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Please tell us about your experiences of hospital discharge - Page 6 - Carers UK Forum

Please tell us about your experiences of hospital discharge

Share information, support and advice on all aspects of caring.
102 posts
He isn't receiving any treatment pain relief only, at present he is mobile and able to attend to most things for himself all be it he wont eat etc because he forgets. He had a stint in respite at a care home and it was the saddest place on earth I wont do that to him, maybe one day that will be our only option and I'll have too reconsider. I'm not delusional, I just think while he can voice his desire I will do my utmost to facilitate it. I am quite fit and healthy 49 year old so I can manage the drive without crashing and hopefully wont suffer a stroke or heart attack anytime soon, but no one can predict or control that. I have on speaking to his doctor agreed to a DNACPR as I think it would be unkind to jump up and down on the chest of a terminally ill person.
He was actually given 6 weeks......before Christmas! its crazy because he doesn't even want to live he wants to be with my Mum. So I don't know how he keeps going, so taking time from work is difficult to ensure the timing is right.
Ironically I actually work for the NHS and they haven't even given me one days carers leave, or in fact compassionate leave over the last 3 years of my Mum dying and now my Dad. I have used my holidays, time in lieu or working extra hours/ days, unpaid leave and went sick when I lost my Mum.
For now ( the past week and half) he has a live in carer, my stress levels have halved he is feed real food not microwave gunk, he has someone to talk too and to look out for him, get him to go to bed on a night and get up the next morning, take a shower, just live a bit normal for however long he has left. I will be fighting tooth and nail to keep her if heaven forbid he gets put back onto social care as only CHC pay full time carers.
It's absolutely enraging that the NHS is such an appalling employer, and really rams home, doesn't it, how 'on their knees' the bloody service is for being SO underfunded (AND the use of the money is SO bad - believe me, I know how much money is wasted inside the NHS on incredibly stupid projects that have sod all to do with patients and everything to do with just Cr*p) (my wonderful cancer manager at our local trust says if she ONLY had the money that is allocated to stupid waste-of-time 'regional structures' she would go down on her knees in gratitude, and I know myself that as a former cancer carer how much garbage is conducted on holding stupid 'volunteer guidance' seminars etc etc - and that's even before we come on to the nightmare of pointless paperwork and bureaucracy etc etc)

However, that apart, (!), it sounds like the live-in-carer is really working out and I do hope that can continue.

As you say, the focus has to be on your father having the best QoL at this stage, despite what he is up against. One of the 'problems' I think of dementia alas is that it kind of sets the physical body on 'automatic' and so the patient is unable to #turn their face to the wall' which so many who have no will to live any more can do.

My poor wretched MIL is still on 'automatic clinging to life' mode as if it is an 'animal instinct' almost, despite the dire, dire straits she is in now. I really do believe that if the 'real her' could see just what the vile dementia has reduced her to, she would immediately 'turn her face to the wall'.....

I hope your father - and you, now can have a slightly easier time of it, and I do understand his, and your, wish and hope that he leaves this life in his own home, and joins the wife who has 'gone before'.....and, who knows, maybe just maybe there is a 'together again' waiting for us all (we can but hope....)
Thanks Jenny I did feel a little under sedge there after my first post. All I can do as the only daughter of two fantastic parents who have been dealt really rubbish hands in the last chapter of their lives, is the best I can by them. My Mum always thought she would dye young as her mother did and always made me promise if she did get old and needed caring for. I had to put her in a home. She said I didn't bring you up to then have to be my Mother! She ended up suffering a catastrophic stroke which I prayed (I'm not religious at all) she wouldn't survive because it was so bad. And she would only have survived not lived, she would not have wanted that. She waited for me to drive to her so that I could say my good byes and tell her she could leave us, of that I am more than sure! My Dad is a different story, Mum although a tiny little person in statue was the person doing the looking after. I always knew this and hoped Dad would go first. Sounds horrid when you say it out load but I knew he would struggle without her and she would just get on with whatever was needed. I do hope he has a peaceful end in the home he loved my Mum in, I hope there is more after death and that they are together again even if its only a forever dream you dream in death. I hope I don't get as angry and sad as some of the people on here. No disrespect to anyone I am sure you have been hurt and rung out immensely. Thank you for your comments be them helpful in my eyes or not. I will carry on as they say hoping for the best being ready for the worse and wish you all the best, I don't think this forum is for me.
Ceren - don't leave! What is it that has upset you?

