Previous lurker asking for Care assessment comments

New to Carers Connect
1

Hello everyone. I’m 67, have been caring for my mum (89) essentially for the last 10 years (living with her for the last 30 since my father died as at the time it made financial sense. Wrong call). She cannot walk unaided as her balance is non-existent due to a genetic foot deformity so she cannot be left for fear of falling. I had to be behind her at all times. In addition her hearing is bad and she has limited sight through ARMD in both eyes. The house is in joint names. I work from home to enable me to look after her as basically she can do nothing herself now. This means I have to start work at 6am in order to put the hours in each day to allow for getting breakfast, lunch etc. Essentially I have been confined to the house most of the time since she had a stroke 3 years ago. I’m at the end of my tether but I don’t have to explain that to anyone here unfortunately :face_with_head_bandage: so won’t go on.

She is in hospital now but is slated for discharge. She has been assessed as requiring 4 half hour visits a day and nothing else. They have said that that is all she needs - even if I was not living in the house when I said that they were obviously assuming I would carry on and pick up the slack. Whereas before she could walk to the loo with her trolley (and me in tow) that is now out of the question. And she is now incontenent.

My query is how is 4 visits considered safe for someone who cannot move or see enough to even put the radio on/change TV channels/let alone see who is coming into the house? An “independent” existence?? How can a care assessment be made in hospital when they have no idea of the facilities in the house? She’s transferring in hospital with 2 Carers and a “Steady” so If they are thinking of sending one of those out …well I had to take the bathroom door off to let the trolley in so there’s no way one a “Steady” will go in… And there’s not much room in there…is she just to have a strip wash in the front room then???

I am torn between a carehome but she has to agree as she has capacity, or trying to continue as before and topping up the care. She has savings which would last almost a year for care home fees but I have been told that the care fees might not be paid after that and she could then be sent home with the care package.

At present she is putting off making a decision and I’m pretty certain that she doesn’t understand that if she comes home she will only be moved from bed to chair to commode and back. That will be it - Previous outings and Day Centre attendance as before are going to be impossible as I am unlikely to be able to manhandle her into the car now. So I will not even have the breaks I had before.

Sorry for the length. I have picked up quite a few tips in my previous lurking :blush: and sometimes wondered what I was moaning about compared to what others have to cope with. You’re all amazing!

Ann

2

Hi Ann
Lurking is good. Most of us lurked before plunging in : :smiley:
Start by remembering the phrase ‘unsafe discharge’ and be prepared to quote it at anybody discussing Mums discharge. That should buy you enough time to ensure the discharge procedures are followed fully and thoroughly. It sounds like they have identified you as a competent and always available carer, a godsend in their eyes BUT you are ( or will become) an informed and knowledgeable carer (or non-compliant in their terms).

Yes they would love to discharge her that way, and do to many and yes it is scandal and a disgrace.

Am sure other posters will be along with the details but search discharge, reenablement and chc and start your learning. You are not alone and you are going to fight to get the best possible care package for her, and for you.

Kr
MrsA

3

Welcome to the forum Ann but sorry to hear about what you are coping with.

Take a read of the information on this link, about discharges from hospital. It explains various options open to you and how to go about it. Take note of requesting a carers assessment in your own right too.
https://www.carersuk.org/help-and-advice/practical-support/coming-out-of-hospital

As much as you will want this sorted, please don’t allow any pressure to be placed on you. All of us here realise how difficult it is when our Loved ones are in hospital, but just now that is actually a position of strength for you. As suggested by Mrs A, make enquiries to your mams ward about them doing a Continuing Health Care check. These are all best done when someone is still in hospital. If you bring your mam home too soon the wheels don’t usually turn as quickly as they expect family carers to continue coping.

Have you and your mam spoke about the options Ann? I know you have said that she can’t make decisions just now, but it must be a frightening issue for her to face.

Has she been assessed regarding her incontinence and decision made about how many pads etc she would be entitled too?

