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dd in hospital need help. re treatment possible complaint. what to do - help us please!

241 replies

hospitalworry · 14/04/2015 20:56

i will try and give everything i can here - so it will be long
dd home from uni last week. fine happy etc. planning to go back friday. its not far (1- hour public transport) so just assumed she'd gone back when i got home from work friday as she has a p/t job in a club and i know she was working friday. anyway. sunday rolls round and i think -i will go in her room and see what a tip it may be. (door had been shut). see her on the bed. obviously not okay. she is diabetic and i thought it was something called DKA which is serious and needs taking to hospital which i did. she showed signs that it may have been dka - which were - severe confusion/incoherence, urine on the floor - obviously wet herself, couldnt find her blood testing kit so erred on the side of caution and took her in.

when at a and e , they admitted her. she was BORDERLINE dka - for those who are in the know blood ph was 7.35 and bm 19. however most concerning for ME was her inability to communicate.

anyway - ends up on hdu (high dependency unit) on sliding scale (insulin stuff etc to sort diabetes stuff out) and drip and catheterised - what i would expect.

monday morning i go in prior to work early.
miles miles brighter and apparently her bm is now down to 13. although this is where it is very very apparent she CANT talk - literally. and although seems to understand me (to an extent) difficulty responding . i tell staff this and get told she is probably in pain and doesnt want to talk (although with a 1 staff to 2 patients ratio on this ward i really shouldnt have had to tell them and this sounds like BS)
husband sees her lunchtime - he sees how bad she is too and he raises it with staff - they say - has she got psychological problems, and maybe she is an elective mute! NO
that evening I go in and see her and she is million times brighter but she still cant talk - again raise it with staff - told she is quiet and doesnt want to - i say no actually i think there is something wrong. when given her meal - she can use her fork in her left hand but no fine motor skills in right - told they hadnt noticed (forgetting - i asked at breakfast - had they considered that she might have had a stroke - was told they she had been assessed and nothing facial to indicate a stroke and reflexes fine, and if it was a tia then it wouldnt show on a ct scan so no point. she had a small fit that i called the nurse and she saw the end of it.

told that the neuro centre staff from a local unit visit our hospital on a tuesday and she MAY be referred depending on what the consultant thought.

today(no change in her)
met with consultant who (along with the other input we had had) gave the impression that it was her wanting to not speak.
he said that if it was neurological and she was unable to speak she would be more distressed . (she smiles and nods a lot) He actually said she might be putting it on or choosing not to speak . I said - what about the fit- he said that people COULD fake a fit. he said that obviously they would go with the advice of the neuro - but the protcol is if they thought it might be organic they may order ct, mri or lumbar puncture, if they didnt deem it neccessary after an examination she would be referred to psychology.
the inference being - this is what he thought it was.

she did get seen by the neuro - who ordered an immediate ct scan (at 7pm) not waiting till morning. it showed unexplained abnormalities, she is due for a mri in morning . and has been put on klexane which apparently prevents clots

my question is am i being unreasonable to think a 20 year old presenting like this - and with parents pushing - should have been noticed there was a problem, beliieved when we said - its not normal and we think theres a problem, and to want to complain - especially if it causes anything that causes her long term problems.

why wouldnt the klexane be prescribed before neuro saw her, why didnt they believe me, why did they intimate she is faking it.

advice please

OP posts:
Redhead11 · 14/04/2015 21:49

The words you need to use in your complaint are 'medical negligence' and 'medical incompetence'. Tell them you are reporting the consultant to the BMA and do so.

i do hope your daughter improves rapidly. I have a DD the same age and my heart goes out to you all. Flowers

nocoolnamesleft · 14/04/2015 21:49

I am very aware that psychological problems can present looking very neurological (including stuff that looks a hell of a lot like a fit). However, I am also very aware that dka can increase the risk of (scary words alert) causing brain damage. It's rare, and a lot rarer than it used to be, but basically if the sugars (and sodium levels) drop really fast, the brain can swell. More common in a bad dka though. The other thought is that if she happens to have a clots too easily problem (thrombophilia), you don't usually know about it until they get into trouble, but more likely to get into trouble when dehydrated (which if she was dka she must have been... and don't want to treat too fast because of avoiding the brain swelling problem).

