AIBU to want proper home care arranged before hospital discharge?

I wonder if they think many of your symptoms are more functional? Have they given you any diagnosis like EUPD/BPD/Fibro? Sometimes I see that when people are bounced around several specialties and it's kinda like 'medically there's nothing to add here...'. I have seen a previous decision that the fact a young person wanted to live in a care home against them - it was evidence as a sign a lot of symptoms were performative or exaggerated. (I have no involvement in decisions like this, I work for ambulance service so just the middle person who has a brief involvement/see the notes behind whats going on in people's care/decision making).

But if that's not you and your living multiple serious illness then none of that should be a risk. Addision's though whilst clearly a dangerous illness isn't normally something that would have much bearing on a care home placement it's typically just something to highlight to any HCP that you see in illness/ be vigilant about in terms of recognising when to increase your steroids.

One of the risks of going into hospital is that if you have a brief admission any care plan you had can be cancelled and you can end up going to the bottom of the list. If you're someone who's borderline on need i.e they assess that you may be able to cope/may be more functional, and there's pressure on beds then they'll send you back home with less.

Care in the community as you've noted is extremely variable. There's certainly some amazing individuals out there but the system beats them down i.e only being paid for X minutes of patient contact so very rushed no time for any real contact/feeling like they need to overlook a problem because if they deal with it they're going to have less paid work in the day and can't afford not to move on - but the act of doing so breaks people/really affects the ability to care/you can develop a inability to care be compassionate in a normal way - it's really odd. Unfortunately as it's a privatised part of the care system it's extremely expensive whilst being absolutely cut to the bone lowest possible staff wages lowest staffing levels hence lots of changing faces.

I'm sure you've got all the numbers but if you feel you have an insufficient care package you can go direct to social services - search for your town name and social services and you would get the contact details. Or you can ask your GP. This prompts an assessment from social services - part of it is essentially what's the minimum provision of care you need to be safe - and this is their assessment not yours. The next bit is what can you afford to pay/do you want to pay for extra.

If the op is under gastro. The last thing she needs is Wiltshire farm food. Keeping fresh food in the house and preparing meals for a chronically ill person is a whole life admin event. It’s not as easy as pp’s are saying.

It may be an idea to have food supplies in the house, uHT milk, small loaf in the freezer, Wiltshire farm foods/parsley box etc for when you come out of hospital. Online shopping free delivery pass so you can order from the ward for delivery. A cleaner who will do laundry. A daily plan for managing your activities so you don’t overdo things.

This is known as a direct payment and although they work really well for some people there is a lot of admin involved -you effectively become an employer. They aren't great in situations where there is a lot of instability and change/crisis as it places a lot of management responsibility for managing staff /HR/hiring firing etc on people who may already be struggling just with managing their basic day to day life.

Sorry, I’m still confused on what it is you want carers for. Normal roles would be things like personal care, preparing meals, helping with transfers eg bed transfers - if you cannot do these yourself. I may be wrong but this doesn’t seem to be the case here, and you can typically these things independently? In which case it’s down to managing your medical condition. Carers are not medically trained, they cannot do this.

What is your support package currently (per day/week) and do you have any nursing support from e.g. district nurses currently?

I'm guessing there is a lot more going on than just the Addison's disease.

Care Home admissions via adult social care are based on need rather than ability to pay - if you are assessed as requiring that level of support then you should only be charged what you can afford to pay towards that if it is for short term support (the funding for permanent moves is different) This should be not vastly much more to what you pay for home care but will take into account that food etc is provided.

If the SW feels you meet the criteria for residential care and that's where you want to be then the only barrier from an ASC point of view would be finding a placement that takes younger adults - have you had any placements offered yet?

Carers are there to provide personal care not manage a complex medical issue , thats completely unrealistic to expect them to manage this

Have you had Specialist Nurse Training on how to recognise and manage your symptoms / anticipate and titrate steroids ?
@PeopleThatYouThoughtYouKnew

Thats the first step

It doesn't sound easy for anyone involved. From what your saying you need the same few carers to visit you rather than who's avaliable from the agency. The problem is unless you have the money its hard to insist on the same same care people. The amazing care staff all work different shifts and patterns. Im not sure how this works but could you claim the care money and arrange your own team of carers, I could be totally wrong and it might not work like that. I know it can happen in respite care. I cant see them putting you in a care home even temporarily as the cost is sufficient, especially if you can live independently even with support.

This is heartbreaking, you’re being horribly failed by the system. I would refuse to leave next time you are admitted to hospital. I’m so sorry you are do unwell and having to advocate for yourself when you shouldn’t have to.

So why do you end up repeatedly going back to hospital ? What are the carers not doing that means you end up getting ill again ?

I’m sorry I’m not understanding this well. Is it that your condition is not well controlled and the carers don’t realise when you are going downhill because the only signal is that you stop making sense when speaking to people - and they don’t see you consistently enough to pick up on this ?

I guess my question is: what do you need the carers (or someone else) to do that isn’t currently happening ? And is the aim to keep you out of hospital in the first place or to be better prepared for when you are discharged ?

Yes, there need to have a care package in place. There should be coordinating this. In hospital.

If you mention you have family or friend support, they will assume they’ll look after you. Say you don’t have anyone.

Adding to the above questions, what’s your home situation ? Do you live alone ? Are you rural / urban? Would the care be temporary or permanent ?

That sounds rough.
What kind of on going care are you needing? Are you able to self fund, or do you have health care benefits through work that could be accessed?

Sorry to hear this OP, do you mind sharing what is ailing you? Different ailments come with different support systems upon discharge . Also speak to your GP