What about you Ann?.. what is it you want to happen. These are difficult choices for you too. Many members on the forum have been through this and will be more facing it in the future.

Has your mam ever tried a few weeks respite?

How is your own health Ann? If mam does come home do you feel able to continue coping?

Please don’t feel like you need answer the questions above. I only posted them to try help you cover some of the bases.

If you have a local carers group, Age UK office, they can sometimes assist with advocacy. CarersUK have a helpline no too and we can provide it if you want it.

Again, as suggested by Mrs A previously, use this time to gather as much info as possible, get to know your own rights as well as those for your mam. The better prepared and armed you are, the more chance you have of getting a satisfactory outcome. Only time will tell if it works long term but if not, back to the drawing board so to speak and try an alternative.

Which ever the direction you and your mam take, please continue to use the forum and keep us posted. So many members have gone through this, and although what works for one family may not work for another, most of the feelings felt are the same. You will get real empathy and support here, never judged. What is the old saying… " Walk a mile in my shoes or live a day in my life" . Us Geordies normally add a different ending of… "Till then, shut it " :astonished: :laughing: :stuck_out_tongue:

Good luck

Rosemary

x x

4

CHC / Hospital Discharges ?

Main thread :
https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998

5

Thanks both. I had a Carers assessment about 3 years ago from which I eventually got 3 hours help a fortnight 6 months ago. We privately employed a care agency to get mum up and dressed 4 mornings a week following a fall which resulted in her breaking her neck. They picked up when the reablement team stopped. Otherwise she seems to be built of rubber!

She has been assessed now for incontinence and will have 4 pads a day as far as I can see. CHC has been refused as she does not have mental, behavioural or any other physical issues apart from not being able to move or stand without help and the usual short term memory loss. At the moment I have refused to sign that as I disagree with one of the judgements on mobility. She has been given virtually all As on the form (I assume it’s a standard form and you’ll know what I’m talking about) so that doesn’t affect the outcome but have learnt enough to know that “give em an inch and they’ll take a mile”.

At present mum is ducking the issue by saying she “has to think about it” so in a way that buys more time for me too (cheers mum!) although she is just not grasping what the situation will be when she is home.

While I rail against the fact that many single elderly are now left to their own devices I’m concerned that in my mother’s case she cannot move, see or hear and is to be left alone in the house (taking me out of the equation as they say the same would happen if I wasn’t here) for 22 hours a day 7 days a week. How is that safe - maybe I’ll ask the RSPCA to step in??? I can’t change her on my own and know this as before she went into hospital the GP got emergency reablement cover for the weekend and the first night only 1 could come so she relied on my help and said over and over “there’s no way you could do this on your own “.

Really I know that I can’t keep putting my life on hold too much longer - already in tears most days, go without sleep and often end up shouting at her- but I just feel desperately sorry for her and want to do all I can to mitigate her situation if possible. I arranged a weeks respite last October which was not ideal but wonder whether having her back home with more help and regular respite might be a temporary answer. Or is that asking for trouble and me ducking the issue as well? I’m acutely aware this is my time of maximum leverage after going through several other hospital spells and follow ups.

Sorry for going on again :scream:

Ann

6

CHC refused ?

A refusal is NOT for life !

Appealed ?

NHS Continuing Healthcare / NHS Nursing Funded Care are also options.

Considered ?

Main thread again.

7

Is she aware that going home would involve sitting in her own poo, possibly for hours until the next carers came? For my mum, this was the deciding factor in moving into residential care.
Are you worried about the house having to be sold to pay for care? In your situation, as it’s in joint names, I don’t think that applies, so she would only pay out of HER INCOME & SAVINGS ONLY, but do check wit a solicitor if possible, about the house being disregarded. How old are you? If you are over 60, because you live there, it would be disregarded anyhow.
From now on, mum is only going to get even worse, never better, so surely now is a good time to make that final move, rather than go in and out of hospital like a Yo Yo (as my mum did for 10 years or so)?

