Unsafe discharge from hospital

I think mischance and I said a similar thing about sometimes the person themselves is actually being a bit unrealistic, but we said it from different perspectives! And that's ok.

I really respect that some PPs on here have taken the time to share their bad experiences and what they learnt in those circumstances and from their talking to others who also may have had a bad experience.

It is always better outcome when the most involved relatives/loved ones have a voice and their perspective is heard, especially if they are the main informal carers. That's not easy when someone is in hospital especially with covid restrictions on visiting, when you used to be able to go in with them and give a background picture from outset, or to easily chat to the nurses whilst visiting your loved one on the ward.

That's a nice helpful post mischance especially as you describe such a difficult past experience & have reason to feel angry and frustrated.

Paintyourdreams
Oh that's a lovely update- and I'm glad that PPs and I have been able to offer a little bit of general background public available type info about how the discharge processes may work.

It is a terribly worrying time, I really understand where you are coming from.

It's not uncommon at times for certain 'fiercely independent and determined' people (that's a different phrase for what some relatives may describe in their words as "stubborn" !! ) for someone in hospital even with full capacity to be a tad unrealistic about what they can do as they may desperately want to go home and hope things will be 'magically' a bit easier at home and not prepared to listen to any recommendations. So If DM needs care support, I hope she accepts the reablement carer service if one is offered if evidence suggests that.

It's brilliant you have taken time to share background & your perspective with the ward staff as they will have taken note of that- even if DM has capacity and they cannot over ride her wishes- as ward discharge team will attempt a little bit more discussion (persuasion ) if they can on basis of your info , if MIL is agreeable and consents. So please don't think they haven't listened. (Ie. It may be a capacitated MIL that is choosing not to listen). Or it may be that you provided crucial information that changes the picture that they can explore with her around her capacity to decide on discharge plans.

It is worth you looking up online the local social care website for your mums area. Some LAs have an incredible amount of useful information on there. Our LA's social care website is like a 'guide to most things you could ask' including so much about social care process and possible service options that might be considered of relevant, financial assessments, and general useful community information. Lots of local voluntary agency stuff like luncheon and social clubs on ours. It really varies from LA to LA. (LA = Local Authority, meaning social care dept in the LA).

I wish you and your MIL all the best. From what you said in your OP, MIL sounds a 'fiercely independent and determined' lady !!! You can only do your best and be open and honest with hospital and social care staff (where your MIL lets you be involved if she has capacity to decide on consent to share information).

If you get a chance it's is worth exploring if MIL will agree to letting you apply to set up lasting power of attorney (LPA) finance and property, and LOA health and welfare, for the future, if you haven't already.

OP - I hope that you manage to sort something out for your MIL.

It is very common for patients to say they can manage when relatives know darn well that they can't!

I think you need to be very clear with the hospital that she cannot manage without help; and you need to state exactly what you can and cannot do. It is worth understating what you are able to do to be on the safe side.

I am sorry if my posts seem off-putting, but it really is worth knowing what often happens on the ground - forewarned is forearmed! I know that my experiences are not unusual from talking to other people in the same situation, and also to the paid carers themselves. And to the professionals who came in - they too felt they were fighting the system and were very frustrated by it.

I hope you manage to find suitable care for your MIL and that it all goes smoothly.

I am so sorry to hear your experience mischance

(Also Apologies as I misread one of your posts earlier and thought you were also talking about a separate discharge of yours (after a slipped disc) but you weren't. )

Your OHs situation went wrong from what you describe mischance. I do hope you raised a complaint with both hospital, health (GP surgery & primary health team) and social care teams, so that they all took action as quickly as possible and also looked into what happened in detail to learn from.

It doesn't generalise that it happens regularly - at least not in our LA areas- as part of D2A process. As said by many PPs, that to get to D2A already initial plans for discharge needs (carer support, referral for nursing support and crucial essential equipment) will have been made whilst in hospital after clinical team assess the person as medically fit for discharge.

Discharge to assess is about ongoing rehab and ongoing assessment of needs with what might be better defined as reassessing or fine tuning by MDT in community settings (because people can be different once at home or out of the ward due to a variety of reasons) and sometimes longer term adaptations will also be identified as beneficial.

