AIBU to want proper home care arranged before hospital discharge?

[PeopleThatYouThoughtYouKnew]

Have had many name changes due to family etc.
Im chronically unwell- I’ve spent the vast majority of those year in and out of hospital- as soon as they need a bed they kick you out, whether you’re well enough or not. (I know the NHS is under pressure and I know all won’t agree, but 6+ stays in 4 local hospitals, plus 2 in care homes- and carers at the house). Just this year.
this week I was particularly unwell and my friend who has a young baby let me stay at her house as she has a downstairs toilet and is up at all hours like myself. She had to call me an ambulance I was that unwell.
so then the cycle starts again, I get admitted - they patch me up- and send me on my merry way even though I’m not capable of looking after myself. I’m too weak.
AIBU to just want my care at home sorted properly before I get discharged? Properly though- with mine and family input?
otherwise I just seem destined to repeat the process. I don’t know what to do and I’m scared.
any thoughts?

I have addisons as well as other more annoying autoimmune diseases.

Are you going into crisis regularly? Is that your main medical issue?

Do you have other medical needs?

If this is what has caused you to be in and out of hospital so much you need to see your endocrinology team again ASAP. Crisis should be rare and you should have been taught how to recognise it yourself and how to deal with it at home. And how to pretreat for any added stressors ie sickness, stress, temperature etc.

I would be fighting to see an endo rather than a care package as AD should be entirely manageable.

Apologies if its your other medical needs, as I've also been there done that - I was discharged to a nursing home for a few weeks after being in hospital for a month with one of my AI diseases as I was too ill to be left alone at home during the day

I used to work for a domicilliary care company and had 2 clients that I spent longer periods of time with - more of a personal assistant than a carer. They had 4 or 5 of us who shared the hours with them on a regular basis so there was continuity if someone was off.

Can you have the money sent directly to you so you can employ a PA yourself? There are charities like Penderel Trust who advertise for people on your behalf.

With all the best planning on the world you'll never get thecontinuity of care at home that you say you need. Carers have the right to days off, annual leave and sick leave so it will always be disrupted to some degree.

If your condition requires that level of continuous monitoring then you need to be in a care home. Why wouldn't a care home want you so long as the bill is paid, presumably if you are young when you are well you're fairly independent, which sounds like a dream resident to take the pressure off the staff.

A lot of care homes aren't registered to take people under the age of 65. The ones that are tend to be ones for people with extremely high care needs or mental health issues. The OP will likely find herself miles away from home in a nursing unit with elderly people who are mostly cared for in bed.

The OP also mentions that she 'can't afford' to go into a care home, if it is arranged through Adult Social Care it's means tested and providing only intended to be a short term solution shouldn't involve selling assets or anything like that to fund it. It will however mean that nearly all her income will be used to fund her care while she is there, minus any money needed to keep her home running in her absence.

Again, based on limited information the OP has provided and assuming the primary issue at the moment is the uncontrolled medical condition then any care being provided for this should really be being funded by the NHS anyway...

For the purposes of fully funded continuing healthcare as a SW I would be arguing for high scores in the drug therapies and altered states of consciousness domains, possibly the use of the blank '12th Domain' and CHC eligibility based on the nature, unpredictability, intensity and complexity of manging OPs adrenal crisis currently.

What are they able to do at the hospital, as you say patch you up?
Is it getting your hormones back to a regular level?
Is it adjusting anti depressants?
Is that what carers do at home for you , to help prevent that?
That is the thing in a bit confused on, I am not trying to be rude, just trying to clarify so I /we can maybe offer ideas

If you were to go into a care home the income you would be allowed to keep is tiny which would severely limit your independence and autonomy, if you are unable to self fund.
I would talk to the SW about extra sheltered accommodation instead.
However, I think you need to really self advocate with the medical professionals and keep pushing for help in managing your condition(s). Don't be brushed off easily. Be persistent.
Could you consider a flat or house share with someone you know, or offer a spare room in return for keeping a general eye on you?

Yeah unfortunately the OTs seem to get the place suited and booted then do off… with little thought of how I’m now going to move around all this excess furniture which a lot isn’t useful to me! This is what I mean about hospital discharge to home, surely there has to be a better way? X

You mention family, can they help
to get the care you need?

In an ideal world what would your care/ home environment etc look like to get things working better for you?

ASC would not fund a CH if the Ops physical needs i.e washing, dressing, meals, toileting can be met with a POC at home.
If there is a health need this would have to be assessed by the ICB

@PeopleThatYouThoughtYouKnew
Can you answer as to why you have so many crisis and whether you have had the training yourself as this is the usual pathway, the person is taught to manage risks and titrate meds accordingly

Have you had a care needs and financial assessment, who arranged the care package, does it need increasing. What's your home situation, would you be safer in supported or extra care housing., what equipment do you have or need.

How old are you.

Which area of the country are you, where I live we have several rental housing options for younger people with medical needs, they are arranged after a care needs assessment, you pay rent or housing benefit. I always have powdered milk, drinks, tins, pasta, rice at home in case I can't get out.

They have good selection of free from meals to suit all but I think you realise that my point is about having a stock of meals ready for discharge. Frozen veg is just as nutritious.

Have you thought about getting rid of the excess furniture to give yourself more space?