Discharge: Not really a question I guess. But we... - Headway


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Not really a question I guess. But we have today had a case conference with the rehab unit which my husband is in. We are in month 4 and a something since he left home. He has been in the unit for about 3 months. When he went in he couldn't stand, balance, his left side was paralyzed, he couldn't speak well he would get stuck on a loop repeating one word. He was still on a "small soft foods" diet" with his drinks thickened. Catheter in and without bowel control. He couldn't read, or write.

Today he can do all these things...wals with a stick, he can walk 200m in a session. With someone on his strong side as a guide. His steps are fairly small and shuffly but this can be worked on. He can do 4 steps. Up to 4 times up and down with a railing on either side. And he can use his phone and tablet. He can also read short things and do a bit of (not very legible) writing. He can also wash and dress himself, toilet etc.

So why when we asked for a date of discharge today did they say he was "halfway"? We asked about the original target and they lied and said they can't remember it's "on our system". We know it's the end of May.

Everything has been shambolic. He has not seen a neurologist in his time there or been assessed by one since the Acute hospital. Today a random guy in a suit appeared claiming to be the neurologist. We know he's not because the last one went off on stress, the next disappeared and there hasn't been one since aside from a jumped up yappy baby doctor who is the general doctor.

We were told that they had spoken to a neurologist at the main hospital (not really a consultation...just the neuropsychologist who we have heard little to nothing from). They want to put him on levadopa which I understand to be a type of dopamine because he is slow moving and something else...which is his condition.

We can't get a straight story about anything out of them. We can see my husband sort of going quiet and depressed because they are doing less with him. We figured that the end of may isn't far. Today they alluded to the fact that he would be there for potentially 3/4 more months. We think they are trying to cover themselves. They have said it depends on whether we can give him the dopamine in community or if it has to be in the hospital. They are NOT giving him that drug to cover their backsides and to tick a box. We won't allow it.

So we want to discharge him and work out a therapy plan out of the hospital using both NHS (to tick the box) and private therapists. I mean he sits all weekend doing nothing. He says he's bored stiff. Not even a walk around the ward or anything. Just up, dressed, toilet, chair. No wonder come Monday he's sore and tired and not as good as he should be. I'm fed up with this hospital and they have developed a belligerent attitude towards our family because we won't sit back and leave them alone to do whatever they want.

No information on treatment plans, goals, all the things that they claimed would be happening and we have been ignored, badmouthed and avoided... nothing but nonsense week in and week out.

Thoughts? How would we go about this? I'm going to contact the nurses at headway of course. But we are certain there is some sort of borderline medical malpractice going on. Not the therapists, but the doctor and his nurse cronies.

Apologies for any typos and we'll done for getting through to the end of my rant. 🎉

22 Replies

Hi. You could contact your local Patient Advice and Liaison Service (PALS.) Just Google PALS for your area. They work specifically to help patients and relatives when there is something to sort out and they know exactly who to contact and who has the say in making decisions. My local PALS has helped me out several times. They know exactly how the system works. Best wishes.

ored13 in reply to Marnie22

Thanks Marnie. I think if we had known what a shambles this would be we would have been in touch with them from the beginning. But we foolishly thought that this was a good place which was organised and dedicated. There are some good Staff, some staff who have been outwardly hostile and some who swing from tree to tree depending on what you are after. So we are going to have to bring out the big guns I think once more.

Marnie22 in reply to ored13

I hope you can find a way forward that works for you all.

ored13 in reply to Marnie22

Thanks. I've simmered down a bit after the meeting this afternoon. So can think clearly over the next week.

This post churned up all sorts of emotion in me. Six years ago we were in a similar position with our son who was recovering from a severe brain injury. He had been transferred to a brain injury unit following intensive care and was unable to do anything really at this time - apart from breathe independently.

Over the months he was there he surprised us all by learning to function as a human being again. The abilities he regained in those months were crucial to his long term recovery and we will always be indebted to the staff there. His sheer determination had a lot to do with his progress as well but the unit was steering his recovery plan.

However, there came a time when it seemed to us that the unit was failing him. He was depressed, wanted to be at home with us, started to refuse therapy and was left in his room for long periods. We fought hard to take him out of the unit on day trips home but it was all agonisingly slow.

Our son also had diabetes and this was being poorly managed by staff who were not prepared by the complexity of his needs. I ended up staying all day, every day with him (a luxury you probably don’t have in these strange times), monitoring his food intake and his four daily injections of insulin. Eventually, after some blissful days back at home, it became clear what we needed to do as a family.

We prepared a very good case for his health, well being and safety, related to the diabetes and presented it to the team. The governing board had to agree that he would be better off at home.

Back at home, his progress increased greatly. He was secure and happy. For our son, it was the right thing to do. Seven years later he lives independently, works, drives and is beginning to get his life back on track.