8

Hello bb

That’s what finally made me realise that a home discharge was out of the question for her quality of life. I know and rail against the whole results of the austerity programme but am still shocked that anyone is prepared to put another human being in that situation. The problem is that I cannot get that through to her and she seems to have disengaged from the whole process. That is different from before she went into hospital- but then every time she goes into hospital she comes out a bit worse.

I’m 67 so have no worries about the house situation thank god. I had a long conversation about that and about a joint savings account we had for house issues with an Age UK advisor. He put my mind at rest. The reablement team leader had previously tried to say that the joint account would be completely taken into account even though I could prove that most of the money had come from me. Social services have not raised the issue so far but I’m prepared to fight. Just hope the Government do not try to change the law again.

The only issue is that the Care navigator (where do they get these titles?) has warned me that her savings will last about a year and after that there is no guarantee that funding would kick in and she could be sent back home. I don’t think that would happen but the thought is still there now.

Ann

9

If they did their jobs properly rather than wsting time inventing stupid titles things would be a lot better.
If the account is in joint names, then I’d be emptying that account and transferring it to one in my name only, especially as most of the money was originally yours.
I don’t think there is anything they can do to stop you doing this, but please check. (We have a former banker in our midst, I’m sure he will comment).

10

Just to update - mum has said she wants to come home. As they have ascertained that she has capacity there isn’t anything I can do to stop her. Going to try again with a nurse to try and make her see that life will not be the same as before. At present it looks like we will be adding a Steady to our home collection :worried:
Going to try and see if I can find a space in a Care home and suggest she needs “convalescence” for a couple of weeks as temporary solution.

Starting having Carers in again on increased basis is proving difficult to source as they are all stretched. The only good thing from that is that she can’t be discharged without the so-called care package in place.

Ann

11

Hospital discharge ?

Under the main CHC / Nhs Continuing Healthcare thread near to the top :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-pointon-ruling-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-here-35998

**_HOSPITAL DISCHARGES … THE BIBLE :

https://www.nhs.uk/using-the-nhs/nhs-se … -hospital/

IN SHORT … BY THE BOOK OR NO DISCHARGE !!!_**

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Hi Chris - looked into the discharge process from previous links. I’m still fighting but meanwhile to let you know that link no longer works. All I can find so far on the nhs site is this

Which is pretty useless as it gives no deatails. I’ll keep looking.

Ann

13

Thanks Ann … the NHS have removed that page , new one as follows :

Being discharged from hospital - NHS

I haven’t read it yet … I hope it’s as comprehensive as it’s predecessor ?

If not , the AGE UK guidance on hospital discharges may well be promoted to the number one link I use !

14

No, not as comprehensive. It and the associated links give no specifications. For instance, one link talks about complex and minimal discharges but fails to explain the difference:

“If the assessment determines you will need little or no care, this is called a minimal discharge. But if you need more specialised care after you leave hospital, your discharge or transfer procedure is referred to as a complex discharge.”

AgeUK is still much better but it would be good to know where to find the explanation of the discharge contents listed by AgeUK.

Been trawling through the legislation can’t pinpoint it
The Care and Support (Assessment) Regulations 2014

The Care and Support (Discharge of Hospital Patients) Regulations 2014

Ann

15

Hi Ann … the specific Factsheets as so issued by AGE UK ?

Main link I am now viewing … list at the bottom of that web page ?

https://www.ageuk.org.uk/information-advice/health-wellbeing/health-services/leaving-hospital/

The " Heavier " 30 page guide in .pdf format is more like the original NHS Hospital Discharge site.

Factsheet 37 :

https://www.ageuk.org.uk/globalassets/age-uk/documents/factsheets/fs37_hospital_discharge_fcs.pdf

Thinking aloud , I wonder if the NHS pulled that link as so many discharges were going wrong … and someone high up did not want further embarrassment ?

Even stranger things have been known to happen in CarerLand ?

Complex v. Minimal discharges :

https://www.caresourcer.com/caresupport/understanding-care/discharge-from-hospital/

Also , the origial NHS link does contain a section on the difference :
__

What is meant by minimal or complex discharge?

