To be so pissed off with my Dad's care in hospital

[RhubarbyTree]

He's been in for 12 days. I've been unable to visit because he tested positive for covid upon admission. I can visit from tomorrow.

I have told them multiple times I have full POA. His wife, my stepmum, has been the designated visitor. She cannot cope with his health needs. She also has memory issues. I deal with everything medical and financial to do with my Dad.

The hospital has been shocking at telling me anything. It took the consultant 4 days to call me back. The nurses get pissed off when I call saying "your Mum is here, why do we need to repeat ourselves?". I have told everyone numerous times I deal with everything medical to do with my Dad. Was asked for the 5th time today if I'm down as next of kin/POA. Yep, the same as the last 4 times you asked me.

I was told yesterday his blood sugar levels are high (diabetic). I was very surprised as they've been under control the past few months after a change in regime, for the first time in years. I then discovered they'd dropped his insulin from 4 times a day to 2. No consultation. It took us MONTHS to get them under control and then the "expert" came along and changed them and now he's high and not feeling well.

I spoke to his nurse earlier about it, we discussed it and the nurse said my concerns are noted and we can speak tomorrow about it when I'm in. Spoke to my Dad afterwards and he told me he fell when they made him try to get out of bed. I was never told about this.

They will not tell me anything. I spoke to his GP on Friday who told me more about his results in hospital than I've been told in the 12 days since he's been in.

Am I overreacting?? Should I let the hospital get on with it? It has been like pulling teeth. The attitude I get when I phone had been unreal. It would take me ages to list the cock ups since he's been in. If they'd only speak to me like I've asked (several times) then they'd be aware of so much more.

No you aren’t overreacting and tomorrow you need to find who is in charge and raise a stink about his care and your lack of information. I went through something similar last summer. And after several phone calls with the right people managed to get the communication path sorted.

I’m sorry you’re going through this it sucks.

That's just awful, it doesn't sound like you are overreacting and it might be worth raising a complaint via PALS. They should have a rep a the hospital.

You’re not being unreasonable. Sadly I think it’s the NHS is in a real state with very overworked staff who are exhausted with a huge workload

I have LPOA for my mum and I’m pretty sure the solicitor told us that when I act as attorney I become my mum’s representative to the point that they have to deal with me the same way they would deal with her. It’s actually more than simply next of kin, and medical staff should not be fobbing you off as “just” a family member. Don’t say you are next of kin, say you are your dad’s legal representative and are effectively speaking with your dad’s voice. If anything I’d say you’re under reacting if it’s been going on 12 days already.

I presume you’ll be visiting tomorrow. It’s a sad reflection of staffing levels in the NHS that patients need someone to advocate for them when they’re in hospital. I had to do it for my dad when he was with us as my mum isn’t one for making a fuss. I took the route of polite persistence which worked, but it was pre-Covid. Best of luck - that insulin needs sorting asap.

Have the hospital done a capacity assessment on your Dad in relation to his ongoing treatment and noted it in his records?

Not being unreasonable!

His sugar will be high due to the Covid though, and probably the meds he's on. It'll settle once the infection clears.

You’re not being unreasonable at all. Side note - sometimes with Covid people have dexamethasone (steroid) as part of their treatment and that does elevate sugar levels.

Has your dad lost mental capacity? If not, then they will consult with him with regards medical needs. POA only kicks in when he loses capacity. It's different for financial affairs, the attorney can act as soon as the document is registered. Hope your dad is better soon.

We had similar when my dad was in hospital last summer. Mum has alzheimer's and can hardly remember the hospital have spoken to her let alone what they have said. But that didn't stop them phoning her to explain the discharge details. So confused she phoned the care home he was going to go to the next day and then was totally distraught because he wasn't there so she didn't know where he was. She took a lot of calming down and DB and I had to try calling for hours before we could find out what the hell was going on.

Complain to PALS immediately and keep complaining.

I had a similar experience last year, constant errors and atrocious communication.

We got a formal apology from the hospital and they identified areas for further staff training blah blah but it was a really traumatic time and I wish I had complained sooner.

Speak to PALS today and tell them you're pushing for a formal complaint for poor care, what their staff are doing is in brech of the POA in place and misconduct.

This is why nedical staff should have a solid grounding in 'customer' care not just medical care ffs. Infuriating. Every other industry that deals with the public has minimum quality standards for case management and communication. Except the NHS 🤷🏼‍♀️

YANBU, lack of communication is very frustrating !

As others have mentioned , there can be reasons other than a regime change that will increase his BG readings, having an infection can do this too. If they have increased due to steroids, it can take a little while to settle.
It might be worth trying to contact the specialist diabetic nurses ( hospital switchboard should be able to put you through , might be an answer phone ) to see if they were involved and get some understanding on the reasons for the regime change ? Was he self caring with his insulin before he went into hospital ? Will he still be able to manage this when he gets home ?
As for the fall, they might have tried to transfer him from the bed to the chair and he fell back onto the bed but no injury was sustained iyswim and so staff might not have felt it worth mentioning ? Did he mention any injury ?
It is really worrying if he hasn't been able to get up out of bed for 12 days, that's a significant period of bedrest, especially for an older person. Was he mobile and able to get up out of bed without help, before going into hospital ? Is there a plan regarding rehab ?

