AIBU to want proper home care arranged before hospital discharge?

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

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.

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.

How old are you.

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.

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

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

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

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?

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

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.

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.

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.

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

That's a direct payment rather than a personal budget.

Everyone with a care package through adult social care has a personal budget (whether they realise it or not) - they can then opt to have their personal budget given to them as a direct payment and the council can agree if they feel it's appropriate.

As discussed above its a great option for a lot of people but does have some drawbacks as well.

However,
Without knowing the full details (and I suspect there is a lot more complexity than just the Addisons Disease) if I were the social worker involved I would absolutely be approaching the local ICB asking them to at a mininum part fund OPs care given from the OPs information it primarily appears to be about manging a currently poorly controlled health condition. That's not what social care shouldn be managing and it isn't lawful for them/the OP to be funding that.

Has your social worker discussed about personal budget with you. You get an allocation of hours/money and you employ directly. This would give you the consistency that you need

I’m sorry you are going through this OP. What part of a care package do you think will help though? Seems you already have carers but the issue is, you want a specific dedicated carer, and unfortunately this is not the way ‘care’ operates, it’s not really feasible for a number of reasons. Is there anything else that you feel could help?

Have you used this self help group. No idea what it could help with.

https://www.addisonsdisease.org.uk/

Do you have an OT? (Not the physio, an occupational therapist)

They might be better able to help re discharge needs.

My dmil is in sheltered accommodation provided by Joseph Rowntree Housing Trust which was excellent. Although intended for over 55's they do also provide accommodation for younger people with complex needs so it's well worth looking into these places.

They could provide the continuity of carers you need. I'm not saying specifically JRHT (they're in the North East) but this type of accommodation may be ideal for you. Worth asking your SW about it anyway - you'd still have your independence but with the care elements available and a full team that may be better able to support you.

https://www.jrht.org.uk/about-us/what-we-do

I was thinking that too - it sounded like they almost wanted a several times a day medical check/am I going into crisis check, which isn't usual. I suspect many carers in homes or community would have much of a clue about an adrenal crisis.

Carers are also very very used to people talking about imagined events/odd stories so not going to flag much with them as a concern. I goto care homes regularly - invariably people are there have dementia because anyone without dementia does everything they can to avoid living in said care home - so you need to ask what the patients baseline is trying to establish a normal level of orientation or mobility. The huge majority of the time the answer is the carer doesn't know - don't work on this floor normally/I've just started/I've not met them before...

I definitely agree with what this persons says in that when you're assessed for care provision most of it is things like are you unable to administer your medication, make a drink, meal, can you wash yourself in shower, can you wipe your own bum, bit of ICT input maybe would you benefit from a commode, bed downstairs, grab rails, frame that kind of thing. Those are the factors that are looked at/considered providing.

You need your social worker to step up a bit here.

As PP have said, there are options such as direct payments, where you would employ your own carers keeping the consistency you need. However, the down side is it’s really difficult to find good quality carers and arranging cover when they go off sick or holiday.

You appear to have more medical needs than social care needs, a general carer is unlikely to have had the specific training required for your condition.

Wouldn’t supported living suit you better? Where you’re in a multiple occupancy home but have your independence, whilst being kept an eye on.

As it happens (I was googling the condition) today is Addison's Diesease Day - see link. Are you in contact with this group OP? Wishing you well.

https://www.addisonsdisease.org.uk/