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

[hospitalworry]

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

PALS. I hope she gets better.

I really hope your daughter gets better soon but how big is your house? Would she have left without saying, 'goodbye'? Don't you check she's arrived safely? Was her diabetes medication still in the cupboard/fridge?

After 2 days you 'erred on the side of caution' and took her in.

What have the doctors said about the delay!

So thankful for your input everyone
Will investigate pals tomorrow
And try and find out the doctors names
Worried about the fact that everyone will cover
Ie ask the neurologist if a delay would have caused a worse prognosis - they dont want to get a colleague in shit so say no

The Pink, the thing is the OP had no reason to think her daughter hadn't gone back to Uni, she was supposed to be working that night so mum probably didn't expect to hear from her. She was seemingly semi conscious in her room so would not have been able to get something to eat and had been incontinent of urine. I am sure OP feels hellish and wished she had checked earlier but it's easy to say that after the event. If door was shut and there was no need to go in then I may have done the same thing. Let's not make her feel worse.

Cordelia
Our house - 4 beds on normal first floor -- kids
Top floor me and dh
Yes I wouldn't have expected a 'goodbye'
She had already said she was going Friday morning and working in the night.
I wouldn't have checked she's arrived, no, it's nearby and she comes back regularly and it's approx an hour from our front door to hers at university!
I erred on the side of caution the minute I found her. Which happened to be after 2 days.
The doctor has not mentioned the delay coz they thought she is faking it!

They probably will say 'no' for what has gone before. You just have to make it clear that you are holding them responsible for those delays and will definitely hold them responsible for any delays going forward. Stick to the simple questions of 'and if you delay with the MRI/etc and x happens?'

I am not an armchair doctor and have no experience of diabetes. However I have spent more time visiting relatives in neurological units than I would like. Please don't feel bad about pressuring them to do all tests asap. Also do ask about the possibility of moving to the specialist unit in the other hospital (if you DD is stable enough to be moved) saying you have little faith in the current hospital.
Sending you and your DD lots of wishes for a speedy recovery.

Just wanted to say, I've had both a bleed on the brain and a DVT and PE (clot in calf and double lungs). If Enoxaparin (heparin) had been started immediately when I had my stroke, it would have killed me. Depending on whether there is a bleed or a clot (blockage) depends on the treatment and without a ct/mri it is impossible to decipher between the two.

Also, starting Heparin after being admitted to hospital is almost routine these days. Especially in HDU or ICU. 9 times out of 10 it has nothing to do with what's already happened, it's to help prevent DVT in those that don't/can't get out of bed. It's a common/normal part of planned surgery that will require a hospital stay too.

You need to see the Neuro re: these abnormalities. Get them to bleep on the on call register if Neuro has gone home.

Who knows
Speak to you all tomorrow
Beyond fed up
Thanks for the help and replies
Action will be pals
Complaints
Ask for transfer

So scared about challenging the NHS and if we get worse treatment because of it
And the exact procedure

I can't understand the 'err on the side of caution' comment, have you used the wrong terminology?? You found your daughter unconscious, incontinent and she was probably like that for 2 days?? Surely you called an ambulance or rushed her to hospital ASAP?

Sorry this has happened to your daughter, complaining to PALS should of course not cause them to treat you worse, you need to stand up and fight for your daughters rights. Don't take no or we don't know for an answer. You need to ask the questions you need to know and keep doing so.

OP . How awful for you. Ignore the heartless posters giving you a hard time.
My advice is to take a notebook in and each time they speak with you write down their name, date and what they said. Let them see you doing this. Keep track of everything that is said and ask firmly but politely for what you want and then write down their response.

If you are in Scotland remember we dont have PALS

Ask for a meeting with the critical care matron and lead consultant concerning your daughters care.
Ask them to clearly explain their rationale for all treatments/investigations she has had and the timescale of them.
Be as assertive as you can be and highlight your concerns.
I work in this area, in my experience the clearer and more assertive you are in wanting to know all the facts etc results in, for want of a better phrase, more attention to detail, rather than your daughters care being compromised as a result.

It does sound very odd, her ph was normal and bm not that high - re teams at admissions and after absolutely should have been looking at other differentials especially given the history.

Hope you get it sorted x

OP did you tell all the staff you have spoken to that she was unconscious/semi-conscious for 2 days before she was taken in? As if you were relying on them reading the notes they may not have done?

I am just reading this for the first time but wanted to share my experience. My mum came home from work on the Friday feeling a bit run down. Sunday she seemed better but Monday my dad found her in a very confused state. She was taken to hospital with suspected encephalitis, stroke or a bleed on the brain. When I arrived she was sat up and talking but after a lumbar puncture lost consciousness. Her symptoms over the next few days were very strange. Lost speech and motor skills. Sometimes awake, sometimes unconscious/heavy sleeping. She wasn't at all distressed, lots of vacant smiling and nodding but she looked at a spoon as if she didn't know what it was for and sometimes didn't recognise us. I also noticed periods where she would stare blankly for a few seconds and then seeminly recover. As she was quiet and not apparently in pain and receiving appropriate treatments docs and nursing staff seemed unconcerned but as a family we knew this was all completely out of character. I kept a diary and we set up a rota staying with her around the clock for the first few days (she was in a private room and as long as we were helpful and worked with staff they didn't seem to mind and I ensured I befriended nursing staff in the early hrs so we had them onside). After 3 days, I was concerned by the lack of improvement and specialist intervention. A transfer to a brain injury unit had been raised but not seen as essential. An MRI scan was booked but then cancelled as unnecessary but one of our friendly nurses 'overlooked' the cancellation in mums notes and wheeled her down regardless. When the results came back suddenly every consultant was visiting mums room. She was 'happily' sitting up and eating (like a baby might wonder at a new experience) but the mri showed she should be unconscious. One consultant even took her notes with him to an international medical convention to seek input. They still didn't agree to a transfer, saying that they could improve her care where she was but by the weekend her symptoms were still all over the place and I was terrified by the way treatment seems to stop and run on 'maintenance' mode out of hours. I sobbed in a toilet and then pinned the on duty doctor into an office an sobbed on him, telling him there was more to mums condition than they were treating. Finally he agreed to a transfer to the specialist hospital and even agreed it was so urgent that we would be blue lighted there. I think it took until the next day for this to happen. The blank staring episodes were also diagnosed as potential 'absent seizures' which are undramatic but could take away brain function each time they went unnoticed and untreated. She was placed on an anti-seizure drug. The brain unit was completely different. We weren't allowed to stay but were there from the start to end of visiting hours. The Neuro symptoms were treated much more seriously although attention to details of care were still lacking eg. They would bring her breakfast and take it away saying she hasn't eaten it, and couldn't grasp why she struggled to choose between two menu options. While we felt more comfortable with the input from consultants, we still fiercely monitored and pushed for her general care needs to be met.

