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.

This. You reap what you sew in terms of dedication to your own physo and hydro, and you are set up to dedicate your time to focusing on making strong improvements where you are. But it seems you are really keen to ignore all advice that does not support leaving. Quite understandable, but shortsighted.

sow!

I would advise against leaving without all these things clearly in place. once you have left you might find things never happen
I agree 100% with this as it is exactly what happened to me. I was discharged in a hurry due to bed pressures, though to be fair, I was keen to go. None of the proper discharge planning was done, it was all "oh you'll be fine tonight and we will get someone out to see you urgently". But it just didn't happen. I got some care eventually, but I had to fight for it, and other stuff we just gave up on. It might be better in other areas but here there is an absolutely massive disconnect between hospital and community services. Given you aren't in your local hospital and you are going to have complex needs I would say the organisation is going to be even trickier than average and it's really important that you are sure everything is sorted before you go. If my experience is anything to go by, once you have fallen down the cracks it is very hard to get things sorted out. Once you're not there, it's very easy to be ignored.
See how the MDT meeting goes. I'm sure if you are keen to go and it's feasible then they will be happy to gain a bed that someone else will use, but do look after your own interests and don't rely on promises.

It sounds like you’re wanting permission to go home, and I say go for it, with adequate things in place. I don’t mean thinking ‘I’ll do XYZ on this day; ABC that day’. Get providers found. Get a cleaner set up, get online grocery slots sorted.

then go home. Recover at home with support in place. It will help your mental health so much, and therefore your recovery

Hi Op

A few practical suggestions for when you get home.

If using a shower, I found a shower stool of 60cm high was easier to stand up from than a lower one. A remote controlled raise/lower bath seat was brilliant. Bought mine from thecarecompany.com for approx £220.

A raised toilet seat makes life easier. Just clamps onto your normal toilet. Have a grab rail on the wall and a liftable rail - similar to what you would find in a disabled loo.

A high bed is easier to get in & out independently.

A mobility scooter is more fun than a wheelchair.

I have a normal electric recliner chair which my husband made a raised base for. It's comfortable.

You can get various memory foam cushions to make seats more comfortable for your back, legs & bum.

Wishing you the best of luck & hope you get home soon.

There are lots of hydro pools out there

Where? Close to the OP? Doubtful.

Also

Curious regarding the physio. Where I am all patient have 30 mins individual per day plus several group sessions per week. Hydro sessions are booked on the need of the patient.

We also have one day a week with guest speakers surrounding issues such as skin, bladder, bowel etc. and sorting activities such as archery.

Patients also receive occupational therapy up to five times per week depending on need.

Also consider teh impact and extra strain on your husband and child having to deal with you as well as everything else (I know that sounds harsh!).

Give it another month and use that time to recover and put a home plan in place

Mental well being is so vital to recovery. As you're on crutches it would seem obvious home with your family is the best place for you recovery now. Even if you need a community hcp daily visit in the early days it all seems so very doable.

Best of luck op, do push for a discharge plan asap .

Already done. Ina sent. Claim adviser on the other side is on a jolly for a month. Solicitor can’t find anyone doing her caseload in the meantime. They don’t give a shit.

Can you fund some of the INA recs yourself?
Honestly, I'd be home before bedtime if you've got someone on the case.

They don’t give a shit
Welcome to the world of the personal injury claimant. I've lost track of the number of times I've said that over the last few years. Nobody gives a shit. Not about your well being anyway. It's a game about money, played by other people with you as a bit part. I gave up believing that anyone except me was actually interested in my recovery a very long time ago.

There’s four within an hour of me that I know of, probably a lot more. One is council owned. Not London

I remember your original post. Tbh i am so incredibly impressed you are (here) and have rehabilitated so much in such a short time! Well done you. I think using the time you have now to plan how to get home in minute detail with lots of lists of options and 'in case of... ' back up plans plus what and how you can outsource would be helpful. (Eg mothers help type, cleaner etc) xx

I’ve just checked with my solicitor if there are long term claim implications for early discharge.

there aren’t.

I quote:

“You are entitled to recover the costs of private treatment if you choose that route. The Defendant cannot say you should stay within the NHS sector just because it is free.”

so I’m going to self discharge on the grounds that I have chosen a private care route.

my next worry is we have already racked up £10k in extra expenses as a result of the accident. We can’t afford to keep doing that without some interim payments.