If the assessment determines you will need little or no care, this is called a minimal discharge. But if you need more specialised care after you leave hospital, your discharge or transfer procedure is referred to as a complex discharge.

If you need this type of care, you will receive a care plan detailing your health and social care needs. You should be fully involved in this process.

A care plan should include details of:

the treatment and support you will get when discharged.
who will be responsible for providing support and how to contact them.
when and how often support will be provided.
how the support will be monitored and reviewed.
the name of the person co-ordinating the care plan.
who to contact if there’s an emergency or things don’t work as they should.
information about any charges that will need to be paid (if applicable).

I need to have a look at this on the basis that the orginal " Bible " is no more.

16

Hi Ann
If common sense (and all other efforts) can’t stop Mum being discharged home (and that often happens, it’s difficult to stop a steam roller single handed) then you might have to go through the angst of a ‘failed discharge’. That’s where she falls, or deteriorates quickly and gets readmitted . It’s a difficult one for loving relatives as we feel we have to do our best, but doing our best covers up the failings of the system, so we have to decide how we manage the balance between letting them cope (and fail) with only the provided care package, or how far we step in to help/cover up.
The benefits of a failed discharge are they they would be less likely to return her home next time, and less the time after etc

Am I right in thinking Mum would be self funding for about a year?

Kr
MrsA

17

Hello Mrs A
You are right although I went to see a care home yesterday which is popular - small but quiet, just right for my mum, bit old fashioned but the staff have been there for over 20 years in some cases - and cheaper than any others I’ve seen so funding would last for longer. As you might guess they have a waiting list but do day care so things didn’t seem so bad at 3.30 this morning :thinking:

However just back from the hospital and she’s not engaging with me. I probably made a mistake by showing my frustration a couple of days ago. It’s all a roller coaster ride.

I’m torn between letting her come home and having a failed discharge on the basis that this is her decision or trying to do my best for her.

As an aside, reading all the stuff about discharges I would say the procedure hasn’t properly been followed in any previous ones. I’m not aware we ever had a discharge plan and the GP wasn’t even told that she had been in hospital for 6 weeks with a broken neck last time. This was apparently common according to him.

Ann

18

__

As an aside, reading all the stuff about discharges I would say the procedure hasn’t properly been followed in any previous ones. I’m not aware we ever had a discharge plan and the GP wasn’t even told that she had been in hospital for 6 weeks with a broken neck last time. This was apparently common according to him.

Hi Ann … time for that " Not by the book , NO discharge " recommendation to be acted apon ?

The hospital MUST also follow the same guidelines !!!

If they deviate from them , they are , potentially , leaving themselves wide open to a formal complaint … let alone the potential damage to the health and well being of the patient … your mother !

Perhaps time to call in the calvary … the local PALS team ?

__

This was apparently common according to him.

WHY has he not reported said hospital to the authorities ( Rhetorical ! ) … ???

A " Duty of care " to others who have suffered the same fate ???

He knew there were problems … but did nothing ?

19

Several times, I’ve skipped all the usual complaints process and asked to speak to the CEO, put through to his PA, who very quickly sorted things out.
Especially when mum was going to be discharged after a carpal tunnel op with her arm in a sling, but only able to walk if using a Zimmer frame!!
The sister at the hospital told me that I HAD TO look after mum when I already had a weekend away planned with my son with LD, and the previous day I’d had father in law sleeping over at my place after a colonoscopy to confirm bowel cancer!!

20

Update - mum now changed her mind and going into care home today for month’s “trial”. Slightly twitchy about what happens when her money runs out in about 10 months time assuming she stays but cross that bridge when we come to it. After all she might still insist on coming home after the month.

Sorely tempted to go to MP re the care needs assessment done in hospital leaving mum with 4 quick visits a day and left alone for 22 hours when nearly blind and deaf and with no mobility without help. As he’s Labour he can only agree and do little but at least he has the info and it might make me feel as tho I’ve done something for all those people out there struggling to get help.

Ann