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Mum deteriorated in hospital-part 2 - Carers UK Forum

Mum deteriorated in hospital-part 2

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Hi there everyone,
A little back ground on mum, she is late dementia most likely stage 6 she has full heart block and has terminal breast cancer also insulin injection for diabetics, so really not a well lady. But she is still fully Mobil around her home 70% incontinence. Myself and sister are her main carers.

I feel I’m getting no answers from either doctor or OH at the hospital. Mum went to A&E 5 weeks ago because she fell at home, not injured herself but the carer had rang an ambulance so they had to take her to make sure she was ok, as she did express pain when they picked her up. On arrival she tested positive for COVID even though she sis not display any symptoms, so my sister was told to leave the hospital straight away. Therefore, having to leave mum on her own, mum does not communicate and she is in her own little world of chat. Then late on that evening get a call to say come and collect her as she has no medical needs. Found mum 12 hours still on a trolley on the corridor very dehydrated, only had one cup of tea and no food in those 12 hours. I could not wait to take her home, but she was in so much pain when I tried to get her to sit up. So I asked the doctor if she had been X-ray, but no she had not. So I was told she could not go home until this had been done. But now I think she was in pain because she had been left on that trolley along with no fluids that she was just stiff as her x ray showed no injures.
So for the next week got so many phone calls from the hospital asking for us to take mum home, but she was not Mobil so how could we. She had just been left on her bed for over a week. The hospital then realised even though I told them so many times mum was fully mobile at home before hospital. They then tried to get mum mobile but mum does not 7nderstand any form of instruction so this was proving difficult so eventually they asked us to go in and assist them with this even though there is a blanket band on relatives going into hospital. So in I went onto a COVID ward to assist, but mum could not even stand up let alone walk. I asked how often she was given physio and was astonished to find out out maybe three times a week. So needless to say I two days later I contracted COVID. So couple weeks go by cannot get through to ward at all to find out how mum is doing just don’t answer the phones. Now 5 weeks in and now she is not eating or drinking constantly on and off drips, now we are asked to go in and help feed her. All this going on and still get asked what we need in place to get her home
She clearly will now be bed bound and we do not know how to care for her like this, so I replied apart from obvious things like bed guards, mattress, camode, proper chair but most of all training.

But now the doctors are asking us if we are making the right decision in putting things in place to get her home and asking a lot of what if this happens what if that happens if she deteriorated would we re admit her or if she is end of life would we want her in a hospice. But not person has told us if she is at end of life or if she will only survive if she keeps getting rehydrated.
We really want mum to come home but we are in so much fear if she is being sent home to pass away and worry so much about pain relief for her. Having been in the system for many years I know what ever you need for someone you are for is a battle and time consuming effort and I fear the response would not be quick enough for mums sake. I have asked about a hospice but the doctors feel mum is not at this stage yet also mentioned the waiting list is so long. Then enquired about continuing health care but no not possible. I feel she should be able to get at least one of things as to be honest mum has reached this point I feel because she has not had the care she needs whilst being in hospital.
Even just simple things like mum will not drink water only juice I told juice into hospital and told the staff at least times to give her juice it’s the only thing she will drink, but no not even this has been done still giving her water. Told them of mums eating habits and sweet treats like dessert but no she is a dieabetic so she is not aloud. So they would rather not give a very sick lady who is terminal what she eats, therefore she has now stopped eating altogether and it’s as if she does not know how too anymore, but before hospital she was eating with a knife and fork.
I don’t really want to play the blame card but I do question all of what has happened.
Any advise would be much appreciated on how I can get some straight answers.
Tomorrow morning, ring the hospital, ask to speak to the CEO.
You will be put through to a PA, explain that you wish to make a very serious formal complaint about mum's care up until now, and say that her care needs to be improved IMMEDIATELY. This has worked for me.
You should not need to be called in to feed mum, this isn't a third world country. Staff are paid to feed patients!
Keep a diary of who you speak to, name, date, time.
Insist that mum has an NHS Continuing Healthcare Checklist done.
This is a formal procedure (look up Continuing Healthcare Framework Checklist Assessment).
This would enable mum to have funding for a nursing home OR CARE AT HOME.
What a truly dreadful situation. She has been failed miserably by the hospital.

In addition to BB’s advice, I also suggest you contact PALS and ask for the dementia nurse/champion to be in touch with you and to be involved in your Mum’s care until such time as she comes out of hospital.

The CHC Assessment process should involve written reports and a meeting.
It's unbelievable that they are talking about palliative care but still say that she isn't entitled to CHC!
I found when mum was ill that the staff thought they knew all about CHC just because it was on their computer, they'd never even read it properly.
I ended up printing the whole Framework off and going through it with a highlighter pen.
At that time I still had a commercial standard laser printer, so printing it off only took a few minutes.
At mum's meeting I quoted parts of it referring to page number section, and paragraph. They were stunned.
I also wrote my own agenda, printed off a copy for all concerned, and said at the meeting "these are the things I want to discuss".
Stunned again.
You can take control of the meeting, but will need to be very brave.
Don't let them keep using abbreviations and jargon. Tell them it's not appropriate when members of the public are attending, and each time they do it, interrupt and ask them what they are talking about. It makes them look very silly!
Hi Sharon

So sorry to read your post have you tried ...

https://www.dementiauk.org/get-support/ ... 0hospitals.

As BB has mentioned the nurse may well be attached to the hospital.
Thank you so much everyone for your replies and some very useful information. So I’ve seen the doctor today they say mum is not at end of life. So she has not eaten anything for well over two weeks but she has about 50ml to 100ml of fluid a day so she is basically ticking over she will never recovery from the deterioration. She is heading towards end of life but not yet there. Doctors say no medical care is needed it’s more nursing care because if her dementia. I have been contact to discuss application for funding for her care so from hospital straight into nursing home she gets 4 weeks funded by nhs for assessment on her needs then decision is made if she gets funding or not. It’s a minefield, I’ve been told because we cannot give her 24/7 care at home even though family sleep over night and mum gets 6 hours day from myself and sister and she will now be bed ridden, this is not enough but I don’t get it because I know she will be left in her room no one will sit with her 24/7 just keep popping in to check in her but this is enough and for the privilege of this it will most likely cost her £1200 per week I just don’t get it. But what can we do, so I imagine the next few weeks will be full off meetings and such like but I will be pushing for funding. As we are being forced not to let her come home
I will send updates as they come
Thank you everyone advised taken on board
You must be more "pushy" and insist on an NHS Continuing Healthcare Assessment, it's NOT just for end of life care!
https://www.ageuk.org.uk/globalassets/a ... re_fcs.pdf

This factsheet explains what NHS Continuing Healthcare is; how the
NHS decides whether you are eligible for it, and what to do if unhappy
with an eligibility decision. It explains the effect of Covid-19 pandemic on
undertaking assessments, particularly when involving hospital discharge.
It explains NHS-funded nursing care – a weekly payment NHS makes to
nursing homes towards their costs of providing nursing care to residents.
The following factsheets may be of interest:
6 Finding care at home
10 Paying for permanent residential care
22 Arranging for others to make decisions on your behalf
37 Hospital discharge
38 Property and paying for residential care
39 Paying for care in a care home if you have a partner
41 How to get care and support
76 Intermediate care and reablement
Hi there
Thank you for all your advise and support for mum.
I have now found out mum is on the fast track pathway, my understanding is that chic will be granted automatically but I am not too sure if this is for the four week assessment or will be put in place for the time she is in nursing care can anyone advise me on this please
This is great news, mum should have all her costs paid unless she gets better. Make sure you get a copy of their assessment!