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Advice please.
Can anyone advise me on the best way forward please.
My daughter is in hospital again, she has suffered with the same condition for 14 years, constant vomiting and pain in her abdomen, she has hospital admissions every 3 or 4 months, each time the hospital start asking if she has taken any drugs, which is fair enough for the odd one or two times a patient would be admitted, but seems overkill on a patient who suffers with their mental health, as it’s viewed by my dear daughter as pointing the finger at her for her condition.
The last time she was in my wife and I had a meeting with the consultant, he eventually diagnosed EDS , she also has hyper mobility.
He promised us he would write up a care plan for any future admission, I won’t go into the details of the plan as it’s too complicated for a simple soul like me.
Cue this admission yesterday.
First thing they do is ask her if she has taken any IV ‘recreational drugs’ at home.
Secondly she is put in a bay where she is the only woman , all men in other beds.
Thirdly, her meds prescribed are all oral, which seems odd to a patient who is constantly vomiting.
When asked about the care plan, the response was “ It’s an old plan, and we can’t access it”
I’m going up to see her today and hopefully get to speak to a doctor.
It’s heartbreaking when my daughter messages me to say she doesn’t want to do this anymore.
My daughter is in hospital again, she has suffered with the same condition for 14 years, constant vomiting and pain in her abdomen, she has hospital admissions every 3 or 4 months, each time the hospital start asking if she has taken any drugs, which is fair enough for the odd one or two times a patient would be admitted, but seems overkill on a patient who suffers with their mental health, as it’s viewed by my dear daughter as pointing the finger at her for her condition.
The last time she was in my wife and I had a meeting with the consultant, he eventually diagnosed EDS , she also has hyper mobility.
He promised us he would write up a care plan for any future admission, I won’t go into the details of the plan as it’s too complicated for a simple soul like me.
Cue this admission yesterday.
First thing they do is ask her if she has taken any IV ‘recreational drugs’ at home.
Secondly she is put in a bay where she is the only woman , all men in other beds.
Thirdly, her meds prescribed are all oral, which seems odd to a patient who is constantly vomiting.
When asked about the care plan, the response was “ It’s an old plan, and we can’t access it”
I’m going up to see her today and hopefully get to speak to a doctor.
It’s heartbreaking when my daughter messages me to say she doesn’t want to do this anymore.
Comments
I'm not a medical expert but I'm sure they have set checklists to go through depending on the symptoms. Severe abdominal pain and vomiting would mean that one of the first things they would need to check is any drug use. They are certainly not pointing the finger at your daughter, just following protocol, but maybe this wasn't explained to her as it should have been.
Can you get a copy of the care plan? Does your daughter have one? If you can then maybe go through it with her consultant and ask whether it can be used as the basis for her care now, which bits can be used and which bits can't and why. I would hope that her new car plan will be an improvement on the existing one, not a step backwards.
I hope she feels better today and that things work out, she's got a family that loves her to bits, that's obviously pulled her through tough times in the past and I'm sure it will now.
Lastly, I've got meetings in Brighton tomorrow morning but should be finished by early afternoon, I can quite easily pop into Eastbourne on my way back if you fancy a coffee and a chat, as they say a problem shared.....
Sorry to hear this Tom. Sadly, I have no advice to offer, except try to stay positive, & encourage your Daughter to do the same.
Fingers crossed.
“Get a copy of the care plan”
Good idea, sadly when we asked for a copy we were told they can’t do that due to gdpr ( or similar) we are only the parents you see, she has a partner who would be her next of kin.
When my daughter asked for a copy, she was given a scribbled note, and she was in no fit state to argue her case. Her partner was juggling work, looking after a 5 yr old, and trying to visit when he could.
Agree re protocols about asking about drug use, her fragile mental state plays a huge part in her reactions, it would be good for any ‘care’ to take this into consideration.
Having said all the above, things seem to be moving along today, she’s just seen a doctor who apologised about her treatment yesterday and says she will write in todays notes for medication to be changed from oral.
On the flip side to that ^ , the staff seem to change weekly ( sometimes daily) and it seems nobody agrees on which care ( or plan ) to follow, so it becomes a bit of a lottery as to what happens from hour to hour, day to day, which obviously has a detrimental effect on not only her physical, but her mental health too.
They are there for stuff just like this and will give help and advice. It's free and I have found it to be effective when facing red tape regarding patient care etc.
Honestly, I wouldn't know what to do, i know they're over worked and stressed, it's probably wrong way to go about it but I'd be on their case constantly and telling them firmly and sternly to get sorted out of ear shot of your daughter obviously.
Like i say its probably the wrong way but I wouldn't be able to help myself you'd do anything for your kids
Stay positive mate
My dear daughter was discharged from Hospital yesterday.
The consultant was very good, we had a few meetings with him and he has fulfilled all the promises he made , there is a care plan written for if/when she gets admitted again.
Fingers crossed it gets followed.
Appreciate the messages of support.
Great news Tom, thanks for letting us know.
The only advice I can offer, is that as it seems to be you and your wife that primarily deal with the hospital, and the next of kin thing seems to regularly crop up, would it not be a good idea for your daughter to make you and your wife next of kin, at least as far as the hospital is concerned.
This would seem to make far more sense, as your daughters partner seems to have plenty on his plate.
I would be tempted to lie, and say they had spilt up, but remained friends, in case they questioned his visits.
Although I am sure this could be done properly, and @Essexphil could probably offer some advice.
You could then insist on a proper copy of a care plan.
Your daughter could retain a few copies, and present one to them on admission.
You and your wife could retain a few back up copies, in case things went wrong.
You could even scan, and email them a copy, if they lost it again, or were using the wrong one.
I'm sure there may well be good and less good days to come, but the recent news is both heartening and gives cause for (cautious) optimism.
Hope all goes well for you and yours, Tom. I'd help if I could but, frankly, I know next to nothing about this sort of thing.
I just thought you may have been able to offer a solution to that problem.
That is, if Tom wished to do so.
Thanks for the kind words , and offering advice.
It’s not so much refusing to engage with me,it’s the more personal details of dear daughters intimate condition, which is fair enough.
I hope I haven’t given you the wrong impression of her partner, as without him she would be in a very dark place, he’s a very calming presence for her and is spinning lots of plates as I mentioned above, plus I have a great boss who is very understanding and allows me time off at the drop of a hat, and my wife can work flexi-time so we are in a much better place than he is with regards to visiting and attending meetings.
As far as putting myself or my good lady down as next of kin, my dear daughter wouldn’t agree to that, as it would be quite a kick in the teeth to her partner who she loves dearly.
It’s been mentioned that dear daughter will take copies of the care plan, laminate one for herself and give us a copy for “ Mum to put it in the incredibly well organised filing system she has”
Thanks for the kind words., I agree we can be cautiously optimistic, and I’m really happy that the care plan showed a lot of detail.
Good luck.
With respect to the 'next of kin' problems it might be worth considering arranging a Lasting Power of Attorney (Health and Welfare) for your daughter, you could appoint her partner and you and your wife as attorneys so that you can make decisions on her healthcare if she is not able to.
The form and Government guidance notes are available via
https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/211171/LPA114_health_and_welfare_LPA.pdf#:~:text=Your attorneys can use this lasting power of,your personal health and welfare but not others.
The current cost is £82 but please be aware that it may take some weeks/months to get it registered. Once it is registered you can forward it to your daughter's healthcare providers who should note it on her medical file.