Questions I would ask when you visit;

What's the plan ? - the one written in the notes by the Doctors.

Has he had physio and OT input ? - Ask if it would be possible to speak to the physio/OT dealing with him and describe how he was prior to admission if you know, what is he managing now and what the plan is to get him back to that level and if they think its possible.

Have they got a discharge date ? - don't be suprised if it sounds scarily soon.

Hope you get better information face to face and your Dad feels better soon.

As pp said it does depend on your dad’s capacity - despite the POA. If he does not have capacity then when you go in tomorrow take a copy of the POA with you.

Contact PALS and complain.
Make it firmly known that you are NOK , and that DSM is not your mother. That all communication about him is to you.

Lasting Power of Attorney is NOT dependent on capacity. The Attorney can act at any time, although if the person concerned does have capacity then the Attorney has to abide and act to their wishes. It enables people to be advocates in exactly this kind of situation.

(I am assuming that OP has the newer LPOA and not the older POA that was dependent on capacity)

LPOA for Health does depend on capacity. If the patient has capacity, then you always deal with the patient.

i agree the LPOA cannot make decisions until the donor has lost capacity. But the LPOA can insist on being kept informed so they can effectively advocate for the donor and ensure their wishes are carried out.

Have they done a capacity assessment and deemed your dad as not having capacity? POA is for when he doesn't have capacity and not before. Did he have capacity before he was admitted?

That could be why you've not been informed as you wish you had, also if you dad has the ability to pass on information to you. I wouldn't feel it necessary to pass on medical information in those circumstances.

When someone falls we have to do a 'duty of candour disclosure' where we inform the patient (if they have capacity) or NOK/POA if not. That could also be why you've not been informed.

When someone is unwell their body acts differently and blood glucose does very strange things, it could also be effected by different meal times/eating different foods to at home. Any changes to his insulin will have been made because of that. They'll probably ask for a GP review after discharge to monitor and change back if needed.

@Funnelfanjo

Not until the person loses capacity.

@RhubarbyTree have you given the ward you LPA documents. You need to take them in to be seen by the ward along with your photo id, you wouldn't believe how many people claim they have LPA but don't.

My Dad has not had a capacity assessment, his GP brought it up before Christmas as he was concerned but it never went any further. He was diagnosed with dementia at the end of last year. The welfare part of the POA doesn't kick in until he is deemed to no longer have capacity.

It's so frustrating as I deal with every single one of his healthcare professionals when he's at home, including his carers and SW.

I don't know what is deemed to no longer have capacity. Up until now I've just been fighting for him to get the medical care and home care he requires, plus dealing with his finances. I've been trying since November to get his PIP increased but that's a whole other thread.

They have it on his notes I have full POA, not that it's made any difference. His GP would definitely say I should be the one they're dealing with, is it worth going down that route?

Contact Pals. I have had variances on your experiences for the last 2 years. My mother died in hospital last year and they didn't tell me until I turned up for visiting - 6 hours later. Then just a casual, "oh, she died this morning, didn't you know?"

My dad then became ill and has been in and out of hospital since. Bloody nightmare.

I contacted Pals after one stay earlier this year and to be fair, things have slightly improved but you have to be a thorn in their side or they'll completely ignore you.

Bloody hell @Justcallmebebes that’s horrific about your mum. So sorry you found out like that

Raise a complaint. You have POA so every little part of his care should be run by you, not your Mum. I'm sorry you're having to deal with this

Capacity is decision and time specific. There is no such thing as having capacity or not, it relates to specific decisions.
So, with regards to your father OP, a question could be “does this patient have capacity to make decisions relating to the management of his diabetes?”
Then staff will carry out an assessment relating to that question. If he does have capacity then the change from 4 doses to two doses of insulin will be discussed with him and a decision will be made. If he does not have capacity then a decision will be make in his best interests.
However, as part of that assessment, clinical staff should be doing whatever is necessary to support the patient to make their own decisions, and in your dad’s case, if you have been very involved in supporting him with his diabetes management, they should have attempted at the very least to involve you in supporting him to make the decision.
If he does not have capacity with regards to this decision, then as POA you should be consulted.
Every decision is different, and needs its own capacity assessment.
hope that helps.

YANBU

Similar happened to my F-I-L and he was not given his meds for 5 DAYS! Important meds (he's also diabetic) and the staff just would not listen to his daughter - absolutely shocking serious of events

He was suffering with confusion but staff insisted he was fine - how would they know he was "fine" if they don't actually know him as a person and how he usually acts/speaks? Totally shambolic and a complaint has been submitted

Nothing will change though, I work at said hospital and people have been making the same complaints for YEARS and nothing ever gets done

So frustrating

Hope you DF is better soon