In your shoes, I'd probably have one more go at communication before complaint (if DD over 18 you would need her agreement for you to hear back from a complaint) - if complaining, asking for PALS is easiest. But for communicating you might want to think about asking....
How severe was her dka?
Was she treated on the adult protocol or the children's/young people's protocol? (Don't know how old she is, but age they change varies by hospital... from 16 yrs to 25yrs...the younger one is designed to protect against the brain swelling thing, as more common in the young)
Are they thinking cerebral oedema? (Name for brain swelling thing)
Are they thinking stroke?(And if so, has she had bloods for thrombophilia screening - neuron team may well have done this)
Could they explain why they were thinking non-organic causes? (Medic speak for psychological etc - there may have been good reasons, but it actually takes a LOT of time to explain them properly)

Apologies I can't be more help - I only know what I'm doing with kids! Best of luck to your DD.

mousmous · 14/04/2015 21:49

beau :o
you don't deal with young independent adults do you?

op, hope your dd makes a good recovery.

Fizrim · 14/04/2015 21:49

I would second (or third) the advice to speak to PALS at the hospital. But prepare yourself for the likely response that a 2 day delay in seeking treatment (when she was in her room) may have made her condition worse. Hopefully the neuro will drive her treatment forward now, they sound the most competent of the bunch!

Has she had any fits previously? I hope she gets some effective treatment and that she recovers well. Must be a very stressful time for you as well.

mousmous · 14/04/2015 21:50

was supposed to be Shock not a grin

wanttosqueezeyou · 14/04/2015 21:51

can you really criticise the care of the staff in the circumstances?

BeaufortBelle Are you saying the failures of the staff shouldn't be criticised because you think the OP shouldn't have gone to work?

You have no idea of the OP's circumstances or how you may feel in her situation.

TheoriginalLEM · 14/04/2015 21:52

Definately complain, they should have listened to your concerns.

Beaufort - the OP had assumed that her DD had gone back to uni!

Fizrim · 14/04/2015 21:53

Is it a specialist neuro unit (the thread is moving faster than my typing!) because if that consultant is the most active, I'd certainly be tempted to go there.

CrispyFern · 14/04/2015 21:53

Beau, I can't believe anyone would be so heartless as to try to unnecessarily shame a mother who is telling you they have a frighteningly sick child! With some utter nonsense!
Shame on you.

PlantCurtain · 14/04/2015 21:54

This reply has been deleted

Message withdrawn at poster's request.

hospitalworry · 14/04/2015 21:55

Beaufort
I can see what you mean
However for me - she is 20
She is as I assumed in 'the best place '
Its 1 nurse to 2 patients - amazing!
I can't actually do anything except come back in 5 hours and see how she is
I got there in morning and woke her up she was ready to sleep again when I left it

OP posts:
AryaOfWinterfell · 14/04/2015 21:55

The only advice I have is to demand a copy of her notes before you leave the hospital. It's quite common for hospitals in the area I live to "misplace" notes once people are discharged. (Or do as a pp mentioned and photograph them whilst you are there)

I hope that the MRI brings answers and that your daughter makes a good recovery Flowers

KatieKaye · 14/04/2015 21:56

Your poor DD. Best wishes for a full recovery.

this treatment is not acceptable. Make sure you have the name(s) of the doctors involved in this decision making and let the hospital know you have full details and will be considering how best to deal with the wholly inadequate treatment your DD has received.

BeaufortBelle · 14/04/2015 22:04

I'm sorry if offence was caused. But yes, I have young independent adults and I cannot comprehend one of them would be collapsed in my home and I would not know - when my son goes back to uni, I always look in on his room just after he has gone. If one of them was admitted to hospital I would not have left them if I was told they were in pain until I was satisfied that pain was being properly managed and a consultant had seen him or her.