Be aware that NHS provision will be very scant once you leave hospital but equally, if you have friends and family supporting you, as we did, you can keep the stimulation going. It’s a team effort.

I can feel the frustration in your words - so painful for you to experience - but stay calm, stay motivated, research how you will meet his current needs if he comes home and if you feel this is the right thing for your husband, make your case.

I wish you well.


ored13 in reply to Elkay_1954

Thanks for your reply Elkay. Imthere is comfort in knowing that I'm not just throwing my toys. I was incredibly frustrated and angry yesterday that they wanted to throw yet another drug at him and were unable to explain it, with yet another member of staff absent. And that is the member of staff who had thought this a good option. We as a family feel incredibly uneasy about him being in there. We were hoping that yesterday would bring some light at the end of the tunnel, but they seem to have made the tunnel longer in an attempt to cover their backs. And yes, like your son he is regressing somewhat. He looked amazing about 4 weeks ago. Bright eyes, clear skin, really alert. And when I saw him yesterday on the screen seeing more of his body than just his head I thought "you look puffy and unhealthy". He looks closer to what he looked like before he had his collapse. I felt sick afterwards.

I won't lie about feeling really frightened and stressed about having him home. But I'm not alone here. I have a supportive community and his family (though they don't live in the same area) are supportive and have plans to be involved in whatever it takes to get him back his quality of life.

So we are starting today with a bit of research so that we can draw up a treatment plan of our own using private therapists and possibly investigating we of the alternatives. I don't want to miss out on this time while things are starting to open up again, including close contact services. If another wave of COVID/restrictions hits we will have missed out on vital specialist rehabilitation.

We as a family are tired of all the random box ticking and posturing going on in that unit.

Thank you for sharing your story it means a lot to hear others' experiences be they positive or negative. It's amazing and heartening to hear of how your son has progressed over the past few years. ❤️

Hi orid, rant and typos are ok. If you husband has made this amount of progress, what is the goal of progress that the service expects to achieve above what he has achieved to date?

As you said about speaking to Headway, they will help you either formulate a plan of action, or be able to explain the treatment.

Levadopa is used in relation to parkson type symptoms following brain injury, but their are arguement about if home treatment is possible does seem a bit lame. There are oral medications or patches that is more subtle.

I'm sorry the communication issue has reared its ugly head again. They need to justify the proposed treatment, not just expect you as his next of kin to accept it, but if you can't see the benefit, they can't expect you to accept it.

Talking to a neurologist at the hospital, I would be too concerned, they work in teams under the supervision of a consultant, but generally they are well versed in that speciality.

The fact that your husband reports being bored especially at the weekend, is suggestive that he is not being stimulated enough.

Any move home needs a multidisciplinary approach, to make sure that you have the support in place for you. Headway will be able to talk you through this.

I'm really sorry that you have come to this point again with the rehab team. PALS might be able to broker a way forward until you can get everything in place should your husband return to home.

ored13 in reply to Pairofboots

Thanks Boots. We have sent an email today asking very specific questions about this new turn off events and had a panicked call back. They had spoken to my husband about it again today and I don't like the fact that they're whispering in his ear about it. Either and then claiming that they're not discussing it with him and it's "new" information. Grrrg, don't get me started. But yes hopefully get to speak to one of the Headway nurses later on this week as well as to the neuropsycologist (can't spell anymore, in done with correct spelling for the day it seems). So we can hopefully end this week with less rather than more questions about this.

Pairofboots in reply to ored13

Can I ask? Is the rehab totally under the NHS, or is it part or fully private funded. I ask because I have only found this type of action in private hospitals. We used to have a hell of a job prying our patients out of their grasp when we were told to bring patients back from "outer borough" placements.

ored13 in reply to Pairofboots

It's completely NHS. I just find it hard to understand how they have gone so long with little to no communication with us on anything. No treatment plans or goals or information on what he's doing. Nothing. They took him in and chose to ignore the fact that he had family. Aside from the speech therapy team we have had no contact unless we have thrown out toys and made demands. It's been exhausting. We were meant to have a case conference in week 2/3 and u think it was week 7 before we had anything and that was because we had been at them about staff mistreating him. Walking away when he was on the toilet and leaving him there for ages. Eventually having to pull himself onto his wheelchair and bang on the toilet seat until someone heard him. No apologies or acknowledgment of this as far as I remember. So many issues. I have very little faith left in the NHS at the moment.(Rant)

Pairofboots in reply to ored13

Good rant, better to let rip than to bottle it up.

I know my many years ago, when I was training, I was initially told I was taking too long with my assigned patients. That was different times, and a different type of ward. But there never seemed to be enough staff for the amount of patients. I refused to juggle patients, as some would. All those years ago we were extra hands, so I haven't got a clue how they managed when st/n's weren't there. That was also when there were large wards, and everything had a time by which certain tasks had to be done.

