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

[lourobert]

If being agressive is spotting a potentially fatal mistake on the nursing staffs part then thankgod you were but how dare they say that you were aggressive. Could they not see what you were going through, the worry and concern.

We all know that there are times when we have to push and fight for our children but that is far from being aggressive. How about they spent 5 mins in your shoes and in was their daughter in hospital I defy them not to be 'aggressive' when they are absolutly petrified.

If I were you I would challenge this comment but you dont have to defend yourself in the slightest - like you siad you have thought carefully about time you may have been perceived as aggressive and you truely can think of a time.

Im sorry youve been left to feel like this after the stressful few weeks youve

[moondog]

I think it is fucking outrageous that he has even brought this up!
These are the people who nearly killed your child,yes?
As a salt I work with plenty of 'families from hell' but however much we wince,we know that it is part of our job to put up with this and would never dare challenge parents.

Jeezuz!!!

[TotalChaos]

. Agree with Moondog. And even if the hospital had not made these errors, staff should have more compassion for the enormous stress of the situation.

[needmorecoffee]

Not sure how to bring it up or whether to just let it be. It seems that unless you are subservient then you are seen as aggressive.
I know I can be blunt sometimes but I always say please and thankyou and when dd is in hospital we do 99% of her care.
I complained 3 times when she was there. Once I asked that a certain consltant didn't see dd (this consultant has threatened us in the past witha court order because I wouldn't allow an NG tube. Plus she is unbelievably patronising) Then I made a complaint about them trying to give dd 20 times the normal dose of one med. And finally I complained to PALS over the lack of disabled access to the parents room, lack of bath support for disabled children and stupid rules which mean the sensory room is never used.
But I put up with crappy treatment - nurse would go to fetch a bottle for hungry child and take 45 minutes. Junior doctors treating us like idiots and calling me 'mum'. Nurses forgetting the bring dd's meds (we had to go ask several times) or food (if we hadn't been there she would have starved. Being qudraplegic she can't feed herself so I imagine that like elderly patients she wouldn't have been fed). The list is endless.
I'm now going to dread if dd needs to ever go back in and will wonder who complained. Feel like taking a vow of silence but ffs, when a doc walks in and says dd is mentally disabled when she's not it would be impossible not to put them right!
Her consultant is one of the only doctors I've ever trusted so it makes me upset if he thinks we were rude and aggressive while in hospital plus he said that it could affect dd's treatment in the future. Sigh
They just want quiet parents who never question anything. Not parents who know more than most of the doctors.
Still agitated about this.

[2shoes]

(needmorecoffee are you on TTR?)

[moondog]

Need, so sorry you are going through this.
You need to enquire about advocacy and if you have the strength,make a note of complaints. Have you tried contacting social services for advice? (Children's team)

Bloody disgraceful.

[lourobert]

I feel very angry for you about this......and I fail to see how this will have an inpact on any future care that your child may receive, after all it is her they are treating and she should be the focus and her welfare should be paramount regradless of the fact that they perceived you to be 'aggressive', surely they should not influence any future care she may need.

If it were me i think I would want to discuss this with the doc, I understand though that you may be tired and just dont have the energy right now, but I ,for one, would want to out my view across as he has only heard the voices of the nursing staff (or whoever it was who made this comment about you!)

Yuo are far far more knowledgeable on yuor daughter and on IS than any of those staff Im sure as you have lived it, you know your daughter and you were 100% right to stand up and make your voice was heard

[needmorecoffee]

If I writea letter to her consulatnt can I put it here and hear what people think?

[moondog]

I'll give you feedback. No problem.

[needmorecoffee]

Righty, heres the first draft.
Dear dr X
Please could you pass on my sincere apologies to any ward member who felt that I was aggressive. I was mortified to hear this as I always try and be polite and mannerly to doctors and nurses.
Even when I had to complain about the near miss overdose I thought I was being polite.
I know I ask lots of questions and can be pushy but I never meant to be aggressive in any way and am shocked that it was interpreted that way.
It is difficult to keep asking for things when at home I would do it myself and I did feel bad having to keep asking for things like X's bed to be changed after 4 days or when X's drugs or food were forgotten. Its possible that while I just assumed they had forgotten, it was percieved as nagging, pshy and aggressive.
My worry over her medications after the near miss may also have been construed as not trusting the nurses but mistakes happen and if we didn't check then a terrible mistake would have happenend.
I want to thank you and the other doctors for answering my questions as fully as possible even when I don't always understand and so ask again to make it clear for me.
I hope that X's future care will not be affected by either this, or my complaint about the near miss.
Hopefully it will be a long time before X has to go back into hospital and that anything that comes up we can treat her at home.

