To just want to go home now?

[Angliski]

I’ve been in hospital nearly 100 days. I was dragged under a car and broke my back sustaining lots of fractures and a spinal cord injury. Some of you may remember my early posts.

im now in rehab hospital ward. Been here eight weeks. I’m desperate to go home. I have a 3 year old ds who is really starting to struggle with my absence, a business that is limping on without me where I employ a number of women and a home and DH that need my love and care. I cry from homesickness every day. I’ve learned to walk with crutches but still need a lot of physio etc to get me to anything like my precious abilities.

this is a residential ward and I’m lucky to be here. It’s nhs. But…. There’s only 2 hours of physio a week. The best bit is the hydro pool which I get one supervised session in but can use daily on my own to practice walking and strengthening the paralysed parts of me. It’s very slow moving here and very medicalised. I want to go home and arrange my own physio and hydro appointments and be there for my boy again.

they would happily see me stay here for another month. I don’t think I can stand it, mentally. I’ve come a long way from the crushed mamma on the bed and I desperately want my life and privacy back. I don’t want to jeopardise my recovery and I know it will be harder in some ways at home. I’m scared of that too!

not to drip feed, because the accident was not my fault I am likely, but not certain, to get help with expenses of my recovery, including private support for getting better.

has anyone been in this situation? What did you do? I have found a specialist neuro physio in my town and I think I can do exercise and hydro at my local gym.

AIBU?

Y YABU stay out where you have a care plan already in place
B YANBU to want to go home and make a plan from there.

OP you poor thing, what a nightmare.

Has your lawyer asked defendant insurer to engage in rehab code? They should really be doing that even while liability being investigated. At the very least they should be arranging am INA (immediate needs assessment) with a case manager to ID what can be put in place NOW to aid your recovery and make life as un-shit as possible for you.

I'm a PI lawyer and would always always be pushing insurer hard for an INA.

Wishing you all the best.

Sorry @Angliski - I am not trying to make you feel worse. I was pointing out that people often overestimate their abilities and their lifestyle limitations when it means coming home after such a long rehabilitation period. Your risk of re-injury could be high (I don’t know). My kids were like adorable little cannonballs at the same age, so this is what I meant about him being at risk of injuring you. I know it’s lonely and depressing. I didn’t have the responsibilities you do when I was in recovery from my (less serious) injuries and surgeries. I didn’t have the support of family and friends at the time either. I am pleased you have a multidisciplinary meeting coming up. Hopefully that will mean good news for you re. release. I also hope from experience that you find someone local who specializes in PTSD to talk about your accident and recovery. You’ve been through so much!

I have nothing useful to add, but just wanted to say I was thinking about you the other day, and wondering how you were. I'm so glad to hear you're on the road to recovery, although it sounds long and frustrating. I can't imagine how hard this is for you. Sending strength.

Even the private lists are super long wait times atm, so I would stay. My husband had several mini strokes and lost a huge amount of function, it took about 9 months for him to be seen privately (longer wait on nhs) for several weeks, then his physio left and he had to wait again which meant his function dropped again. Unless there’s something in place at home, I’d stick it out. I totally understand and would feel the same as you, but I also think the more you can recover before going home, the more you’ll be able to do and the less risk of a stall or backwards progression. You’ve done amazingly to make it this far and I really hope you go from strength to strength when you do go home.

Hi @Angliski , you’ve done well reaching out to us/others, it takes a lot of strength to open up.
At this point I would strongly suggest you ask for some form of therapy/counselling.
If you’re not already doing this, I would also keep a journal, every day, write your 3 pages. Don’t overthink it, just write whatever goes through your mind.
There is also a very good book you could listen to, called The body keeps the score, that I think you might find useful.

In your shoes I wouldn’t leave the rehab just yet. The beds are very hard to come by, and they wouldn’t keep you if they didn’t think you need it.

Wishing you strength

Talk to your HCP and ask if you can do a hybrid model, an outpatient? Could you go home and sleep and come back for sessions as needed? There needs to be a half way house

I am so sorry this happened to you.
My dd was injured in a car accident that was not her fault. It took nearly 4 years to get the compensation and I had to pay for all the physio up front myself because it was not available on the NHS.
If you can't afford to pay up front, you would be better to stick with the treatment you are already getting.

Spinal injuries Association offer fantastic support and advice for people with spinal cord injuries. They may be of some help.

I was in a similar situation and I found my mental health and recovery sped up when I returned home as I felt more more like myself BUT it was really hard on everyone who had to support me.
I couldn’t be left alone as I had to be carried to the toilet and couldn’t move without help.
Is your DH able to provide the 1:1 care you will need?

I work in the NHS. It sounds to me that if you can get OT to look over your home you should go home with private physio.

I think it would help to really throw yourself into the discharge planning. You said you have your first MDT coming up so could you prepare in advance a list of all the things you will need for a successful and safe discharge, for example:

home adaptations (including the kitchen/access)
regular physio and OT
access to the gym and hydro pool
medical follow-up

once the team has agreed the list, get a clear plan of who is doing each bit and by when. For example, have you had an OT assessment to assess what adaptations are needed for your house? If so, who is going to arrange the adaptations and when are they going to do it? Is there a clear care plan as to how much physio your will get and how it will be provided? Check about your local gym to make sure they are happy for you to go there and access any pools they have - they may want some reassurances regarding which equipment you can use etc to cover themselves if anything happens. After the meeting ask for minutes and a care plan. Make sure that everything is documented and that there is a proper plan for how and when everything will be done.

Become your own discharge coordinator - it will keep things on track and also give you back a sense of agency and control in your own life. You sound like a remarkable person and you have so much strength. As someone who works in the NHS I would advise against leaving without all these things clearly in place. once you have left you might find things never happen.