Several of us have said it generally does work well, as we see it every working day and we definitely remember and worry about the unusual cases where something didn’t work and want to understand why and how it can be quickly resolved. (Whether it wasn't set up well or that something changed that was unanticipated).

What's important for OP is that - if she suspects her DM is being unrealistic to her discharge team about what she was or can independently manage and what family will support with- if it's related to potential capacity issues- that OP contacts the hospital discharge or s/w team to give them family information and perspective. That can form part of the background information drawn upon in capacity assessment. It is also useful context even if the person is assessed as having capacity. The MCA 2005 has clear processes and statutory guidance.

The other important aspect for OP is to be reassured that there are community social care teams and MDT health teams who all work incredibly hard and can be contacted if things aren't working well at home.

People are wonderfully complex, so no one person (or case) is ever the same nor follows exactly the same path. It's why there are multi disciplinary teams in both hospital and community.

I have a great deal of empathy for people on this forum. Not only being in the field but also having been an informal carer myself on 'the other side'. Those professionals have families too.

If you want to talk about when things didn't work well and how people used to have far shorter prognoses, you only need look back 30 years ago when patients were still routinely moved into long stay hospital wards. The old community care act, superseded by the care act, literally saved a tremendous amount of lives. I used to be in research, still read research papers about improvements to clinical outcomes. These policies have a basis in sound clinical research and continue to be evaluated as that's how policies develop or change.

I don't disagree that we all as a society would love a bigger health and social care budgets though! Who wouldn't? But to do that which other area will money be taken from? Education? Policing? Infrastructure? Armed forces? Those areas equally fight for more funding, as it's all balanced by tax levels which is a much wider debate. When people say they want social care to have more funding, i always suggest they consider writing to their MP as well. Because that's how change of funding priorities can happen when there's an overwhelming national push for it.

The system is wrong - it is underfunded to a degree that is totally unacceptable. There is no need for you to take offence - I am sure you and your colleagues are working your tripe out to do the best for the people in your care. But I know, from bitter experience, that it does not feel that way to those on the receiving end. That is not your fault - it is the fault of a underfunded and under-quality-checked system. So much that looks fine on paper is not fine on the ground.

All the things that I have listed as having happened to me are I am sure things that you would regard as unacceptable. And they are just the tip of the iceberg.

I think it is important that anyone reading this with a loved-one due for discharge from hospital should know the reality of what actually happens to families, and the toll it takes on them.

My OH finished up in a nursing and was of course the youngest person there. It was not what I or the family wanted. Had an efficient system of care been available, he would have been able to end his life at home.

The system is chaotic - the right hand does not know what the left hand is doing, and the carer in the middle of all this is trying to get the best for their loved-one whilst juggling dozens of balls in the air and banging their head against a brick wall. I lost count of the number of people who came in and out of our home each day - every one of them wanting to help, but working in a complex system with one hand tied behind their backs.

I have no gripe with the people on the ground - they were all genuine and caring people - but they all kept apologising for the system - "we know he needs x,y,z, but I am sorry it will take an eternity - he will be dead by the time you get this , we are no longer allowed to do x,y,z, even though we are happy and qualified to, there is a crazy bureaucratic system for getting what we know he needs. etc. etc."

I am sure that the people you organise care for are people for whom you are wanting to do your best - but in practice the system does not work in the long term, and sadly for us in the short term it did not work either.

I spoke to so many other carers who were in the same situation and were tearing their hair out as we were.

And this is before you even start to talk about the finances. In the end I had to sell my home to achieve the quality of care I wanted for him, even though that was in the end in a nursing home, which was not what any of us wanted.

And @Mischance I take real issue and offence at you saying I'm "serving a corrupt system". There are plenty of posters on here who've tried to explain how D2A works. It's not dumping people at home. It's getting people out of hospital in a safe and timely manner back home where they are at far less risk of acquiring new infections/ deteriorating further. You'll find plenty of evidence that shows shorter hospital stay and community rehab / reablement have much better health outcomes for people, especially those who are older and frail.

Ringing the LA social care team was a joke - first you have to try and speak to a human, rather than get sent round and round; then you have to persuade that person that help is needed; then when you get to see that person you have find a polite way to explain to them that they are telling you stuff that is incorrect, which they were.

