PLease help - hospital discharge

[petiteonion]

I really hope someone can advise. I don't know where else to post this

I have posted before about my dad. I live in another country from my parents

he is a very very ill man with asbestos, COPD, Diabetes and asthma as well as other conditions. Bacteria have now colonised in his lungs and he is resistant to alot of anti biotics. his lung capacity is down to around 25%.

his life is so limited and we have neubulisers, O2 machine, o2 cylinders etc at home. He is on and out of hospital every week and whilst as home is now entirely reliant on my mum for his care. he cant walk, toilet, change clothes, wash etc without my mum.

he has been in hospital for 16 days on IV antibiotics and was due home last Tuesday but took very unwell again. we were told he had flu and he was started on Tamiflu last Tuesday. he was so so confused and agitated in the hospital. this is not really like him and certainly not to the level he was showing but he was discharged on Friday with no discharge meeting, no care plan in place. my mum was told that the confusion could be a side effect of the tamiflu but it would settle when home and the side effects would wear off with a couple of days.

my mum had a really awful weekend with no sleep at all. He was incredibly confused with hallucinations, delirium, agitation etc. He didnt eat or drink a thing. he was pulling his O2 tubes off, ranting and raving, falling out of chairs and she had to lift him / carry him, screaming with hallucinations. I rang the out of hours doctors on sunday morning and he was readmitted as his oxygen level was 69.

the confusion is still there and when we ask how he has been at night - we are told "unsettled" with no explanation of what that really means. he doesn't really know where he is and doesn't recognise family when they have visited. we are all so worried about him and is this confusion linked to the Tamiflu. a nurse told my mother today on the phone that we can expect up to 10 weeks of this!!!!!

my mum got a call at lunchtime to say to come and collect him as he was being discharged as his oxygen level was back up to 89%. no mention of the agitation and confusion and refusal to eat or drink.

I have been trying all afternoon to speak to people to say that my mum cannot provide the level of needs he has any longer on her own at home and he cannot come home today until things are in place.

the ward has not done a social work referral and so they (social work) wont speak to us until that happens. there is no care plan in place, no assessments planned and the ward says my father has capacity and wants to go home so he will be going tonight. They will arrange an ambulance if someone in the family doesn't collect him.

I have tried to speak to the ward manager about my concerns for dad but no-one has called me back.

I am desperate - can anyone advise me what to do?

Sounds awful. I think your mum needs to refuse to allow him home.

Hi petite, that's a lot going on there. I am a community nurse specialist that looks after people just like your Dad with chronic illness. Our role is try and reduce hospital admission/ readmission. Do you know if there any community matrons in your parents area?

Has your mum stated she cannot have him home? Even though he has capacity if your mum can not cope with his care needs he needs assessment & she needs to decline to have him home. Can you say which area they live in?

Ask for a second opinion on the capacity assessment in the first instance? If your father is deemed to have capacity and wants to go home, they can't keep him there for the various necessary assessments and follow up. Getting this looked at again might be a good bet.

I would make your concerns clearly known. Go to the ward and ask to speak with the ward manager/on-call doctor etc? Even to delay things long enough to have an assessment of his capacity again etc. I also find that asking and documenting peoples names helps.

they live in northern Ireland. I don't so I am trying to do things by phone.
I understand that they wont discuss his health issues with me due to confidentiality but it feels like they are simply not listening to us.

I have never heard of community matrons - is that like a district nurse? he did have a district nurse at one stage who came to the home when he was on IV antibiotics at home.
he has a respiratory nurse who comes once a month but it is hard as they will not talk to my mum about his health. I have been there when she has visited and he lies so much - pretending that he is walking to bathroom, that he changes his own clothes etc. when we have tried to challenge this - we have been told that they will listen to the patient first and foremost.

my mum has told the ward that she cannot take him home. I have also said this to the discharge nurse and said that whilst we don't want to do this - his family is not in a position to care for him with the level of needs that he has. we are refusing to have him home.

would I ask the ward for the second opinion on capacity?

I just rang him on the mobile - he is rambling away and doesn't know who I am. he thought he was talking to his dead brother.

Refuse to accept him home, that's all you can do, to provoke a SS referral.

iasktoomanyquestions- we are saying that loud and clear but it seems no-one is listening.

I have spoken with discharge nurse and outlined this but she said he was medically fit for discharge and no longer acute so was being discharged. I asked where to, given we were not accepting him and she said that assessments etc will just have to happen when he is at home. she has no idea of when that would be as social work will deal with that and we will have to speak to gp to see if he can do it. she said that this had nothing to do with her.

my mother is in bits. I feel awful being so far away. I really cannot get home until early next week but there is no way either her or dad can be left in the same position as last weekend.

Ring the hospital and ask to speak to the site manager and explain to them that you will not accept him home before he has had OT and social services assessments .

I have spoken with discharge nurse and outlined this but she said he was medically fit for discharge and no longer acute so was being discharged. I asked where to, given we were not accepting him and she said that assessments etc will just have to happen when he is at home. she has no idea of when that would be as social work will deal with that and we will have to speak to gp to see if he can do it. she said that this had nothing to do with her.

That's incredibly unhelpful and one of the main responsibilities of a discharge nurse is ensuring the patient is discharged safely and to an appropriate location where his care needs can be met- if you are unable to have him home then the assessments can all happen in hospital, it just means a longer inpatient stay. I would advise for your mum to stay firm, do they have PALS or the equivalent in Northern Ireland?

