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?

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

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?

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 ?

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.

Thank you for all of your replies, I’m currently under the care of Gastro, Neuro, Physio, and probably the most important is that I have Addison’s disease (late diagnosis in 20s) so I don’t produce steroids that “normal” people should. It leads to a crisis where only those that know me very well (and yes I live alone so they aren’t there 24/7 obviously) or medical professionals can pick up on. So I could seem perfectly normal to the ever changing carers (that’s not me being disrespectful by the way) it’s just that the nature of the at home care system means the carers are varied and only there for short bursts of time. For example I was convinced my friend and I had been talking about a certain subject, and was utterly confused the next day (as was she) as to why we hadn’t been continuing the conversation. It had all been in my head and she knew to ring for an ambulance. But when you have say 8 different carers, all wonderful and well meaning, but they have only heard a tiny part of a story, it makes sense to them, and why not? Then I might not see them for a couple of weeks and it’s all vey confusing for all involved.
My SW has tried and tried to get me in to care homes until we find a long term solution at least, but I don’t have the money to pay? And even if I did there are few that would take me because I’m too young.
so ambulances get called, I get patched up, then sent home. Then the cycle repeats itself.. last time I told the ward I had nothing waiting for me at home and they gave me some bread and milk. A kind ambulance driver gave me a bar of chocolate.
I’ve contacted anyone and everyone I can think of for help. Nothing has worked. Surely this can’t just be my forever now, can it? I still want to fight I just have so little energy…

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 ?

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.

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.

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

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?

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.

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.

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.

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.

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.

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/

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.

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.

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 guess that’s the dilemma. I need a continuity of care, where somebody (eg a carer, family, nursing staff) knows me well enough to know I’m not acting/behaving/speaking in my “normal” way and therefore knows when to administer (and can administer) the correct medications.
im not saying it’s an easy task, im not being mean about the nhs or the carers- it’s just a false economy for one of them to end up finding me on the floor spluttering nonsense then an ambulance being called, me taken to hospital and then as I say patched up and sent home. Then the cycle begins again. Surely that costs more in time and money and stress to everyone than doing a thorough job in the first case? I don’t have any great ideas!! I’m hoping somebody else has! X

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

They might be better able to help re discharge needs.

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

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

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?

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

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.