Remember, we ALL have our 'wounds' here, and some folks are a lot fresher than others', alas. Mine are pretty minor now - my poor MIL with deep dementia is in a care home, utterly helpless, and I pray nightly for her release. Like your parents, she didn't 'deserve' to end up this way, on top of being widowed herself 30 years ago, and the tragedy of losing her older son (my husband) to cancer some years ago,and her younger son living in the USA. Had she died at 89 it would have been a blessing, but now she is ekeing out her sad, sad, sad existence in a care home ....such a miserable end for her (when it finally does come)

But in terms of my 'stress levels' from caring, they are now minimal - I pay her fees from her account, and visit from time to time (very brief now, she sleeps most of the time and barely recognises me).

I hope your dad does NOT have to go back into hospital. They are 'no place to die' - unless it comes as part of a crash-crisis etc, and is all 'over and done with' very quickly. It's wonderful your mum managed to hang on long enough for you to say your goodbyes....that is a real gift that she gave you, and a comfort too.

If you do want to 'bow out' of the forum, do feel entirely free just to 'reappear' if you wish, at any time. That happens with quite a few members. We all have our different care-stories, but in many ways, caring for another human being, whether child/adult/spouse/parent/grandparent, 'caring itself' is the same in many respects - that sense of responsibility for the wellbeing - as much as possible - of another human being that we love and want the best for.
PS - when I said about the bureaucracy etc in the NHS the problem is not that it exists, but that it exists INSTEAD of adequate medical funding! If there were enough medical/support staff, enough wards/beds, enough diagnostic kit, etc etc, then all the 'superstructure' would be no problem at all!
For any readers still waiting for the outcome of Carers UK findings , a link to Parliamentary reports ... published in 2016 ... on unsafe hospital discharges , and the recommendations then proposed.

Quite a bit to digest :

https://www.parliament.uk/business/comm ... tal-15-16/

Just a few headlines from the past WEEK to add a little more fuel to this thread :

Merseyside hospital trust sees 160 more deaths than expected in a year.

Hundreds more hospital deaths than expected - and it's ringing alarm bells over care

Sandwell and West Birmingham Hospitals NHS Trust saw 2,137 deaths in 2017.

Social worker suspended for six months over ‘unsafe’ hospital discharge of elderly man.

Experienced practitioner failed to assess elderly man's needs or provide evidence of a care plan, leaving him at risk of harm, panel finds.

Over to Carers UK ... you started all this !
In case any reader is in doubt as to the " Correct proceedures " in discharging patients from the care of the NHS , the following IS THE BIBLE :

https://www.nhs.uk/conditions/social-ca ... arge-care/

Your care after discharge from hospital.

If you go into hospital, you may be worried about whether you'll cope when you leave.

You shouldn’t be sent home until:

agreed support is in place
services are ready to start
any home adaptations have been made
appropriate equipment has been delivered or installed

Before you go into hospital

If you're due to go into hospital, planning for what happens afterwards should happen before you arrive.

For unplanned hospital stays, for instance if you've had a fall and hurt yourself, discharge planning should begin on the day you're admitted.

You'll usually be given an estimated date of discharge within 24 to 48 hours of being admitted to hospital. Your progress will be reviewed and, if there’s likely to be a change to your discharge date, you should be kept updated. Read more about what happens after surgery.

The person co-ordinating your discharge should be available each day, and you should be given their name and details of how to contact them. They're sometimes called "discharge co-ordinators" or "ward co-ordinators".
Hospital discharge assessments

A discharge assessment looks at the needs you are likely to have when you're discharged or transferred from hospital.

If you're eligible for help, staff will make sure support, services and any home adaptations are ready for you before you are sent home.

You should be fully involved in the discharge assessment, and your views should be listened to. With your permission, any family carers will also be kept informed and given the opportunity to contribute.

If you would like help putting your views across, an independent advocate (for example, from a charity such as Age UK) may be able to help.

Will I have home support ?

A care plan will be drawn up, detailing the health and social care support you need after you leave hospital. You should be fully involved in making this plan. The care plan should include details of:

the treatment and support you will get when you're 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 who is co-ordinating the care plan
who to contact if there's an emergency or if things don't work as they should
information about any charges (if applicable)

How will hospital staff prepare me for discharge ?

Before you leave the hospital, the member of staff responsible for your discharge should make sure:

you have clothes to go home in, money and front door keys
there's someone collecting you, or a taxi or hospital transport has been booked
you (and a carer if you have one) have a copy of your care plan
you and/or your carer understand any new medicines you've been given and you have a supply to take home
you've been shown how to use any equipment, aids or adaptations you need
you have incontinence products if you need them
your GP knows about your discharge and any help you need from a district nurse has been arranged

If you're being discharged to a care home, the care home should also be told the date and time of your discharge, and have a copy of your care plan.

