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

(242 Posts)
hospitalworry Tue 14-Apr-15 20:56:07

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

SweetPeaSoup Tue 14-Apr-15 21:01:28

I have no advice, but posting to bump for you flowers

Patatas Tue 14-Apr-15 21:01:28

I'm sorry I don't have any advice, just wanted to say how awful this must be for you all, I am so shocked at what you have had to put up with.

I think you would be perfectly within your rights to complain about this. I hope your daughter gets the treatment she deserves now.

SiobhanSharpe Tue 14-Apr-15 21:03:13

They do seem to have been somewhat dismissive about your concerns. I would ask about the complaints procedure, say you are v.unhappy that treatment may have been delayed and wish to take it further.

Blueskybrightstar Tue 14-Apr-15 21:08:04

I'm so sorry you are experiencing this. It sounds to me like they've provided very poor care with a complete lack of understanding of her condition and an unwillingness to listen. To me it sounds arrogant that theyd be trying to pin this on psyxh issues simply Because they dont know what was causing these problems. I'd push and escalate this complaint when you have time to. I really hope everything works out fine with your DD and that she makes a full recovery soon.

Girlwhowearsglasses Tue 14-Apr-15 21:17:43

Oh my god it sounds like they're treating her like a ten year old. Makes me feel a bit sick because I was in ITU at that age with meningitis & septicaemia.

I would write it all down, have a peek in her notes, photograph them so you don't have to ask officially and wait for them.

Complain yes, and I do hope they are on to it now and she gets the help she needs

Girlwhowearsglasses Tue 14-Apr-15 21:19:03

Ask the neuro straight out if delay has caused problems. Ask why not give t the drug earlier and why not

whiteblossom Tue 14-Apr-15 21:19:33

I think you know your daughter best and you have to go with your gut instinct. Keep pushing. I really hope your dd makes a full recovery x

neolara Tue 14-Apr-15 21:19:49

Bloody hell. Sounds rubbish. I took my friend into a & E when she was in dka. She wasn't making much sense but she could certainly talk. After an hour or so of mens she was talking completely coherently.

I'm sorry this has happened to your dd. I hope she has a speedy recovery.

PurpleWithRed Tue 14-Apr-15 21:21:08

Contact PALS - patient liaison service at the hospital.

WipsGlitter Tue 14-Apr-15 21:22:13

Sounds terrible.

Am I right that she was in her room for two days before your realised she was there?

Is she managing her diabetes ok the rest of the time?

NurseP Tue 14-Apr-15 21:22:59

I hope she is on the mend. You must complain! This sounds awful! Why would somebody fake a fit and pretend to be unable to speak??! If there are no reasons to suggest that this is 'put on' then this is an outrageous accusation!
Maybe the clexane is because they do suspect a stoke? Or may be hospital policy to give it to all patients to prevent blood clots? Some hospitals do this with tinzaparin rather that clexane.
I'm glad the neuro seems to be getting things moving.
I would suggest keeping a diary to aid you when putting in a complaint to keep it concise and factual. Also, meeting with the consultant to go through the notes and help you understand what happened and why may benefit you.

Best wishes for you and your daughter . X

CrapBag Tue 14-Apr-15 21:24:18

How awful and how disgusting that they are dismissing you this way.

I would certainly write everything down ready for a formal complaint.

I hope your DD gets better soon. flowers

NurseP Tue 14-Apr-15 21:26:20

Hano on- just re- read a bit. The clexane would not have been given before the scan as a stroke can be caused by a bleed it a clot and they must confirm that it's not a bleed as clexane would be the last thing you would want in that situation. X

hospitalworry Tue 14-Apr-15 21:27:45

dont you think they should have scanned her a lot sooner?

hospitalworry Tue 14-Apr-15 21:30:22

the fact that there were no other investigations re neuro stuff and we as parents had to raise this as a possible issue (but fobbed off - thank god we are reasonably educated and knew about this as a potential issue)
- what do you think about that

pudseypie Tue 14-Apr-15 21:32:28

Write down some notes of what has happened, a brief time line etc. then ask to see the lead consultant and make it clear you have serious concerns over her care. If you don't have any luck go and see PALS who will be located somewhere in the hospital and they should help.
Good luck and wishing your daughter a speedy recovery thanks

wanttosqueezeyou Tue 14-Apr-15 21:32:54

Contact PALS.
YANBU

hospitalworry Tue 14-Apr-15 21:35:35

Wispsglitter
Yes that's right

Bugsylugs Tue 14-Apr-15 21:35:36

Hospital, nurse is right re clexane am astounded re the need for neuro input re scan. Mute etc does not come on as a new thing like that. There are 2 days unaccounted for where she was unwell scan first ask questions later. Not talking, new fit each a reason to scan in their own right.

Poor you poor daughter def complain or speak to pals

CrispyFern Tue 14-Apr-15 21:37:52

Try to write everything down, times dates people. This sounds awful, really awful. I hope your daughter is Ok, the hospital sound absolutely shit. You must be so furious and worried. I feel really upset for you reading it.

ciyoa Tue 14-Apr-15 21:38:59

Hi,
Gosh sounds scary for her and you.

From the limited info here it does sound entirely reasonable that a ct scan could have been ordered urgently earlier. I would want to have a meeting with consultant and request neuro lead consultant as her lead Dr. I would make it very clear I was unhappy and deeply concerned about my daughter and that I expect full investigations into any abnormalities in her condition or presentation that they or we notice. I would hint at NICE guidance and legalities.

You know your daughter best, always be confident in that, you are 100% right to be assertive and advocate for her. Do not be fobbed off.

Hope she improves soon, it must be very difficult for you all x

BeaufortBelle Tue 14-Apr-15 21:40:50

OP are you saying she was in her room for two days before you noticed?/ Are you also saying that you visited on your way to work when she was admitted the night before? She was unwell and you were told she was in pain and that was why she couldn't talk, and so you went to work and left her.

I'm sorry if that sounds harsh but can you really criticise the care of the staff in the circumstances?

I wish your daughter a fast and speedy recovery and hope it is complete but I'm sorry I'm a little bit shocked at what you have posted beyond the hospital side of things. Of course the hospital should be providing optimum care - totally and absolutely. But in the same circumstances I would not have left my daughter.

LakeOfDreams Tue 14-Apr-15 21:45:01

It's strange that your daughter was not frightened by being unable to speak, I suspect this may have thrown doctors off a bit. I work with children and they are generally very frustrated with any change or loss in communication skills. Teenagers especially hit out, kick, cry and become very frustrated by not being able to make their needs known.

This doesn't excuse their treatment but in my experience it is amazingly unusual to find someone so passive when they have completely lost their communication skills.

We nearly always scan patients in DKA who have a reduced GCS as the chance of cerebral oedema is quite high, I would have thought your daughter would have been scanned due to her prolonged period of unconsciousness before you found her.

Talk to PALS who should be available in the hospital, they are professionals there to help patients and families to complain about the care they have received.

Good luck and I hope your daughter recovers soon

GraysAnalogy Tue 14-Apr-15 21:47:14

Oh my god. This is absolutely disgusting.

I'm gobsmacked.

I would demand to speak to a different consultant. I would tell them that this is not her, and that something is wrong. I would perhaps ask for a transfer to a different hospital actually because they apparently don't know their arse from their elbow. I would want to speak to the matron, don't get passed onto the ward manager, and they should press further.

I am so so sorry you're going through this. It makes me ashamed to be part of the NHS.

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