How's that? Not so good at writing but want to get a balance between abject apologies and pointing out they were the ones being rude and making mistakes. I still shocked at being called aggressive. If you ever met me in RL you'd know that I try and be polite at all times, even those times when I know more than the doctors telling me some rubbish and have to pointout their mistakes. I don't think they like that.
But if we hadn't asked and asked then dd wouldn't have been fed, often the drugs were forgotten. The near miss - at first we were accused by the ward manager of lying (she was very aggressive) until the 2 nurses admitted it. Dd's bed wasn't changed for days even though we asked and it had blood and sick on it. The doctors wanted urine taken 3 times a day but we could never get anurse to take the wet nappy pads away. I think it was done once in 5 days.
But if I pointed all this out it would look aggressive and defensive. My aim to keep good relations with the consultant so he doesn't think badly of us.

[magso]

Words fail me!!! It is my understanding that all near misses should be reported and investigated to try to prevent recurrance.

[KarenThirl]

Sounds fine to me, although I'd avoid using the word 'pushy' in your sentence 'I know I ask lots of questions and can be pushy' - it doesn't sound as though you were pushy, perhaps 'forward' might be better?

You're not alone in this character assassination of parents. A few months ago I was accused in ds's school of upsetting the secretary with 'my manner' when I asked to see the school's bullying policy. I guess it must have been the offensive way that I smiled at her, shared a joke with her and a teaching assistant, said please and thank you throughout and waited respectfully in my designated place outside the office door that pissed her off. But I was told by my son's class teacher that I'd 'very much upset her' with my 'attitude' and was advised to apologise. I did, to keep the peace, but to this day I have no idea what I did or said that could have been construed as offensive.

Later I found out that there'd been an accident on school premises, where a pupil had crushed her hand on the gates to the new ball court and almost lost three fingers. They'd contracted the job to the lowest bidder and health and safety wasn't a priority. Apparently the school were a bit twitchy about parents looking at policies in case they uncovered anything untoward, which is why they weren't pleased to let me see the bullying policy. I wouldn't mind so much but I wasn't even checking up on them, just finding out if I was following correct procedure in informing them that my son was being bullied. Just goes to show, eh? Damned if you do and damned if you don't.

Hope you get some peace of mind from your letter.

[moondog]

Right...

Rule 1 Be factual
Rule 2 Avoid emotive language
Rule 3 Stick to the point
Rule 4 Don't be a victim


Therefore...

Dear Dr X.
Thank you for meeting with me on xx/xx/xx
You stated in your meeting that other staff members had described me as 'pushy' and 'aggressive'

Dd has been on this ward for x days.
A number of incidents have occured that have given our family serious cause for concern. They are as follows

• Overdose issue
  
• Bed changing issue
  
• Feeding issue
  
  In view of the above serious breaches in health and safety regulations, it will come as no surprise to you to learn that my family is under an enormous amount of stress and seriously concerned about your hospital's capacity to carry out their duty of care.It would be no exagerration to say that we are fearful for our daughter's life.
  
  If I have unintentionally caused offence in my endavours to ensue my daughter's health issues are taken seriously then I apologise.However, it will come as no surprtise to yuo that the hurt feelings of your junior staff pale into insignificance when my daughter has nearly died through your negligence.
  
  I intend to meet with my solicitor at the earliest possible opportunity to discuss this very serious matter.
  
  Yours sincerely
  
  XXXXX
  
  cc
  
  Chief Exec
  Consultant's boss
  Director of Health Trust
  MP
  
  etc etc
  
  
  
  NB Put in stuff about solicitors and MPs even if you have no intention of going ther. Believe me,they will be crapping themselves.
  
  How fucking dare they???????
  
  Likewise KRENTHIRL AND OF GREAT INTERSET TO ME AS i HAVE JUST TAKEN ON MY LOCAL eDUCATION aUTHORITY OVER THEIR ILLEGAL TRANSPORT POLICY AND WON.
  
  
  Fuckers.

[moondog]

Actually ccing is essential.
Your points are very serious and need to be taken up at a higher level.
They will be,believe me. (I work for the NHS.Honestly,I am trembling with rage on your behalf.)

[chonky]

Sheesh NMC - that's (&(&(% outrageous. I can't believe the part about being threatened with a court order regarding an NGT.

I hope you find the energy to complain, I really do.