The hospital has nothing to be proud of and I hope the OPs daughter gets the care and treatment she needs and makes a full recovery. I am sorry if I don't get how the OP has handled this.

GraysAnalogy · 14/04/2015 22:07

One nurse to two patients and they haven't picked up on her problems? What the actual fuck?!

The wards I go on it's 3 registered nurses to about 30 patients. They know everything about their patients and would pick up on that straight away.

I sometimes think I've been incredibly lucky to work in the places I have, and quite sheltered. Because each day I learn someone new on mumsnet and it shocks me to the core.

I hope she has a good recovery OP I really really do. Flowers

Musicaltheatremum · 14/04/2015 22:09

OP you poor thing. This is awful for you. Do you know her blood sugar and pH aren't that bad considering it was 2 days since you had seen her which makes me think that something has happened before the DKA and that the DKA is the result of not being a left to take the insulin for 2 days. With those levels I would be asking (as you were) why she was so unwell with bloods that aren't that bad. You sound a lot calmer on here than I think you must feel. I don't always check my kids rooms when they go back to college (as I need to pluck up the courage to go in the rooms) I hope you get to the bottom of this. Flowers

efe · 14/04/2015 22:11

OP- you have had good advice on here and I hope your DD recovers quickly.
Please ignore the somewhat thoughtless comments from BeaufortBelle- hopefully if she ever needs to post for support in a worrying time, she won't get a kicking when she's down.

hospitalworry · 14/04/2015 22:12

Don't worry about causing offence Beaufort belle
I would not go STRAIGHT into my dds room to check it out
And I know from previous experience with her in dka it is bullshit that she 'is choosing not to speak because she is in pain '
Yes she may have a headache which nurses should monitor patients pain and administer relevant analgesia

OP posts:
BeaufortBelle · 14/04/2015 22:16

I should have had more empathy but I do really really hope all is well and that she is OK.

hospitalworry · 14/04/2015 22:18

MUSICALTHEATREMUM
support appreciated!
Thanks Beaufort belle x

OP posts:
Christinayangstwistedsister · 14/04/2015 22:19

Follow your gut instinct, medical staff are great but they are not infallible , you know your daughter and if you feel something isn't right then pester them

My husband had an operation to remove some of his colon and he was still in a lot of pain days later, I noticed that his stomach was severely distended , they failed to notice this despite giving him daily injections into his stomach. He eventually had to go on a NG tube to remove fluid, bu only after I kicked up merry hell

I hope everything works out for you all

meercat23 · 14/04/2015 22:21

Beau should have had more empathy......would have been nice if you had shown ANY empathy.

meercat23 · 14/04/2015 22:24

OP Really hope that things start looking much better really quickly.

Some good info in previous posts about how to take your concerns forward. I would certainly make sure they are very clear that you are unhappy with the way that they have dealt with this and expect them to keep on top of the situation from here on.

ThePinkOcelot · 14/04/2015 22:36

No offence OP, but I too am shocked that your dd was in her room for 2 days. Did she not need the loo or something to eat? That in itself is rather worrying.
I agree her treatment seems to have been rather lax and her inability to speak should have rang some warning bells with the staff.
I really hope she makes a quick and full recovery.

WinnieFosterTether · 14/04/2015 22:39

I am appalled at how poorly they have treated your DD. In comparison, my relative was admitted to hospital recently with one issue, and despite only minor signs of confusion was given a CT scan less than 24 hours after admission.

Having had another three relatives that have ended up under the care of a neurological unit in other hospitals (for different reasons), we found it most effective to request a transfer to the nearest neurological unit and for it to be added to the patient's notes that we had made that request. (A move isn't always appropriate but it forces them to explain clearly why they are not taking that option). Likewise any delays with scans or MRI then make it clear you will hold the consultant responsible if this causes any deterioration in your DD's condition. We have found that asking for our requests to be included in the notes or bringing written requests to the hospital with the same purpose has been beneficial.

Stand firm. And do complain about the standard of care to date. Flowers