A rehab service, at least on week days should be top heavy with staff between 9 to 5. Evening, early morning, and weekends the so called "professionals" only work 9 to 5 (professional = OT, physio, therapists. I don't know why nurses are not included).

It saddens me how the NHS has been destroyed by successive governments. That is no excuse for the issues you raise!

I think it is back to PALS to help you get what you need, there is no excuse why you shouldn't receive a copy of the treatment plans and these should clear justification for the treatment.

If your husband has reached his optimal recovery in that setting, then there should be a plan for the next phase, which I would assume is home care.

I'm sorry that you have to keep banging the drum to get updates. The Trust that covers the services that your husband has been treated need to know that this poor communication appears to be indemic across the Trust, PALS can help you escalate this as a grievance. I know that this probably wouldn't help in the short term, but it might help others that follow.

ored13 in reply to Pairofboots

There will definitely be grievances put in. This hospital was given glowing reports even by a friend who's husband was under their ncare for a few mo the in 2005. Seems things have changed. We this morning received an email from the new consultant basically saying that they are going to start the drug. However the voicemail I received yesterday said hat they would not be looking to start anything until the family and James had all the information. This morning the new consultant slunk over to my husband and basically told him that they were starting him on this magic pill. Going to have a chat with headway this afternoon for some advice.

Pairofboots in reply to ored13

Keep me posted. The NHS was very different in 2005, coming up for 12yrs Tory strangulation has taken its toll. I don't like getting political, but fact is fact.

ored13 in reply to Pairofboots

👍Indeed. Will do!!!

Well, me I would bring him home, yes the package of care will give them admin time to sort out and he may be home for weeks until home visit but under NICE guidelines and his GP be first with all queries anyway (although Brain Injury not there specialist area) they still have a duty of care to ensure support in place and they will get medication sorted (believe)

My husband was under DOL and in two hours after challenging it was took off and I picked him up. We suffered with first national lockdown no home visits for 10wks but hey hes progressed more at home than he would of, behaviour part of ordeal and still traumatised from experience but I have no regrets, I know my husband better than he knows himself, but I admire him so much but still very puzzled how he survived from how he was and where we are now.

You sound like your mind made up and what has been presented from recent meeting. Yeah will be tough though when hes home, nothing will prepare you for that I'm afraid however hard you try and vision especially the first few months your be on your knees, but will ease by 6th month with adjusting, but were 13mths in and still adjusting but good progress with coping mechanisms all round.

Good luck x

ored13 in reply to New_beginning

Whoops sorry the reply below was for you!😁

Honestly yesterday I could have driven there and loaded him into the car. Today I know thatb we must think it through carefully and if they won't give us some decent information on time frames etc and continue to fluff us about then we will start taking steps. For more advice from Headway and a conversation with the person who thought this medication a good idea. Having heard about it, my husband now thinks that this tablet is the magic pill that is going to make him walk fluidly again. He was quite annoyed earlier on and told us not to say anything about the medication because he wants to walk. I'm raging at this because they are up-selling him a dream. Tried telling him today that there is no tablet that will fix his walking...just WORK. Didn't seem to believe us when we told him this. So I'm doubly annoyed that they thought it an appropriate thing to whip out yesterday during that meeting with him present.

New_beginning in reply to ored13

Yes medication was issue with my husband when home to the point I had to hide, he was very confrontational about it smashing house up, aggressive to a point I felt community nurse should give meds every 2hrs he required was like 16 tablets a day. Took 15wks for him to comply and reduce meds just on 2 now. He was fixated on the white tablets given to him constantly at hospital, it was melatonin to make him sleepy as he just kept obsconding.

ored13 in reply to New_beginning

Awful. Honestly that we have to fight so hard to be heard is beyond ridiculous. We are the ones who are going to be living with and caring for them. Why can't we be heard?

Dear ored13, like Elkay_1954 your post stirred up lots of emotions. I write as a patient. The comments on here are brilliant. There are those of us here a little further ahead on our own paths in this.

I'm sending you my best wishes - it's so sad to read what you've been and are being put through. You are not alone in this and you weren't really ranting either! I don't think people realise or could imagine the hoops to go through and how you reach a point where lack of plans or coordination between staff/teams/services and errors and sloppiness and inconsistency becomes totally frustrating. Your husband has made such amazing progress and that takes support and energy to continue. You are his 'team' and need to be heard and included by the clinical or other staff. It is tricky when some have 'insight' and then others don't - that's in turns the patient, family or medics.

You are right in what you say, you need to keep the belief in yourself and do whatever gets you through and to keep expressing how you feel. That might mean being a broken record to get heard and get what you all need.

Sometimes rates or expectations of recovery is something disputed, unknown and hard to keep positive through. Having periods of depression when it slows or support is absent is common.