The care services are a joke - so many people involved; no coordination.

• OT says you need a specialist neuro OT - so we wait for that, then wait for the equipment - which takes several weeks.
• Physio says we need a specialist neuro physio - so we wait for that - and then wait for the standing aid for several weeks.
• District nurse says she cannot deal with incontinence and - wait for it - we have to be referred by our GP to the B&B service = bowel and bladder service. We wait to get hold of GP, then wait for her to make referral, then get a letter offering us an appointment at a clinic in 2 weeks. I ring them and ask how I might get him there - they offer a home visit - we wait for that. She arrives on the day before a bank holiday weekend and she has brought us 2 convene catheters - just the 2, and the wrong size. So we then have to get hold of GP and ask her to prescribe these - we wait a week or so for that to happen.
• District nurse says she cannot provide an enema and it has to be done through the GP. I ring her, she prescribes it, we wait for it to arrive, and then for District Nurse to appear and administer it. She doesn't. By that time OH is in serious acute pain and we have to go via ambulance service to get them to ring someone to come and do manual evacuation.

And so on and so on.

Do not let anyone think that the discharge process works - it does not. Do not take on the care of a loved one discharged from hospital until you have everything you need. And be prepared to fight.

You need to speak with the ward and ask if the hospital social work team and check that a discharge notice has been sent to them from the ward. This will then place a duty of care on the team to complete a discharge to assess assessment of need.

That will include gathering information action from the occupational and physio therapists and staff on the ward, as well as family.

A decision will them be made in conjunction with your MIL and you as family re discharge plans. This my include a respite stay due to the shortage of home care support.

Up until my mum was taken into hospital in 2019 I had cared for her for 7 years. I cooked every meal, made every drink, put to her to bed and dressed her but no one at the hospital asked for our input into her discharge and she said that she was capable of caring for herself. And no one would listen to us.

mischance
Was it right that I, as someone with a slipped disc, had to muddle through to my detriment (and danger) and that of my OH?

They should have asked you to speak to a hospital SW or discharge team to identify if you would need care support, if you were struggling with p/care and mobility on the ward. Please please ask them to refer you for discharge assessments and care planning next time if it ever occurs again. You can also ring up social care when you get home to self refer if you find you can't manage even if you initially thought you would. I hope you got through it ok and are ok now.

So I just wanted to say- it should work.

And if it doesn't please don't hesitate to ring your local social care team - (out of hours) "oohs" if it is an over weekend discharge without any care- and GP surgery or oohs GP - and also complain to hospital PALs team (or through whatever complaint system is in place at that hospital) about an unsafe discharge.

No one wants failed discharges or people to be unsafe and struggling.

I do find it really upsetting to read when someone describes become left and forgotten and how bad their discharge went.

Often this is because they were discharged without good plans in place or bypassed the social care system somehow and community teams are then dealing with "unsafe discharge " that family have rung in about. We then are trying urgently to organise care and urgent equipment via local mdt CCTs. We have some specialist rapid response teams (they are different in each different CCG and GP patch area! As my patch falls across catchment of several acute hospitals, OPMH hospitals, some specialist hospitals and GP Practice groups that have signed up to different Health project services )

Assessments for social care now take place AFTER. discharge - it's called "Discharge to Assess".

I'm a social worker - our initial assessments complex ones led by S/w and simple ones are mostly led by mdt discharge teams and all take place before discharge, we osentify that someone needs carers , how often, and equipment prior to discharge but that they may also improve on rehab from physio at home, if they have rehab potential. So we organise and mostly have a re-ablement team including MDT going in with care package and OTs and equipment etc - and it is an ongoing assessment as care needs may change and reduce with rehab that is part of the Discharge to Assess (D2A) process . It's called intermediate care by some areas. It's for up to 6 weeks then a decision is made for ongoing longer term care and at what level usually with a trail taper down if needed or an increase. Then we have a 12 week (but chargeable so financially assessed) further specialist contract with our main carer provider who can further "right size" (up or down) the care package carer support if suitable.

