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?

I'm not sure about NI but in England a Reablememt care package can be set up through the hospital social work team.

Hospital social workers can only take referrals from the ward but community social work teams can accept family referrals, you don't have to go via the GP. If you phone them first thing for advice they should be able to help.you.

I would contact pals for help today and insist on complaining and speaking to Someone senior. Make notes of everything that the staff say to you and insist you can't take him home. You are both going to have to be pushy and it will feel awful but it's not fair on any one to be left in this situation plus it's awful they are expecting your dad to go home I this condition. You can also always ask for second opinions so ask him to be reviewed again by some one else as well as social services.

Another vote for PALS involvement, look at the hospital website for their contact details, they often provide a drop in service www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/.

Also, ask your dad if he will give his permission for you to be added as (another) next of kin, this may involve him signing a hospital form, or your mum can give this if it's decided that your dad no longer had capacity. This will allow you to be given information about him & to be involved in discussions around his health issues & care. Good luck with everything

I'm in Northern Ireland. You must tell your mum to refuse to have him home until a care package is in place. DO NOT ALLOW THEM TO DISCHARGE HIM TO A CARE HOME, HE WILL BE PUT TO THE BACK OF THE QUEUE FOR A CARE PACKAGE. This happened to my mum. She was in a care home for weeks, eventually was admitted back into hospital after an epileptic episode. I refused to let her be discharged back to the care home. Two days later she got her original care package put back in place and was able to go home to her sheltered housing.

Funny how they were able to get the care package back in place when she was taking up a bed in the hospital but not when she was in the care home.

Also in NI. What hospital is he in? You need to speak to a social worker in the elderly care team. Has he been seen by a liaison psychiatrist? They specialise in things like delirium when it's a secondary effect of medication. You could try the patient client council for advice.

Agree do not accept him home of your mum can't cope.

What is your mum saying to them - grandad would tell the hospital everything was fine to get Nanna home, he told them what they wanted to hear but for two years refused even care visits! Eventually he gave in but unless you have medical power of attorney she can discharge him.

Speak to adult social services for an assessment but your mum needs to allow it still

Health and social care are combined in NI so not all of this advice is applicable. The hospital social work team is responsible for sorting a home care package.

There is reablement in Northern Ireland but there’s strict criteria - depending on his needs he might go straight to a core care package. Reablement is only recommended here when there’s potential for rehab and a reduction in the care package.

How did things go today?

Irish two ,- it's gone from bad to worse.

Where we are in nutshell - dad is not discharged. He has refused food and meds for 2 days and is not speaking to family. He was really abusive to my mum and sister, my brothers and also aunt. He has said we are not allowed near him as we are conspiring against him to not allow him home. He won't answer our calls or texts. We have told him that we want him home but need to make sure that he can be looked after. He says that he can look after himself entirely and doesn't need anyone to help so we can f**k, and refuses to see that the past 5 years have been hard on us all.

Nurses have agreed he needs package in place and that apart from his confusion, his needs have now increased so levels of care have too. He has refused to do any OT or physio assessments therefore no full care / discharge package in place.

My mother has been signed off work on sick leave for 2 weeks and is distraught but also reaching the end of her tether.

He still has not been seen by hospital social worker who just wants us to take him home and a package then sorted. We are refusing to accept responsibility for his care without additional support.

Apparently he is signing himself out in the morning. He can't even pull himself up a bed any more never mind get out of it and has constant oxygen so how he thinks that might practically happen I don't know.

No-one seems to know what to do. It seems that the only option is to now take him home with no assessments, no plan and no support, given he has told each one in family all our faults, where we have failed him and just what f*king hateful c*ts we are and that he never wants to see us.

Is that behaviour out of character though?

Do not bring him home.

Have you spoken to a doctor? Ask to speak to the named consultant over his care tomorrow. Even if you have to be in the hospital all day to see them. Ask for the liaison psychiatrist to see him urgently.

This is typical dad behaviour tbh.
He was very abusive in the past and as he got older, he focused on verbal abuse. My mum has always borne the brunt.

That sounds absolutely awful and so stressful for everyone involved.

Has there been a cognitive assessment (I know OTs do these but a psychiatric nurse can too)?

If the doctor is saying medically fit,he’s declining assessment from OT and PT you are in a difficult position- has the nurses commented on his functional ability? His continence? Etc. If so and his needs can not be met (or that he will decline) a traditional care package it may be that a temporary nursing home placement may meet his needs? Would he oblige with assessment and assistance if these were his only options? Is there oxygen piped in at home yet? At least it’s a Sunday so he’s likely to be discharged today!

Sorry I meant unlikely to be discharged today

We have a neubiluser, piped in oxygen and also oxygen tanks at home.

We have written him a letter to explain our position, emphasising that we want him home but can't meet his needs without help. All 4 siblings agreed on it.

My sister took 3 copies up, one laminated. She went into his ward to give it to him and talk over it but as soon as he saw her, he started screaming to get that c**t out of there. She left to avoid upsetting him, other patients and visitors and went and spoke to the nurses who said they will try and speak to him later.

No assessments by OT or physio have taken place as he is refusing everything right now. He is now not taking any meds for his diabetes, blood pressure, mucus on lungs and water retention. I can easily imagine him being so stubborn that he would rather die than accept we need help.