[TotalChaos]

agree with MD about retweaking of your letter. The problems with DDs care and overdose are far more important than alleged injury to staff feelings. good luck with the letter.

[moondog]

[KatyH]

Hi NMC,

I agree with moondog, don't put yourself on the backfoot, it allows them to brush over very serious issues. I find it incredibly disheartening that the consultant raised this in a way that was so accusatory instead of perhaps exploring your side of things and asking if everything was okay. If I was in his/her position I would want to know the underlying reasons for the alleged aggresive behaviour (although I'm sure they know perfectly well!).

You should be given the opportunity to address these complaints properly and it should work both ways i.e. you get to put forward what you are unhappy about. Personally, I think they should think themselves bloody lucky that you haven't already taken your complaints about the quality of care further. In your letter you should make it clear that if you came across as aggressive then it was because of A,B,C...don't be so apologetic, it gives them a get out that they don't deserve.

I also think it is utterly appalling that you are given a vague threat that if you don't toe the line then your dd's care will be affected. Words fail me.

Wishing you the best of luck.

xx

[moondog]

I wish you would come back on this Need.
I want to know what your thoughts are.

XX

[needmorecoffee]

I'm still thibking MD. I don't want to turn this letter intoa 'he said but she said' type thing. Firstly I want dd's consulatant to think well of us. He's been great over the last 3 years and it worries me.
Secondly, I'd like to get over that we were never aggressive or rude just firm and what on earth is wrong with that? The ward was shoddy, we did 99.9% of dd's care (how they could make it worse is anyone's guess, after all, they did try and kill her).
In my head I keep writing letters and discarding them.
Hospitals are just crap nowadays. The parents do all the care and when I had to interupt a nurse to ask where the linen was so I could change the sheets she was most put out and ordered me back to the cubicle and said she would be along with clean stuff. 3 hours later I had to ask again. But is there any point complaning about that? Nothing ever changes. When I complained about lack of disabled access to the parnets room I was told it was outside budget. Can you imagine if Asian or black people couldn't get into a room?
So my aim really is to explain to the consultant that we weren't rude despite the strain we were under (we thought she would die or be left severely mentally impaired) without sounding like a 6 yo making excuses.

I just don't see the point of making complaints because it wont change anything and the hospital will label us 'nuisance' parents (probably have already) and the staff will resent us and I just don't have the emotional energy. I know its a cop-out but every hospital I've been in is crap. When my mum was in Tameside (recently awarded dirtiest hospital in the universe award) there was a lad, about 18, with CP, in a bed on the assessment unit. He kept calling for a nurse so he could be taken to the toilet because he couldn't walk. The nurse who came over saod she wasn't his named nurse so would have to wait and went back to chatting with the other nurses. This poor man ended up soiling the bed when he could no longer wait (and yes, I'd been over myself to get nurses) and was so embaressed and upset. He was left with no dignity at all. It wasn't an isolated case either. He was treated as less than human and seen as a nuisance. What happenend to caring nurses?

[needmorecoffee]

DH says not to say anything because it would make things worse with the consulatnt having to take the staff's side against us so that dd's care would be even worse.

[bullet123]

I think you do need to complain about their procedures. They could easily have harmed or killed your daughter, you were supposedly rude to them (which I don't believe you were). There's really no contest.

[AeFondKiss]

needmore, just reading through the thread awful experience for you...

I can only imagine how emotionally and physically exhausting it has been for you... but my gut instinct is that you should be able to defend yourself, esp if as you say you have already been "labelled as pushy/aggressive"... no-one should have to put up with that , you didn't do anything wrong.... if you make the points then you will feel like you are at least trying to let them know about catastrophic failings.... what if ( I know it is a big if) you do manage to stop this happening again?

I don't know anything about the advocacy thing but maybe in a few weeks you might feel up to doing something about this... and for you.

[salsmum]

When you stay in hospital with your disabled child it is the most stressful thing in the world [my daughters 18] by staying there for 3 weeks you must have been going stir-crazy I think that if the nurses know you are a care provider and stay with your child they then give the bare minimum amount of care. They have'nt enough staff and really dont know how to deal with a special needs child anyway.
I have personally assisted other less able kids with drinking etc..whos parents are not with them, scary to think how close i've been allowed to get to other peeps kids while the nurses are happy to carry on their duties if my intentions were not pure.
I think the consultant could have at least been understanding to the stress you were under. If hes known you for 3 years he will know that you are not a nasty, agressive mum and should not have even made you feel so bad.
I would ask how long hes known the peeps complaining about you???
Get some rest and then think about addressing the issue if thats your plans.
take care xj