Anyone know my rights on getting a second opinion on DD and changing her hospital???

[sugarbea]

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.

[lisad123isgoingcrazy]

you are more than intitled to ask for a referal elsewhere. Its horrible we have had to do the same with DH as local hospital are terrible and tests are always going missing, they dont have his normal drugs somedays which he needs daily and the doc is very bliase about the whole thing. We asked his current specialist for a referral for second opinion, he took his sweet time but was done.
Sorry your going though such a naff time. :( hope LO is doing well

[sugarbea]

Thanks..
LO doesn't let it bother her at all, she's too busy finding things to chew on..lol But she's due further ops and treatment for life it needs to be with a competant team of surgeons and doctors (and secretarys)!!

[ilovehugs]

Hello Sugarbea

Just wanted to say hello as my daughter (3) was also born with imperforate anus with vestibular fistula. This thread is quite old but I do hope things are going better for you now.
Sadly, my daughter also suffered due to a stupid and totally voidable hospital blunder. We were told to stop dialating after her stoma reversal and then the admins kept failing to book her a post-op check up. When she became constipated they told me that was normal and told me to give her lactulose. Luckily 'mum instinct' kicked in and I thought it was more than that. I by-passed the secretary and got hold of her surgeon who saw us the next day and discovered that her new bottom had healed almost closed. If it hadn't been for me, it would have healed completely shut and I dread to think what that would of meant for her. She is doing much better now, but I do feel that she would be 'working better' if it hadn't been for this. There were a few times along the way that she has suffered uncessary pain and discomfort because of poor care, but overall I feel grateful that the NHS was there to help her.
I've never met anyone with an identical condition and so I just wanted to say hello and wish you all the best x x x