Husband will be coming home next week when carers, equipment, ramp etc are all in place. At a meeting with OT and a physio assistant this term Early Supported Discharge came up. I had read about it recently but forgot where!
So I asked OT about physio when he comes home and she said the ESD team would meet with my husband and decide whether he meets the criteria for further physio. I asked what the criteria was but she didn’t say. She said it’s their decision. I said he cannot stand unaided, his right arm and hand are almost useless and he can barely move his right leg and foot so surely he needs more physio.
I said you can’t just send somebody home like that when they are prepared to do all physio offered. She says speech therapy very unlikely too.
I am so confused now. I thought it was all automatic. He also needs an eye test as he can’t see so well since his stroke and the SA booklet says that the hospital says they can be tested before they leave but she says not.
You are caught in a tricky dilemma. As I recall, your husband wants to come home as he is “trapped” in the hospital where nothing is happening. I am not sure if the hospital has picked up on this and so they are trying to get him home asap.
If he was willing to stay in hospital, I would suggest you put your foot down and refuse to go home. They can’t force their way into your home and so unless you give them access they have to give your husband in hospital. But this is not an option as your husband wants to go home.
I can only suggest you use the PALS complaint service and explain your concerns. Also make it clear to the consultant looking after your husband that you/your husband are not happy about being discharged in his condition.
You can also insist in the eye test and show them the booklet - you will need to be very assertive and stand your ground. Tell the OT/Physio you want to make a complaint, and you want to speak to the consultant. You may only get lip service as a result, but you can have it on record that you had expressed concerns about the discharge.
In our experience, once you leave the hospital, it’s not easy getting the help you need. I must stress this is only our experience, and there may be others on this forum who have different, happier experiences.
Disappointingly, ageism and severity of stroke may be working against you, but you must try as best as you can to fight your corner.
I am sorry this has happened and wish there was more I could offer.
I’m sorry to hear about the situation you’re in. You may find it helpful to give our Stroke Support Helpline:0303 3033 100 a call if you haven’t already. They can offer lots of advice and help regarding what should be happening.
Wishing you well and keep us posted how it all goes.
Hello I sm new here. I hadmy stroke nearly 5 yeara ago now, my anniversary is on 20th fbruary. I was offereddarly supporte ddischarge help, but as wewre then just starting Covid lockdowns and noone knew what to expect. My family snd I deided to carry on alon, as I appeare to be very lucky, with no apparent problems. Stair rails wer put on both sides and I was released. Retrospectively I should havgrabbe all the help offeered. My dissabilities have only surfaced since I have been home.It certainly is hard to get the right help once you are home…Iwish you all the best Pam
I had my eyes tested whilst I was still an inpatient. I was taken to the ophthalmology department in a wheelchair and then took back to the stroke ward afterwards. I had papilledema in both eyes.
@Trisha2 i had early supported discharge for 6 weeks when I came home from hospital. I didn’t realise they got a say in whether further physio was offered or not. In my case they referred me on for further physio although I had to wait for that to start so had to do my own thing in the interim. I wonder if you could get a phone number for the early supported diacharge team so you can ask them your question.
You do have to be careful when you decide to remove yourself from a facility as the follow up support may be more difficult to access.
@Trisha2 - the above cannot be stressed enough. We are not trying to be alarmist but purely on our experiences, it really is important to stand your ground. This can be very hard if you are on your own. If you can get your family to support you. It is a team (MDT) against you and they are very subtle and clever how they steer you out. They are very good at pushing you into a corner
Good cop, bad cop. Physio will be the Good Cop and the Consultant or Discharge Manager the bad cop.
Don’t mean to come across as preaching or bossing.
Good news today. It’s been decided my husband can come home next Monday on the Early Supported Discharge pathway.
The rest of the equipment is being delivered tomorrow. They have asked for a carer 4 times a day for 6 weeks. Seems a lot but she says take it and if we don’t need 4 visits we can drop some off.
Therapy at home will also start and looks like it will be twice a week for an hour realistically.
As I got everything I asked for I didn’t push the eye tests as it would be very short notice anyway. I will book a home visit for my husband.
The only hiccup might be if the home carer cannot be ready for Monday. We are all looking forward to Monday.
Trisha2 - I am pleased you got everything you asked for. This is really good news but do make sure that you have got what YOU asked for and what they thought you asked for. Sounds silly, but they will be happy to discharge your husband and not be too worried about the fine detail which can be important. As has been mentioned, one you are off the premises, getting what you ask for and even what you were promised will not be that easy. Check and double check, get it in writing - the hospital discharge summary notes should include details of ongoing care and equipment to be supplied.
Wrt carers, experience suggests you will need at least 4 visits and hopefully 6 weeks will be enough. But if you find that you don’t need them - KEEP them. It’s surprising how quickly things turn and once you give them up, it will be VERY difficult to get them back. Believe me when I say they are not giving you anything you don’t or won’t need. In fact, I would suggest they are giving you the bare minimum that they can get away with.
IF Carers are not ready - you DO NOT go home. You will not manage on your own. ONLY go home if everything is checked and ticked off.
Finally - I would still push for the eye test whilst you’re there, but I guess time constraint is a factor, so …
Wishing you and your husband all the very best. I am glad you have made progress.
It sounds like everything is coming together for you both now & i hope the discharge home goes well. I wpuld echo @ManjiB re making sure the carers are in place before discharge takes place as it can be more difficult to sort once your husband is home.
I hope everything goes smoothly & you soon get a routine sorted that works for you. I’m sure your husband will be happier at home too.
