Hi, i'll try and make this as short as I can. (just read through...its very long but please help if you can)
DD was born with a rare health condition.Imperforate anus with vestibular fistula.
She has a consultant sugeon, had major surgery twice and minor surgery under anasthetic 6 times in 10 months..(she is 10 months old)
After requesting dds hospital notes to help with a DLA appeal I learned that the reason she needed the second major op was because they f**ked up the first one. I have that in writing she had post operative trauma that couldn't be fixed so they had to do the whole thing again. I was told by the consultant at the time they were not sure how the complication occured.
DD was due in for 9th (i think) op a month ago and was cancelled..It happens. Consultant has now gone on holiday for 3 weeks which i just found out by caling the secretary (who wasn't there) because no one had contacted me to re book.
As dds condition is so rare when the major complication arrose I just let them do what they had to to fix it. But I am devistated that it was the hospitals fault and can considerably reduce dds chances of being continent..Due to her condition there was already a risk of that.
My main issue is that through those 8 opperations i have had to spend a whole week before chasing the secretary who works 3 days a week and can't cope with the work load to arrange admission..EVERY TIME... The second major op t fix the complication i had to chase up for 2 months TMI by this time she was pooing out of her vagina due to the trauma..I made a complaint about the secretary not passing my messages on and not returning phone calls yet nothing has changed. I had every faith in the consultant at the beggining but he has never been available apart from at the surgery where i see him for 5 minutes to explain what is happening to my baby. All the information i have found about dds rare condition has been on mumsnet and the internet. It's like they don't care.. She's just a hospital number.
The only person that ever sat me down and gave me realistic information was the senior registra who is no longer her doctor..
I am seeing my gp on friday to ask for a referral to great ormond st where i already know they have professionals that are specialists in conditions like my daughters.
But I don't know if i have the right to demand a particular hospital or are there procedures i have to go through to change her care.
If you have read this far thank you so much..
Any help is appreciated.