What happens when I get home from hospital?

If you go home and support has been arranged for you, social services must check it’s still right for you within a reasonable time frame. After this, your care plan should be reviewed at least once a year or more often if needed.

If, at any time, you find that the support services aren’t suitable, you should contact social services and ask for a review of your care plan.

If there’s a possibility of you going to live in a care home permanently after a stay in hospital, ask about intermediate care or re-ablement services. They could allow you to make as full a recovery as possible before making such a decision.
Intermediate care and reablement

Intermediate care is short-term care that's provided free if you no longer need to be in hospital but you may need extra support to help your recovery. It lasts for up to six weeks and can be provided in your home or in a residential setting. Intermediate care is sometimes called reablement.

When your period of intermediate care or re-ablement finishes, you’ll be assessed to see whether you need any ongoing social care or NHS support

Carers and hospital discharge

If someone you know is in hospital and about to be discharged, don't feel under pressure to accept a caring role or take on more than you're already doing.

You need time to consider whether or not this is what you want or are able to do. If necessary, ask for other arrangements to be made while you're reaching a decision.

If you decide that you're going to care for the person who is being discharged from hospital, you're entitled to your own carer's assessment from social services.
After discharge from hospital

Your care should be monitored and reviewed as set out in your care plan. The care plan should also include details of who to contact if things don't work as planned.

If your care plan includes community care services from a local authority, it should include provision to check that their care package is working well within two weeks of your discharge. If you live alone, this should take place within the first few days of discharge. Following this, your care plan should be reviewed at least annually.

How to complain about hospital discharge

You might not be happy with the way your discharge from hospital is being handled. For example, if:

the hospital plans to discharge you before you think it's safe
there isn't enough support in your care plan
you don't think your discharge assessment and care planning was carried out correctly

If you are in this situation or you have concerns about someone else who is still in hospital, it's best to raise them straight away. Speak to the person who is co-ordinating the discharge, or the supervising consultant.

You may find it helpful to get support from the hospital's Patient Advice and Liaison Service (PALS) or your local Independent Health Complaints Advocacy service.

If you want to complain about how a hospital discharge was handled, start by speaking to the staff involved to see if the problem can be resolved informally. Find out more about the NHS complaints process.

Page last reviewed: 22/01/2018

Next review due: 22/01/2021

There you are folks , chapter and verse !

Now , what could possibly go wrong ?

Please ... don't all shout at once !

To be fair to Carers UK , their own site contains a very good section on hospital discharges :

https://www.carersuk.org/help-and-advic ... f-hospital

Trouble is , it does NOT relect what's actually going on in the outside world !

Time to update that as the information could be construed as misleading in the real world ... on par with the provisions of the Care Act , 2014.

More emphasis on the problems being experience throughout CarerLand , and what to do in those circumstances would be advisable.

After all , family carers are NOT qualified NHS nurses ... or doctors in some cases !!!!!!!!
My Dad 83, was admitted via A&E earlier this month on a Sunday with dehydration and a UTI. He was in for a week moving from a sideroom to three different wards in the week. Discharged on Saturday with follow up to be done be GP after two weeks and put on waiting list for physio. Had to readmitted the next day with low BP as they had started him back on BP medications too soon. Admitted for three days then discharged with short term care support and STARRS nurse coming for first two days after discharge to check BP and movement in house. I don't know why that home support was not arranged on the first discharge unless home care support and home nurses do not work on on weekends?

Also I did not know that delirium is common in elderly people recovering from infection. One two occasions when my Dad had moved ward when I went to visit he was confused and thinking he was back at work. The first time it happened the nurses were very dismissive. The second time in happened after the second admittance a doctor did some short tests and a memory test which Dad did quite well on and said the confusion was due to recovering from the infection and the ward changes. I had no idea!
Hi busybee
Delirium is often a sign of an underlying infection. Often it's the 1st visible sign of a uti. it often follows anaesthesia too.
It also gets worse with age. When my FIL was 85 he had an op which went fine but the delerium was terrible. He kept telling us the nurses had turned pressure hoses on him and put their cigarettes out on him. He was very agitated. It was very frightening but did only last a few days
Yes the delirium only lasted a day each time. Was scary, i thought maybe they had given him wrong medication
102 posts