Elderly and vulnerable mum is in hospital, not getting answers, what can I do?

[ApriltoNovember]

The last few days have been very stressful.

Mum is almost 83, 8 years into an Alzheimer's diagnosis, frail from osteoporosis, heart disease and breast cancer. She can not communicate well and struggles with her words and doesn't really understand what people are saying to her. She can feed and drink for herself but only with special adaptations (ie beakers with handles etc) and with assistance.

Mum appeared unwell last Thursday, she felt warm and was unusually sleepy (more than usual). On Friday I called the GP surgery, the nurse called me back and diagnosed a UTI over the phone. She prescribed antibiotics which I gave to mum. However, on Saturday the carers were worried that mum was still quite hot and noticed one of her knees appeared to be swollen. I called 111 who then called for an ambulance. The paramedic was concerned mum may have a blood clot (mum suffered a blood clot 2 years ago from her Tamoxifen medication), so off to A&E we went.

A&E doctor quickly dismissed the blot clot but still ordered a scan and said he thought it may be septic arthritis. Twenty six hours later laying on a hospital trolley in the corridor mum was finally given a bed on a frailty unit. This was late Sunday evening.

I went again to see her on Monday and she seemed a lot brighter but to say to me that she was very frightened and scared then started to cry. This was so upsetting as it's the most she has spoke for a while so must have taken such an effort to say and it simply broke my heart.

I noticed there was nothing written on the white board above her bed and there was a stone cold mug of tea on her table. I told the catering guy that mum has advanced dementia and could not drink for herself, he said he had no idea as no one had told him and got me a beaker for mum.

The unit mum was on was a very large mixed ward with 22 beds, all full and with just 2 nurses on the whole time I was there (hours). It was very difficult to track anyone down as they were always dealing with someone else. I finally found a nurse for an update to be told little had been done. Mum still hadn't had the ultrasound doppler scan on her knee. An aspirate had been taken from her knee but that was in A&E as I was with her then (no bedside manner from that doctor, poor mum screamed her head off and he said nothing to her to ease her distress).

I got home Monday and managed to telephone a doctor from that unit who basically told me that she didn't feel there was much wrong with mum, it probably WAS simply down to a uti and due to her dementia it would be wise that mum is only ever admitted to hospital under very exceptional circumstances which I have always been in agreement with (my dad has a different opinion and I am always clashing with him over mum's care). This doctor told me mum could be discharged the next day (yesterday).

I rang the unit yesterday morning to be told mum was not good. I asked why and the nurse said mum was very drowsy and they couldn't get her round, blood tests revealed she is very dehydrated. I said it is no wonder because mum has not been given enough fluids and she can not drink for herself (when there I am giving her cartons of drink with a straw which is much easier for her). Been told a straw is a chocking risk so they won't give her one (would rather she became dehydrated instead) explained that every time I speak to someone they are always new and have no idea mum is in the late stages of Alzheimer's, I asked why there is no info on the whiteboard only to be told it's because the whiteboard pens go missing!

Later the doctor rang to say she was disappointed mum has taken a turn for the worse and she now has bad diarrhoea and is being tested for C Diff, I am hoping and praying my poor mum does not have this as I think it will finish her off. Unfortunately I could not get to the hospital yesterday, my sister was away for the weekend but came back early so she could go to mum and said she slept the whole time. She spoke to a nurse regarding the suspected C diff and they knew nothing about it!

I then received a phone call at 5pm yesterday to tell me mum is too unwell to stay on the frailty unit as it is a ward for people about to be discharged and she will now be place in another ward. From 7pm until 9pm I rang this ward and no one answered, eventually I managed to speak to someone who told me all the nurses on this ward are in a meeting and I needed to call back at 11pm. I called back only for there to be no answer again. I am just about to call back again (thought I would leave it due to breakfast time) but I am in pieces worrying about my poor vulnerable mum.

What can I do? Who can I ask for and what shall I ask? I am quite a passive person and don't like to make a fuss but I want answers, what do I ask for? Can someone please advise me?

I am so worried mum will die in that awful hospital. Last year she fell and fractured her neck, she spent 4 weeks in there, went in fully continent and walking and was double incontinent and bedbound by the time she was discharged, it has taken us 8 months to get her better, (I don't have faith in this hospital as I know too many people who have been neglected there, it was in special measures for years and now has a 'requires improvement' status)

Just rung the ward to be told by the ward clerk there is no ward manager as they are off sick and all the nurses are unavailable. He then said he could put my mum on the phone to talk to me, I told him mum has advanced Alzheimer's and can not communicate, he said he had no idea of this and when I asked if there was any info about mum on the whiteboard he said there wasn't.

Urgh, I am just going round in circles.

So very sorry for your poor mum and you. The lack of treatment is appalling. All I can suggest is that you get PALs involved.

I think I will have to.

Im not trying to guilt you as I'm sure you're doing as much as you can but honestly be there as much as you can. I don't trust the nhs to look after a vulnerable person at all. I've spent a lot of time in hospital and the lack of care and miscommunication is shocking and extremely dangerous.

I'm so sorry your poor mum is going through this. It is utterly shocking, but also totally unsurprising, I'm afraid. This is how the NHS treats patients these days. It seems that staff think this is ok - certainly you never get any change or any concern when you raise issues. If you have dementia and are unable to hop up and down and demand the bare minimum, you are very vulnerable.

I think you should get on the phone to PALS asap and put a rocket up them. Threaten to speak to the ICB if there isn't a rapid change in approach by the end of today.

