I’m posting this in the Carers section as I am a carer, but it should be of interest to all.
I wanted to discuss my experience of my OH’s discharge after a long hospital stay. His care needs have changed considerably since being admitted. He has gone from being pretty independent, although with PD, to being very much dependent. Discharge has been a pretty stressful experience. For the benefit of anyone who is being discharged from hospital and their carer(s), where care needs have changed since going in, this may be of interest.
The gory details of my experience are below, but in brief my take away from this has been:
- When discharge is mentioned, ask who your Discharge Coordinator is: what is their name, what is their contact number? Say you will work exclusively through them to save any confusion or miscommunication.
- Be prepared for pressure. They will want to discharge asap (ie within the next few days), but you or your loved one can only be discharged once everyone (not just the hospital staff) is satisfied that the home environment is safe and appropriate. If you’re the carer they need your consent.
- Don’t agree to discharge before they’ve told you what the proposed care package is. Ideally get it in writing.
4.Ask for a meeting - press hard for this. It is far better to get everyone in the one place for 30mins and sort everything out in one go, and it saves a lot of stress and phonecalls from numerous people who are not up to speed on the previous conversation or who may give you incorrect information. Go to the meeting prepared - make a note of the questions you want to ask. Take family/friend with you if you feel nervous/intimidated.
- If you’re refused equipment, don’t accept a flat no. Explain why you need it. It may miraculously become available once the situation has been explained.
- If you’re the carer, make sure your needs are discussed as part of the package. If you are caring for more than one person, make sure the hospital is aware of this. They should respect your need to care for the other person (although they may not)
My husband has PD, but had been managing it pretty well. He has been getting recurring urinary tract infections for about 18 months and is waiting for treatment of kidney stones which are thought to be the root of the problem. At the beginning of May he developed another infection which developed into sepsis. He just escaped the ICU but he was completely delirious for several weeks, his PD got out of control, his blood pressure was extremely low and he lost all mobility. After 2 months in hospital the delirium and the PD have settled, but he has gone from someone who was able to carry on a pretty normal life (if at a slightly slower pace) to someone who has very restricted mobility (a few feet with a walking frame) and who is doubly incontinent.
Discharge was first raised 3 weeks ago. At that point, because his mobility was so poor, the plan was to move him to a care home for rehab & intensive physiotherapy. However that fell through because of a Covid outbreak, and the plan reverted to discharge from hospital to home.
Our bedroom and bathroom are on the first floor, so downstairs living would have to be arranged somehow.
This was all complicated by the fact that my 92-yr old mother was being discharged from hospital to a care home at the same time, and I needed to give notice on her flat in sheltered accommodation and clear it. She lives just outside Glasgow, we live in London. I am her only living relative. My reasoning was that it would be better to sort this out now, rather than go after D came out and leave him on his own. I told the hospital this and told them when I was going to be away.
Later that week I was in Scotland for 2 days to start arranging a clearance when the OT rang me to get my consent for David to be discharged to rehab care. The following day she rang again to say that that plan was off because of a Covid outbreak and D would be discharged home - within a couple of days! I was very upset and tearful because I was counting on the time the rehab care would give me to sort out my mother’s affairs and do something about our house. It has been quite specific at all times that D cannot manage stairs and needs 1 on 1 assistance for toileting. I asked her if she realised I wasn’t even in London. She reassured me that he wouldn’t be discharged until I was happy to have him home, and that there would be a meeting, which I would be invited to, to discuss his discharge.
I got home from Scotland and no-one called me during the following week. I used that week to start clearing furniture in our downstairs living room to make space for a bed & commode etc. I found a builder who was willing to put in a shower & toilet on a fairly short turnaround. I told the hospital I would be away again the following week (last week) as a house clearance had been arranged and I needed to finalise my mother’s move.
A different OT rang on Wednesday last week while the clearance was going on (in Scotland again). Because I hadn’t picked up her call the previous day, she wanted our children’s numbers so she could circumvent me. I was very angry at this - there was a perfectly good reason I couldn’t take all her calls and it had been explained (many times) to the ward and the OT staff. I am the main carer not my children and they have no wish to be involved. I explained I was not prepared to consent to D coming home over the phone when I didn’t know what the proposed care package was. What had happened to discharge meeting I was promised? He would need a bed, for instance, were they proposing letting me have a bed? No, D not eligible for getting a bed at home. Not only this, but she had not asked me if it was ok to talk, and I was having to carry on this conversation about my husband’s medical condition, including his incontinence, in front of some very embarrassed removal men.
From this point onwards, the hospital rang every day, at least once a day, to chivvy me about having D home - but still without outlining what the proposed discharge care package was. I was called on the Friday by someone from the Discharge Coordination team. I couldn’t speak to her because I was driving back to London, so spoke to her on the Monday. She, quite bluntly, wanted consent for returning D home. I said a qualified yes depending on what the care package was - still no info. By that time I had panic-bought a hospital bed and commode (not knowing whether I’d got the right thing. Total about £1K) I told her this, and from then on all phone calls wanted to know when it was being delivered. Slight problem with this as delivery is 2-3 weeks for a bed.
Total phone calls to me in the last 7 days are about 14. From at least 5 different people.
Finally, yesterday I got a call from a lady who has been appointed our Discharge Coordinator. I had a long and honest conversation with her and she has been extremely helpful. She apologised on behalf of the hospital, agreed that she would ask the team to step down the unproductive phone calls, and arrange a meeting between myself, OT, social worker etc to discuss D’s discharge in a coordinated way. Meeting was arranged for the following morning. I have just got back from it.
I went with some notes of what I wanted to ask. Met with physio, OT, our Discharge Coordinator, a 2nd Discharge person, and social worker by phone, around D’s bedside so he could join in. We discussed where D had got to mobility-wise, what room there was for improvement and continuing physio, where he was as regards falls risk, his general condition, toileting and washing, we resolved the bed issue (yes, we can have one after all and I can cancel the bed I ordered), a commode was offered, there would be a referral for his incontinence, carer visits, a pendant alarm for when I’m out. I even managed to catch a doctor and ask them if they could follow up with Urology for D’s kidney stones since he’s missed a routine appointment and a scan with being in hospital. (Even though it’s the same hospital the system doesn’t seem to accommodate an outpatient who’s become an inpatient.)
So, bed is coming tomorrow and D should be home beginning of next week. And a big shout-out to Natasha, Discharge Coordinator at King’s College Hospital. This is her first week in the job and she’s been amazing. She has been my fixer and I only wish - for everyone’s sake - she had been my initial and only point of contact.
It really shouldn’t be this hard or so chaotic. I am utterly exhausted and honestly feel quite traumatised. I’ve been getting up at 5am so I can do some work on the house and also hospital visit in the afternoon. As his main carer, surely I shouldn’t have to kick up such a fuss just to get some support and information.