Sorry bold fail

If he hasn't got a key and they try to discharge him in an ambulance they will have to re-admit him.
They won't leave him unless he has somewhere to go.

Distressing sadly. They have failed hugely in their discharge planning.
Yes on paper he may tick the box of no longer being acute, but not to assess his ability to manage at home is appalling.

Can your mum stay will friends/ relatives for the time being, and not be available to accept him home? It might buy you some time to get appropriate assessments in place.

Do not be bullied. This is appalling discharge care.

I feel awful for both of them. He just called in hysterics that he was being kept in jail snd why wasnt i coming to get him. My mum is in floods, feeling guilty and awful that she is doing this to him.

I just read thst hispitals discharge boiklet. Oh how i have laughed at the disparity with what they say will happen and the reality.

She cant leave the house due to pets needing cared for and no-one can take her and 2 dogs.

Contact PALS

My dad had sepsis last year following an operation, he was on a ventilator and sedated for 9 weeks. He also ended up with delirium, which sounds very like your dad. It took weeks for him to gradually start to communicate and recognise us.
One thing I did notice though, was that some nurses assumed that he was an old confused man which was not the case.
I definitely don't think they should be sending your dad home if his current state isn't usual for him. Hopefully someone will pay attention and continue his care until he is back to himself x

How awful...this is not a safe discharge. Repeatedly stress that. I’m in n.ireland too...in my trust if a patient is medically fit (which seems debatable taken into consideration his confusion etc) then a patient is usually discharged to a rehab bed (be this a rehab hospital or residential home) for further input and assessment from OT,physio and social services so a thorough discharge can be put in place. I don’t know where you are but is there a rehab hospital near by? I know getting moved from acute isn’t great but if it means a proper plan for home might be.best option? Alternatively if he does go home do an urgent self referral to social services. Really stressful for all of you hope you get things sorted soon

Firstly - the confusion/delirium could be a drop in Potassium levels - happens a lot to my mum (in fact she’s in hospital with it right now, seeing rooms that aren’t there and claiming abuse and all sorts). If it is that, 2-3 days on a potassium drip will do the job. You obviously need to request blood tests first, GP can do this at home if necessary.
Second, get an email to the managing director of the Health trust that manages your hospital. PALS in my experience are shit, you need to go to the top and make it clear if nothing is done you will be doing a Daily Mail sad face story in the press.
Third, call your dads local Adult Social care Department (ring your council, they should put you through) and say you’re reporting a crisis situation and need immediate help.
Between the three, you should get sorted. Failing that, tell the hospital that if they deliver him home, within five minutes you will call an ambulance and have him taken back again. Every. Single. Time.

Contact PALS yes, but also start an official complaint via the hospital/Trust's Chief Exec's office stating that the hospital is failing in its duty of care to your father by not working with social care and the family to ensure his discharge will be safe and that his care needs can be provided at home.

Social care assessment and agreement the package of care needed must happen before discharge.

By the by social services here are integrated into the Health service not council like England etc. For example Belfast health and social care trust. So you will access social services via health centre usually - can get a number to access them directly and self refer to a duty social worker

I live in NI too and have been in a very similar situation. They wanted to send my father home, he was delusional and delirious, we had no idea how to deal with him and it would have been extremely unsafe for him to come home in that state. I kicked up a fuss with the Sister and his consultant, who ultimately agreed with me but told me they had no space to keep him so we had take him home. I put it back on them and put it in writing that it was their decision and their responsibility to discharge him, and thankfully they then decided to keep for a few more weeks, during which time he improved greatly and we were then able to take him home safely.

Thank you so.much. I really do appreviate it. I felt so lost earlier.

Dad is staying in tonight. A referral is to be sent to social work in the morning. OT and physio will do an assessment tomorrow and after a discussion with social worker, dad will be discharged. I have said i want it noted that at this stage his family is refusing to assume responsibility for meeting his complex care needs. The nurse was v shirty with me saying we didnt really have a right to do that.

Anyhow i have a clearer sense of what i am going to do and have copied and pasted excerpts from their online patient discharge handbook to highlight where they not done what they say is their own good practice.

Thank you again

I sjould say that this stage - nurse said they are expecting a discharge tomorrow. Where to, who knows.

Where I work, care homes just call 999 on flimsy reasons and dump the person back at the hospital, then refuse to accept them back in the care home. People do it with their elderly parents too. Its heart breaking, But, the hospital cannot discharge unless the discharge is deemed to be safe.

The awful thing is your father's agitation & confusion could be something relatively simple like a urine infection, but unless it is diagnosed & treated it won't get better. I would try to speak to the matron or equivalent & tell them that he hasn't always been like this & that it needs to be investigated before he is discharged.

A few years ago my late fil was in hospital. Mil refused point blank to have him home. He was fully assessed and a care package was put in place. He died a few months ago but for 4 years he has had twice daily carers changing his pad etc. He became mobile again, being able to walk around the house go upstairs etc but struggled with his personal care and getting a meal etc. Mil worked until a few months ago so the carers were vital. Your mum has every right to refuse him coming home until there is some sort of care package in place. Mil stressed she would struggle to care for him. She is physically fit etc but sometimes she has had to change him when carers were off etc. It wasn't so much the physical toll it was very stressful for her.

And fil had copd, early dementia and heart problems.