I completely understand how you're feeling. I would also say that a friend discharged herself from a specialist rehab unit following a medical event. She was doing really well there, and it gave her a completely false idea of how she was progressing. Removed from the support and at home alone for the bulk of the day, she really floundered and found that all doors were closed in terms of support from the NHS as she'd discharged herself.

If you're going to do the same, make sure that you're going to get this level of support at home. You're in a specialist unit for a reason, and beds in places like this are like hen's teeth. Don't put a stop to your progress unlike you're 100% certain that you're going to manage at home (and that your DH can manage too). It's going to add a lot for him having you there as well as a child, and I don't mean that horribly.

First of all I’m so sorry this happened to you, it sounds dreadful and I’m wishing yiu a full recovery. Having said that I’m confused by your post. You make it sound like you’re in prison. You have the right to refuse medical care or rather choose your own care. Leave if that’s what you want. I’m actually surprised they want you to stay, there is tons of evidence that recovering at home is better for patients.

You’re not being unreasonable to want to go home. But you would be unreasonable to go home before a proper care package and adaptations have been put in place.

it wouldn’t be fair on anyone to go home without things in place and risks leading to long term issues for you all. Don’t underestimate the scale of change there will be for everyone and how much tougher that will be if things aren’t ready.

good luck for the MDT hopefully that helps get the wheels in motion.

Why don't you just ask them what is actually keeping you there? From my experience in the NHS they would not allow you to take up a bed you do not absolutely need. Wait and see what they say in the MDT meeting

Recovery is always faster when you’re at home, relaxed and feeling happier. They also can’t force you to stay in the hospital.

I’m basing that off my own experience of being in hospital, but I’ve never been dragged beneath a car or suffered such extensive injuries as you. It sounds like you’ve been through a horrific time though, maybe being back in your own home will help a bit? Wishing you a full recovery

If its a residential ward have they not allowed you home at the weekend or on an afternoon?

It's easy to think you've recovered in a hospital setting but managing at home is quite different and a lot more difficult. If they want to keep you for another month, in their experience they think you need it.

Perhaps you should try a home visit first (if you haven't already).

Speak to your lawyer asi had a friend who experienced similar, left rehab early and it affected her claim as the insurance company took it as proof that her recovery didn’t take as long or was as hard as she said it was! Which is ridiculous because they had access to her list of injuries. Just make sure your lawyer doesn’t think that will happen if you do go home.

im so sorry OP I have a three year old and I can’t imagine being away from him for so long it must be so so hard.

Op don’t go against medical advice.
Apart from your recovery possibly being longer, the other side will 100% use it against you
eg “see she wasn’t that bad, she went home” - “or if she’d stayed in hospital the prognosis would be better etc”

i think if it affects your claim you will have to stay until medically discharged.
they rarely keep people in longer for fun.
you can make up for your time away.
have you asked what the plan is to go home?

have they organised your home adaptations? they need to be done professionaly from a health and safety perspective.

I used to work in a rehab unit. Spaces there are very precious - people get discharged as soon as the team feel they are ready. If you are there it's because you need to be there, and because the therapists feel that you would benefit from/make better progress by being there. You may feel like you are doing exactly the same as you would at home, but you may find things much harder and more tiring, with less support around.

As an example, people have talked here about getting hydrotherapy access as an outpatient - however the unit will be staffed for assisting with hydrotherapy for their inpatient numbers. They may not have staffing to support you popping into the pool on a daily basis as well as those who are inpatients. Their liability insurance may not cover outpatient service in the circumstances you describe.

Obviously the decision is yours in the end, but I'd definitely recommend an honest and frank discussion about what support you would get if you chose to disharge yourself earlier (and as others have said, sadly, the fact that you did could be used against you regarding your insurance claim).

It’s not simply a choice between staying and discharging yourself.

Many rehab wards are fairly traditional and most deal with older people who don’t always have a lot of support.

Do you research, make a plan and then ask for a case conference to discuss how it could work. Let your team know you’re struggling with mental health.

Chances are if they see you’ll be better off they may divert resources to an early discharge plan.

In some places rehab for young people is home based.

www.health.qld.gov.au/qscis/spot

Also people forget universal public health care is a safety net. People don’t always choose the cheapest holiday or the bargain shoes. Sometimes they pay for more because that’s what suits them and their needs.

If you can afford it, why not ask if you can get a private physio, mental health support, massage or independent case worker or advocate if that’s what will get you home sooner?

(30 years in health care, holding a discussion about discharging about medical advice a few time a week and once managing a large rehab service)

Hi op, I remember your original post.

I am pleased to hear you are making a good recovery, although I do understand the homesick feeling.

I was in hospital years ago for months when my dd was 18 months, it was so lonely and hard.

Have you contact PALS? They are great at moving things along….

id have a discussion of either or
i thikn the main decider should be claims.if you leave will it effect that.
then how to get you home.you dont want to get to the end of the month and be expected to leave without things being sorted.if thy are needing you to stay they need to be working right now on how to adapt the home to how you will need it.
you need a proper discharge plan.

if you did go home and for some reason this claim couldnt go through would it devastate you then financially.if so id stay.

are you being helped more by staying.is it nenefiting at all.be honeat with yourself.

im so sorry it sound horrible being away.
could anything be done to make life easier.
could there be more face time with home.
more visitations allowed from either firends or fmaily.
proper days where they could come in or be local so you could go locally to spend the day together.even to a loca hotel or bnb just sitting in a room together.i no your still injured but anything close that could work for accomadating them with you there?
writing letters. or journals.sound tiny but its the little thing that you can add now to your day just to keep you centred and calm
anything they can do to give you your own space somewhere?i quiet room.
do you have any idea of the availabiltiy of adaptions and physio at home have you checked these things out. to be honest id think this would take amonth anyway!