I had the community pulmonary team visit me today as I have asthma. We went for a short walk and I got feedback that nearly made me cry as they noticed I self-corrected well, have left side weakness and balance using my crutch as needed. I really needed to hear this as I compare myself subconsciously to the 'before' me. This has taken me many years and I'm still plugging away with exercises and my own rehabilitation. I filled them in on having meningitis and encephalitis in 2014. The nurse reflected that I am essentially the manager of my own healthcare and need a 'cheerleader' as this is an added burden for people in recovery. The plans and theory of the input I need from neuro, neurorehab, pain management, physio, hydrotherapy, mental health services, GP and social services has been pretty patchy, short term or absent. But there are some people out there who will help. You may have to keep trying to access services locally to see if you can get support - these may be funded or called different things to 'rehab' and Headway might be able to tap into these. It is hard to keep engaging when things are so chaotic and you may get 'signposted' round and round.

Keep as strong as you can, keep posting, keep asking, keep plugging away, keep being a pebble in their shoes xx

ored13 in reply to 0101

It's incredibly disheartening to hear that there is a bit of a theme developing with NHS care. However we have resigned ourselves to the fact that private is going to be the better option, just portioning out the money for the sessions and working at home as well. I've heard today that my husband can discharge himself. I think thisba good idea and not because he won't get a proper rounded plan for discharge. And what little support we would have had from the NHS including having speech therapy and OT (not very often but still something), we would lose this. The pay off is that we keep battling, fight about this medication that they want to put him on. And so on and so on. The list is endless and we're just so tired. I hate to see him going backwards and just sitting in a chair all weekend. Today he said that his soup was amazing and always is. He hates the food in there so sure he's getting that little bit institutionalised. Didn't even complain about the turkey tonight. He's just accepting and merrily sitting in his chair smiling when a member of staff comes past. Ugh there are so many things I want to complain about. I just want to chapter with the hospital to be over. Though I know there are harder days to come when he gets home.

Thanks for sharing your story. It also gives an idea of timescales. My husband is not ready to hear how long this is going to take him. Not by a long shot. But hopefully we can get to the point where he realises that work is the only solution to what he's facing. Practicing, pushing etc. It's not really in his nature to do this. But we have to plug on. ❤️

0101 in reply to ored13

I didn't expect a reply - thank you - you have so much going on. I think one thing you can try to keep a hold of at times is hope. That little flame may get dashed, then flicker alight again and need other people to keep it stoked. I think if I'd known it'd take so long it may have been easier and my frustrations that I wasn't 'better by now' in the first few years may have been less. And my disappointment with clinicians who then give up - when there's evidence that you can still actively recover for many years after with input. Knowing 'you' are still 'you' does matter. Much of it is invisible too - you can't necessarily see confusion, fatigue, aphasia, pain or weakness. This site is great - you can ask general or quite specific things and reading through other answers can be helpful as it's others going through similar.

Much medication does seem to be trial and error so it helps to have good relationships with those dispensing things. That's not so easy when people change jobs and notes aren't read and you're rushed.

Not knowing what you're facing makes it harder to be motivated to push through, so be kind on yourselves if you lose momentum or feel overwhelmed.

It is disheartening, it makes me angry, but there are others who are fighting this too and although not exactly a comfort to you now, coming on this site at times has been a lifesaver. NHS or private - just get what help you can for you - from wherever. I pay through the nose for some things and that's what I think many don't realise. Whether you can or should is irrelevant when it's that or wait so in effect not get the care you need at the time you need.

I've had some bad times in the past 7 years, but I'm still here and carrying on. Sometimes just getting through til the next day or week is a goal in itself (cheery aren't I?!). Then you look back a bit and realise how far you've come - this is why celebrating your little victories is so important - and speaking to others on here in similar boats. I sound far more zen than I feel at times.

I agree that getting help after hospital once discharged is tough but your local health and social care services are under some duty of care re speech therapy and OT. You can have this delivered in the community if there is enough evidence you still need it. Some of that is now contracted out - hence the inconsistencies in the 'offer' - so you may need to research and push for this yourself - and ruddy well keep trying if you don't hear. It helps to have a few willing souls like GPs willing to coordinate and chase or write letters or make calls and to check in and monitor you in the 'community'.

I hope him sitting and just accepting for a bit is just that - as long as he's smiling not crying or distressed that's maybe ok for now. There's a bit of grief maybe mixed in along with shock or acceptance and that takes a while to adjust to. For each or both of you. Exhaustion doesn't help.

Yes working at it - but also a lot of relaxation and gentleness and care built in. Fun too, as when you're pushing away at a boulder up a hill, then it rolls back down, it's easy to be too hard on yourself and a smile and a laugh is often in short supply but really is the best medicine. It can get lonely at times and I hope you have enough support - this is why being able to post here is great.

If you need a break, say so, and keep talking :-)

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