We also make use of D2A beds after hospital of up to 6 weeks funded (Non chargeable to client ) at block funded beds at local nursing homes with mdt reablement team going in those for people who have had major health crises - such as broken hips and THRs, strokes or other major health issues that it is not yet clear to client or to MDT whether they will ultimately need placement or lots of work and rehab and large care package to get them home. Years ago People used to move from acute hospitals to stay in the community hospitals for that rehab but lost skills whilst they waited and were away from home in unfamiliar ward environments.

So , our LA is very good at D2A. I appreciate it may work differently in different LAs (County councils) but here it works fairly well as good as or better than previous systems when we had far more beds. I see better results and suppprt to keep people at home. But of course it can always go wrong or not work out as planned due to unforeseen circumstances / deteriorations or other reasons.

So I agree with some of the PPs on here

Re enablement 'teams often set up care package and assess as they go in a multi disciplinary community team with OTs nurses and assessing reablement carers with the quick equipment in place - if essential such as profile hospital bed, air mattresses, slide sheets, mobile hoist, bed levers, commode, frame, perching stools etc
The longer separations such as ceiling track hoist, stair lifts bathroom adaptations to wet room or downstairs bathroom facilities on DFG can take far longer but manageable whilst that is processed. YoU don't want someone in hospital losing more skills and muscle strength , becoming disirientated, when home may be better for them. It is important that you ensure the discharge team hear what is realistic that main carer (spouse partner) or family are actually able to do - if anything- rather than a wishful thinking hope from the client.

There will always be equipment that is not essential for discharge that the person may need to wait for once at home. As long as they can be cared for safely once at home

So who does that caring in the absence of the care awaited? And who assesses whether that care is safe? - for the patient and for those providing the care.

Was it right that I, as someone with a slipped disc, had to muddle through to my detriment (and danger) and that of my OH?

There is no way that a system that dumps patients at home without the full care and equipment necessary can be right. The government wants you to believe this because it can then tick the bed-blocking box and say they have done something about it. You are serving a corrupt system.

Hospital discharge was my "specialist subject" for many years and the principles will not have changed: if there is no proper care in place, the patient stays where they are until it is, or is offered a community hospital place in the interim. I know bed-blocking is a problem, but professionals on the ground are duty bound to put the safety of the patient and their family ahead of political considerations. Just because the government does not properly fund the NHS and social care there is no reason for any social worker or OT to be complicit in unsafe discharges. They are pawns in a game that destroys their professional judgement and leaves vulnerable people at risk.

You need to explicitly say that if she is claiming that she can cope alone then that is clear evidence that she lacks capacity to make that judgement. Tell them that whatever she claims to the contrary she does not have reliable support from neighbours and family.

Do not specify that you will be visiting every weekend, indeed you need to explicitly state the opposite - that whilst you will try to visit as often as you can you cannot commit to being there every weekend and there will sometimes be 2 or 3 weeks between your visits. This is important so as to ensure that the care plan put in place covers weekend support too, and will mean that when you do visit you will be able to direct your time to much better effect to help make a positive difference, rather than just picking up the daily grind so that the paid carers don't have to come in that day.

@Mischance reading your post has helped me so much. I felt such a failure when my mum was sent home from hospital after a perforated ulcer in 2019. She has severe osteoarthritis, no connection with her illness at all, and with a vile discharge nurse and her denial of the support she needed we ended up collecting her from the ward and then we were left to put her in the car - which took an hour - and the same when we got home.

The only concession was that we had the care package in place. But mum made a supreme effort and would dress and take herself into the living room every morning before they arrived and so they stopped coming.

Meanwhile it took two people to get her to the bathroom and on and off the toilet. One of the carers arranged for OT to come. OT floated in and promised us the world. She was so lovely. She came back later that day with a commode, a frame for the toilet and arranged for the loan of a small wheelchair to get mum from the armchair to the bathroom and said she would be in a week's time. When she didn't turn up I phoned the number she had given me and it turned out she was on holiday for a fortnight. We never saw her again!

Thanks to the support here I knew what to say when she was taken into hospital last year. My husband and I withdrew all personal care and said that she had to be self mobilising and able to take herself to and from the toilet. That was when the dementia became obvious. She really did not understand how to move her body anymore.

