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.
Sharon,
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!
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
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
The Fast Track pathway avoids the need for the usual assessment process and would actually mean that the funding would be agreed without needing the four week assessment period. So there will be no bills for her to pay.
There’s no easy way to say this but you need to know…
It’s only used in situations where the patient is deteriorating - not taking nutrition and limiting her fluid intake would be a major indicator of this - and expected to be entering a “terminal phase” soon. So the process is changed for those individuals to remove the stress on them and on their family at a time when they can well do without it. End of life - which is what they mean by “terminal phase” - is where someone is expected to die within a three month timeframe. Your Mum isn’t there yet but the fact that they are looking at the Fast Track means that they think it may not be very long in coming.
Well another change today, no wonder my head is in bits, not only have the worry for mums care whilst in hospital but now have to spend time finding out what’s right and what’s wrong with what I get told.
So occupational health at the hospital tell me mum is being fast tracked the doctors tell me mum is being fast tracked, the ward manager only yesterday told me mum is being fast tracked and went through everything with me and put all her cards on the table regarding health. I went on nhs.gov website last night where it clearly tells me someone in mums condition is fast tracked.
So today I get a call from chc who tell me mum is not being fast tracked and the hospital basically don’t know the up to date information. Not only that now I’ve been told that there are available homes for mum all of which are in the borough of Salford because that is mums borough but are all miles away from where we live. Not only that we are not able to visit any of them or get to choose which one we are happy with, I’ve been online and let me tell you one of them is a definite no chance the other two one looks great but the other very questionable. The information I can get on either is very limited and I am surprised at the lack of reviews for any of them the most being 18 one doesn’t even have a website.
Then I get told a assessment will be done within the four weeks that will be funded but there is a chance the costs may not be covered after that depending on the outcome.
Does anyone have any recommendations of who can help me this this whole process just does not sound right or fair to me.
Have a look at the CHC Framework which talks about Human Rights, especially the right to a normal family life. Mum has a RIGHT to be in her own area so that she can see friends and family.
I used this when mum’s hospital wanted to send her to a home the far side of Southampton from me. A computer search on a distance basis clearly didn’t take into consideration the fact that Southampton Water was between me and the home!!
Update on mums situation, after 7 weeks in hospital she is finally coming home. Well I’m sure you are all as mistified as I am. So I took the advise of you guys and had a best interest meeting, notes in hand.
We all came to a dead lock because even though being told mum was not allowed home because we could only provide 18 of care and 24 /7 which they felt she need, we would not except the awful care homes they where going to put me in. So as the hospital wanted their bed back 360 degree turn around, so mum has just spent 3 weeks in hospital for absolutely no reason.
Anyway she is suppose to come home on Thursday this week, but again failings, as her hospital bed cannot be delivered for Thursday so everyone has now had to change what has been arranged for Thursday including district nurses.
I just pray she gets home on Friday, where we can give her the love and care she needs in her last days.
Thank you guys so much for all your support through out this very frustrating and upsetting time.
I have previously posts regarding mums situation whilst in hospital. This all started in January and after a stay of 8 weeks mum finally came home. But sadly after four days had to go into A&E because she rolled off her bed. She was checked over by the ambulance paramedics and was fine other than a slight bump on her head which they wanted to check over, but other than that no damaged caused. Went into A&E at 7am on 9th March 2022 at 10am received a call from them telling me that mum had gone head first of the trolley and smashed her face and broken her 4th vertebrate. She is still in hospital and no treatment can be given because of her dementia. Now they tell us mum has to go into a nursing home no choice to come home. But after almost two months, sending support plans out to all nursing homes across Salford and Trafford only one home will take her and it’s the biggest dump ever. I did myself find one with available beds in urmston that would take mum but once they received the support plan, which by the way I am not able to see said no along with all the rest. So eventually without saying too much I found out the reason everyone was saying no this was because mums support plan said she needed one to one 24 hour care. And they still will not say if she gets chc funded until I put mum in a nursing home which when I visited can you believe I was informed by the manager that after explaining mums accident in A&E tole me that if mum was to pass away within 6 months of the accident she would have to have a post mortam who does that, I was horrified as I always was reassured this would not be the case because she carries a statement of intent. This is the only nursing home that will take mum. For the privilege of this if she does not get funded by chc which by the way is £700 per week with a top up of £50 which they want me to pay, the cost then to mum self funding rises to £1106 per week so if you have nothing it’s 750 but if you have a house which you have worked to get all your life to be able to leave your kids a little something they will have that thank you very much and increase your payments by £350 per week for a home you would not even put your dog in. But after fighting chc and social care I give up, I’m exhausted with it all at a time my mum is
dying o sorry chc say she is not actively dying but on a slow decline. I GIVE UP.
It sounds like you have been given so much awful information.
If mum fell off the trolley in hospital, then the hospital have been negligent, and the hospital must ensure that mum’s care is suitable and appropriate, the hospital must pay.
There is absolutely NO QUESTION of you or mum paying towards her care - £750 a week is really cheap, a nursing home here is £10000 plus a week by the way.
I would suggest that you contact a medical negligence lawyer as soon as possible.
In the meantime, look at the CQC list of nursing homes as near to your home as possible. Visit the nearest one to you, and then work your way out to those a bit further away.
I would ring the CEO’s office, and say that they MUST sort out mum’s ongoing care asap. Even threaten them with going to the press.
Hi bowlingbun, thank you for you reply. £750 per week if so pay but if self funding £1100 per week, is that right you have put £10000 per week we’re you are or a typo?
Trust me we have tried two borough’s to find mum a home but no one will except her apart from the one I mentioned.
I have a formal complaint against the hospital and the cqc have 15 failings in total they want reports for but the A&E accident is more investigation so much so once report completed goes in front of panel.
I don’t really want to make a claim against the nhs but your right they should carry the response ability of covering the nursing home cost because due to them she now has to go into one. I am awaiting reports coming back first to see what that outcome is.
Yes, one thousand plus. Oooops!
Mum should be assessed for NHS Continuing Healthcare, I find it inexcusable that they haven’t done that already. Good that CQC are investigating now, a very serious situation yet still ongoing and causing you untold stress in the process.