My advice:

1. listen to your instincts
2. never assume medical staff know better than you
3. keep a diary (and sit down asap and write down everything you can about the days so far)
4. as much as possible, make friends with staff - try to show them you are working with them even when you despair about the lack of attention (I don't blame individual staff but more the current system and level of work expected from staff)
5. at the same time don't be afraid to kick up a fuss, push for tests / transfers - use whatever it takes to get them to take you seriously
6. make sure you are there at consultant rounds so you can listen / make notes / ask questions / tell them the whole history
7. focus on what your daughter needs right now, there will be time to worry about what has already happened/what will happen further down the line
8. this may be controversial, but I found online reading and patient guidance really helpful. Several medical staff told me not to google, but several times it proved invaluable helping me ask questions etc which proved pertinent to her condition and treatment
9. don't be put off by the fact she is an adult, in this situation she sounds as vulnerable as a child as did my mum so needs you as an advocate

Finally, is it worth raising with staff whether it could be something separate to her diabetes? Sometimes, I think medical staff can fall into a trap of treating what appears to be the obvious condition and don't take a step back to assess the bigger picture. If her tests came back fairly normal then is it worth them considering a brain infection like meningitis or encephalitis? Maybe worth reading the symptoms and seeing what you think. My mum was lucky in that respect, but there have been cases where younger teen patients were dismissed in a similiar way to your daughter. If it is something like this, then anti virals need to be given asap.

My mum did make pretty much a full recovery, even though at times we prepared ourselves for a much worse outcome!

Sending to you, your daughter and family

I'm so sorry you are going through this, I understand how terrified you must feel, and how challenging the NHS can feel terrifying when you are relying on them for your daughter's care. My baby had what looked like a series of seizures in hospital, turned out to be an immature nervous system, but we were told it looked bad for him. He had an emergency CT scan, lumber punctures and was then transferred to a specialist hospital for an EEG - I would push for the transfer and ask that your request be written in her notes. I am absolutely no expert and it looks like lots of knowledgeable people have written here, but I just wanted to say what a consultant told me (our baby's MRI originally looked like he had a brain bleed, turned out to be normal fetal homaglobin) and that was that young people's brains are incredibly pliable and that means recovery from a brain injury can be much better / quicker then expected. Thoughts going out to you and your family, you will get your answers even if it takes time and your daughter is lucky to have a mum who is fighting for her xx

OP, do the medical team know about the delay in her presenting at hospital? Sorry if I missed the info. If not, they need to know.

I agree with PPs. It seems plausible that something neurological happened to your daughter on Thurs overnight or Fri day, which rendered her unable to manage her diabetes over the weekend. If the hospital don't know about the delay, they aren't able to build a likely sequence of events.

OP, have you tried contacting the chief executive's office. I had problems with a complaint I made about an episode I suffered in hospital and they were brilliant.
Please don't be frightened of complaining, the reason that cases where complaining leads to worse treatment hit the news is because they are pretty rare. Mostly HCPs are devasted when they or their dept is complained about and pull their socks up in future.

As pp advised write everything down, keep a log of treatments, conversations, what was relayed etc. Also speak to the matron, that's how we lodged a complaint regarding a family member who successfully sued the hospital for medical negligence. Don't be intimidated by them, if you make a formal complaint and say you will be consulting a solicitor, I think you will find her care improving, as they will be bricking it. This was the case with my family member.
I hope she will be ok

Depends on the hospital but our pals is fab and we want staff to recognise and learn from their mistakes. No cover up in our trust. Good luck x

Make covert recordings and do not trust them. They lie to get out of trouble. Ben there with the lots fob them off it is a mh issue. It's practicing lazy medicine.

How horrid and frightening for you all!!

Think the note book idea is good.

I despair of medics who mention half-cooked psychological explanations!!

Before any psychological cause is mentioned a full coherent medical work up should be done, AND discounted before any psychological /non organic causes are given.

I did read the full thread last night, but dobt recall. OP have you asked or been told what the full range of differential diagnoses are? i. e what other medical causes are they considering??

Hugs!

A notebook is not evidence, it will be your word against your word. Phones have video and audio recordings apps use them. It is evidence.

She was going to have an mri today but not now apparently as she has SLIGHTLY improved
She was put on antivirals last night and is moving to specialist unit either today or tomorrow

Haven't been given any possible diagnosis (as 'that is what neuro place will do '