Even reading this thread makes me feel panicked. Hopefully if someone reads our posts and understands that they have to fight for care and support it will be worth it.

@Mischance I'm genuinely sorry that you had the experience you had, but that doesn't mean that D2A is wrong or ineffective.
Equipment essential for discharge is given for discharge. Otherwise that discharge would be unsafe.
Care essential for discharge is also set up ready for discharge. Even if someone wasn't under D2A they wouldn't meet the carers that SS had sorted out for them prior to going home.
There will always be equipment that is not essential for discharge that the person may need to wait for once at home. As long as they can be cared for safely once at home.
Where I work, for example, a ceiling track hoist is a major adaptation and would take about a year to get put in place. As would a stairlift.
These pathways are set up so that people spend less time in hospital. Longer hospital stays have poorer outcomes especially for older people. So even though you had a really bad experience, in the vast majority of cases home is the best place for someone to be.

Round here getting any item of equipment takes weeks - what happens under this new system? Does the patient stay in hospital, or do they get discharged without the necessary care and equipment in place, as my OH did?

What happens when the care put in does not work? - I know all about this from bitter experience. Plenty of people come round with bits of paper and assess what is needed - but is it forthcoming? - no. Not without a fight. I was there to fight for my OH - what happens to those who have no-one?

Where is there choice for the individual? Should they just have anyone, however unsuitable, going into their home? - we had one carer who was giving my OH serious heart-stopping (literally) drugs when my back was turned - OH would have died if I had not seen what was happening and intervened.

Often the care that was thought to be needed is insufficient - we certainly found this. So - whilst awaiting what is needed family (if you are lucky enough to have one) found ways of muddling through. My DDs were washing my OH, changing his catheter and other personal care, because no carers had been sent - none of this is appropriate.

We were promised 6 weeks of care when he returned home, which was rescinded the day before he was discharged as the agency SSD use could not provide the level of care he needed (2 carers 4 times a day) and were not prepared to use a different agency - so, he was assessed as needing this high level of care, but because they could not find carers from their chosen agency we, as family, were left to muddle through. I had a serious back problem, my family needed to be at work and were taking time off.

It took about 6 weeks to get a standing aid - in the meantime we were lugging him about as best we could to wash him, change his pads, relieve his pressure areas etc. He was promised a tracking hoist - we waited and waited, then I rang up again - they had not ordered it!

I could go on - and on. It was a living nightmare and his dignity was last on the list. And as for our well-being - forget it.

This may sound like a rant - as indeed it is - but until you have been in this hell, you have no idea what is really going on.

There is an important principal here: care in place, THEN discharge.

Some years ago I was employed to run a research project into hospital discharge, and that principal was at the heart of it. Whatever home assessments were done happened with the hospital bed still retained; and some of those assessments were overnight. But the bed stayed.

This government has always taken short cuts with care - it is not good enough.

Their much-heralded care reforms are simply about money - no mention of quality! Surprise, surprise.

@Mischance it really does work. I know as I've worked in a D2A team. Ward based assessments are still carried out as usual, the therapy / SW team will have a good idea of what is needed to ensure safe discharge and get equipment ordered / arrange reablement care packages to start on the day of discharge. Then the D2A team goes in on the day of discharge or morning after to continue the assessment and plan what input is needed from then on.
Sometimes people do need to be readmitted, but that happened even before D2A. As long as the right teams and processes are in place, the system works well.

So - what happens under this new discharge to asses system? Are aids and alterations done before the patient leaves the hospital? Does the OT visit the home before the patient is discharged? Or is it just the government's latest idea for stopping bed-blocking, regardless of the well-being of the patient and their family?

There is no way a proper assessment can be done after discharge - once the hospital bed has gone the patient and their family will have to muddle through as best they can - this is far from acceptable.

My family and I struggled to look after my OH who was discharged with no care over an Easter weekend. He had nil mobility, could not feed himself, was incontinent, was having paranoid delusions, could not do any of his personal care ..... he was discharged and the assess bit came later, then the wait for carers to be organised, then the wait for equipment. I was tearing my hair out, in pain and thoroughly disgusted with the system.

Assess first and then discharge is what you should be fighting for.