I so resent that this accident has been dumped on me. I hate the impact on my family, the pain, the determination and courage and time spent on something I never wanted. I try to be grateful, both for the bed and for my recovery but sometimes it really gets me down.

I am so angry on your behalf, OP.

I watched a friend / employee go through this and the length of time the compensation claim took, with attendant stress and endless processes was as emotionally difficult as the life-changing injuries.

It shouldn't be allowed, once liability has been established. Your interim costs should be paid immediately.

But very pleased that your solicitor has advised that you can seek private treatments. Go for it! Time with your little boy...no more to be lost.

Sorry if I've missed it but why won't they just discharge you as requested with a care package in the community including physio which is standard in a situation like this. What actual reasons have they given that you should stay as
an inpatient? it just does not make sense when every bed will be in high demand for those who have greater need or are hoist dependent.

I would not be paying for private physio when you are entitled to it on the nhs and every hospital be it large or small town sized places nearer to you will have a physio department. Good luck.

@Janiie parlpus state of NHS. Discharge to local physio has a 6 week wait list just to be triaged , not allocated or actioned.

i can discharge myself, I’m not a prisoner, I just wanted help to weigh my options before meeting to discuss them.

I used to work in a spinal rehab centre and have seen any patients over the years self discharge midway through rehab for similar reasons. All of them regretted it or their families regretted letting them. Some regressed, some stayed paralysed to some extent and some died because of it.

Spinal recovery is BRUTAL, really cruel and difficult and I have to applaud you for getting this far. I would recommend you to have a really frank discussion with the teams looking after you about how you're feeling and that you are close to going home. They will do what they can to make it bearable for you.

'i can discharge myself, I’m not a prisoner'

Yes but it's just a risk if you then had complications to have 'discharged against medical advice' on your notes, I don't mean regarding your claim rather other HCPs who will then need to be involved.

Just get your team to agree to discharge you on the proviso you will access private physio until the nhs referral is through. Then you will have community nurses informed who will be involved too.

I had a lengthy hospital stay when dc were little. It is absolutely horrible but as I said do it by the book to ensure you have community care support and back up if needed.

It is great that you've got this drive to get out and pick up your life, you're on the path now, keep on going. It is a long slog but getting support to transition into your home and what will work there is so crucial going forward. Best wishes I think this urge is great and its going to push you and them. With what you've been through there's a shorter time in front of you I do thinknthis drive is a positive sign for your recovery.

Yanbu.
I remember watching people looking out of the hospital window wishing I could be among them and asking myself if they realised how very lucky they were to be able to walk freely.
Go home but don't undermine your legal case if they try to say you went home early against medical advice therefore their client should not have to pay going forward..ykwim I'm sure.
If you do need to stay have you thought about some counselling ?Reiki healing?
could your dh do a countdown chart for your dc so he has a structure and can happily count off the days until mum comes home and in the meantime he could help get things ready for you,draw you some paintings for bedroom,do some tiny jobs etc.
four weeks is a very short period of time if it really does appear staying is your best bet.
you've come this far,it's taken amazing courage and determination,many tears and frustrations but you are nearly there,your new life is within your grasp,keep strong for a little longer,you can do this.
💐💐💐

Talk to the legal people helping with your claim. If you can put a package of care together that meets your needs they should be able to negotiate this and get the drs to endorse it. Hope you get home soon x

I would go home. I don't think you'll need to discharge against medical advice, I think your care team will listen to you. You seem to know you are ready and that's very powerful. My husband had a similar thing happen. He did much better once home, could do his hobbies, get better sleep, feel useful..
Very best of luck to you x

@Natty13 how much therapy were your patients getting? OP is getting two a week, not intensive brutal therapy.

I’m talking from our experience only and agree you need to have proper discussion with your therapy team before making decisions, but if they are like ours were they won’t be particularly helpful. It’s good to hear from pps about better centres.

The community physio referral isn’t made until you leave (in our area at least) so you will have that wait whenever you leave. DH just did as many repetitions of exercises they sent him home with as he could whilst we waited. This was a lot more than he did in the centre as I was available to help him, in the centre he got no help other than the twice weekly physio, which concentrated on standing etc rather than muscle building and relearning. When the community team came to assess him they were amazed at what he could do against what the centre discharge letter said he could do. They just hadn’t pushed him or had the time with him there.

If you have been going on weekend leave they must be happy your home is safe and adapted to your needs.

What do your family think? They know you and they know what the centre has done with you, they’re in a good position to help weigh up your options.