Being a good parent

[needmorecoffee]

Justbeen to see dd's consultant and at the end he told us that there had been 'complaints' about us on the ward dd has just spent 3 weeks on. He didn't really say what but said 'some poeple' thought we were aggressive.
Now, I do my best to be polite at all times so I'm a bit perplexed. But now I wonder if asking questions and having to ask for things because they've been forgotten (for the zillionth time) is what is termed 'nuisance' or 'aggressive'? But if we sat there all meek and quiet then the times the nurses forgot the meds or forgot to feed dd or tried to give her 20 times the normal dose would have passed unquestioned!
I hate thinking the consultant thought we were awful but I've gone over every conversation I can recall and I always do my best to be polite.
I know I can be pushy but if I wasn't dd's infantile spasms would have gone on longer, this EEG wouldn't have been done so we wouldn't have cured her possible lennox-gastaut. She wouldn't have had any physio/OT/SALT.
But I'm pretty upset at the comments now and worried they'll treat dd badly next time she's in but if I never say anything then harm could come to dd.
Anyone got any advice?
Feeling tearful. I am so fed up with having to deal with medical/social services/respite people that NT people never have to deal with daily. I want a normal quite life

Need,I respect the fact that you are under an enormous amount of strain but it is possible to make valid points calmly and objectively. Letters are so much more effective in this way than conversation as you stay with your train of thought.

You have recognised that there are some VERY serious issues here. If you shut up about them, they may happen again to someone else. How would that make you feel?

You are not beholden to anyone.It is your child's right to be treated decently and safely. This has not happened.

This is the UK not some South American hellhole.

You have been treated appallingly.

Take some more time to think,but jot down the salient points while they are fresh in your mind.

Very best of luck to you.
I would urge you to contact an organisation such as Mencap (not sure what SN your daughter has apart from CP )but believe me,neglect of people with SN is a huge issue at present.Mencap have just commisioned a report on the death of five adults/young people under NHS care and it has caused huge ripples. Various recommendations have been made.
I will send you a copy if you like.It's hot off the press.
Let me know.

I also work for NHS - I agree wholeheartedly with what Moondog has said. It needs to be in writing, you need to include the list of cc's. There is sloppy practice going on in many areas, its particularly distressing when those involved can't complain themselves, ie have SN, or are elderly. Good luck with this, it sounds like a dreadful experience for you. My DD3 was an inpatient in the summer - the staff were great, but I, like you, questioned everything, and pointed out if things needed to be done differently. It is your right to do so, and it is your right to complain.

Actually,I don't even like the word 'complain' which suggests petty ill founded whingeing.

See it as pointed out serious H&S breaches that could have killed/harmed your child and if not addressed,may kill/harm another child.

I know what you mean Moondog. But the word "complaint", in an institutional context, then means that the letter has to be listened to and followed up following policies set out for the hospital. Like you I'm angry that nursing staff feel its appropriate to label a mother as "aggressive", when she's putting her child first. They should actually be feeling, "there but for the grace of...." IYSWIM

Yes,Head.I agree.
No other appropriate term.
It just has nasty connotations deosn't it?

I've found that if you stand up for your children with doctors/teachers then you are labelled aggressive and a total nuisance.
Even if you remain totally polite and firm. They all hate it.
And then they take it out of your child.

No they don't need.
That is NOT true.
I have never ever seen anyone take anyone take anything like this out on a child,even if they despise the parents.
Not in 12 years of practice with 100s of people.
So sorry you feel like this.

When my kids were in school, I took the middle one out to home educate him because he was being bullied and despite numerous trips to the school, nothing was done. Suddenly I wasn't welcome at the PTA and my other two were given a hard time by their teachers and we were blanked by teachers. It was most unpleasant. So I took the other two out as well.
You're obviously professional MD, but many poeple aren't, sadly enough.
The fact that a consulatnt would suggest that my daughters care would be affected by what the nurses thought of us is telling in itself and very scary. He was threatening in any way, just said he knows how wards operate.

Really really worried about you.
You need impartial support and advice.