Feel so sorry for you and your Mum. Just a really small suggestion in the meantime.. can you write on the board yourself that she has dementia and needs x, y , z?

I’m sorry you are going through this. I know exactly how it feels. My Dad died last month in hospital and my observation is that the NHS is an organisation that has given itself permission to fail on every single level. It was like a war zone when I was there with Dad.

Reading your message it is clear your mum is deteriorating so I wonder if requesting a Martha review might be a good idea. At the very least it’ll mean a dr has to review the case and you might get some answers.

https://www.england.nhs.uk/patient-safety/marthas-rule/

I am there as much as possible but dad is unwell with d&v so can't attend but I am self employed so can't just drop things sadly.

I know its not always possible its not a dig at you at all its a dig at the nhs. ❤️❤️

I'n so sorry to hear about your Dad

Your phrase "the NHS is an organisation that has given itself permission to fail on every single level" really resonated with me. This is exactly it, isn't it. An attitude of it's ok for care to be really poor or non-existent. Nobody on the wards seems to have any sense of pride in doing a good job or empathy for the patients. What used to be an 'it'll do' approach seems to have gone to a 'we're not going to bother at all' approach now. And if you raise concerns with the higher levels they're just resigned to it being poor. It's frightening.

I am finding it so very frightening for my poor mum, I have no faith in this hospital and the care they are giving mum. I just want her out there asap. I am currently looking into respite care homes offering hospital after care but there are all full atm. It is a nightmare situation.

I said to my sister that we should do this today. My sister even filled out a 'This is Me' form yesterday but it looks as though no one has taken any notice of this either. Mum also has a ReSPECTform and DNR but I am concerned they haven't taken this onboard either.

Communication in hospital is dire. My 97 yo fil had end stage heart failure. Tryito get someone who knew anything to speak to me was horrendous and the questions I was asking were too much for the junior team as I had more knowledge than them.
The lady straw came when having stopped treatment because it wasn't working they tried to start it again as he wasn't going downhill as fast as the thought he should.
They said "he said he wanted treatment" but they hadn't told him that it wouldn't work. Eventually I spoke to a more senior doctor and we agreed to stop. He still didn't die for a further 3 weeks.
It really annoys me as I spent a lot of time speaking to relatives in my career it did help a lot.

Thank you so much for that. I am so sorry for your loss.

I have no faith in the NHS anymore, not just for mum's care but how they have treated me too.

I would also recommend that you contact PALS and write on the whiteboard yourself as PPs have suggested.
We have recently been through similar with a very elderly relative and it’s clear that in these situations, you basically have to advocate for your relative every step of the way.

This is exactly how it feels. I sit and watch everyone in the wards looking lost and bewildered, their visitors too and it is as though we dare not stick our heads above the parapet and actually ask for advice or updates, they treat you as though you are asking for the moon. No one seems to take any responsibility anymore.

It is all so frustrating and very depressing. I am sorry for your loss.

I will definitely take our whiteboard pen up there today and just hope someone actually reads it.

I think a lot of the kindness has gone from the NHS and that’s inexcusable

@PatChaunceysFruitCakeThats a wild exaggeration. The doctors I see are working like trojans and not giving themselves permission to fail anyone. They do some times come home feeling they have, however, eg perhaps when there’s also an empty post and a sick post on their ward, and they’ve been run ragged. Look at the commissioner if you need to apportion blame. And most especially the government, who set the strategy and budget.

OP I hope your mother’s position improves. It sounds awful.

This! Take a whiteboard marker with you and write it up that she has dementia, can't communicate and needs help with fluids. But also speak to PALS ASAP and don't hold back in saying how substandard this care is

I'm so sorry for what you're going through. I would suggest you call PALS. (Write if you can too.) You could also call your MP.

You can get special beakers with handles and a spout for drinks. The hospital should provide them.

Take in soups/stews/smoothies etc.

There should be a nurses station or similar near the ward where you can speak to someone.

It's hard but you're going to need to make your presence felt.

And take a picture of what you have written just in case

I would call the ward this morning and ask to speak to the consultant on the ward. I would ask to be present for her physio if possible to ensure she is able to engage in sessions to keep her moving. I would also ask for open visiting if they do not have this in place. It means you can go in any time due to her dementia and needing support with eating and drinking. I would also be inclined to hire a 1:1 carer to sit with her and make sure all her needs are met (toileting, mobilising, encouraging self-feeding, hygiene and to reorietstw her) . This is of course if you have the means. I would recommend you ask the nurse to write on the handover she is to wear hernown clothes everyday. And put a clock and some photos on the table to reorientate her. Take in a white board pen and write on it yourself. Id also go to the matron of the ward and /or PALS. I am a nurse on a geriatric ward and see all too often people deconditioning and deteriorating in hospital

Sympathies. I work in the system and have experienced the same.

This is despite two consultant friends working in that hospital making it known that I was the closest relative, was also a consultant and was unhappy to the consultant in charge of her care. My comms with the medical staff improved but the ward level stuff remained dreadful.

Lack of communication
Failure of institutional memory re information given (ie person has dementia need to involve family with decision making)
Failure to properly assess if person truly understands/ can communicate as assuming they have capacity makes it easier to organise an unsafe discharge as you can cut the annoying relative out of the decision making and put something half assed in place.

I only found out they were planning to a discharge as they phoned to ask me to take shoes in. I strongly suspect if the person had taken their shoes in the admitting ambulance the first I would have heard about the discharge is when the carers phoned to tell me there was no food in the house.