is rolled out.

There is proven evidence that exercise intervention helps children with POTS. We’ve seen this with Olympian’s who have increased functionality when they incorporate the right exercise program and go on to not only function but win Gold medals at the Olympics. There is hope for these children.

Why are these children being left behind? Why are these children not being prioritised in our health system?

I understand that CHISM is the only clinic in Australia that is currently helping Children with POTS and the main referral from Westmead Cardiac clinic and many other cardiac clinics. They have nowhere else to send these children. I have documented evidence that this is the case.

A child’s life with Postural Tachycardia Syndrome can be similar to that of someone with congestive heart failure. My child is living proof of this. I believe that services should be increased not decreased for these vulnerable kids.

I wish to put in a formal complaint about this situation. I think that funding needs to be directed towards this area of the hospital urgently. I am in the process of highlighting this situation in a number of areas and it is my fervent belief that change will come.

I believe I speak for all the parents out there who are desperate to help their kids with POTS, including those who speak English as a second language and are trying to navigate the health system, those who are disadvantaged and those like myself who are going through difficult times (I’m going through treatment for breast cancer). We will continue to fight to get the medical intervention our children deserve,

Kind Regards,

mercurynp43