My disabled uncle is in hospital & we are finding it impossible to get/give information on him.What can we do?

[FuriousGeorge]

My uncle is 61,registered blind & deaf,has spina bifida,cerebral palsy & learning difficulties.He lives very happily in a group home,but went into a diabetic coma just before Christmas & was admitted to hospital.He had a bad bruise on one shoulder,from falling when he blacked out & was looking very poorly,although concious by the time we got there.He was discharged back to the home on Christmas Eve,only to be readmitted via ambulance the next day,after his blood sugar levels rocketed.My mum spent Chritmas night in A&E with him & was horrified to find that he had previously been discharged with a broken arm.An X ray had been done,but no one had checked it before discharging him.The 4 Drs who saw him in A&e were equally horrified & said he should have never been discharged.As my uncle was weak & ill upon discharge,the staff at the home had been helping him & up & down by holding his arms,so he must have been in agony.

He is still in hospital & my mum can't find out what is going on & what treatment he is recieving.Evert day she tells the nursing staff the he is blind & deaf,but the next day there is another member of staff on duty who claims not to know.He has had bloodtests for something,but we don't know what, as the nurses don't know & the Dr is never available.He has been in bed for a week now & no one seems to show any interest in getting him mobile again.My mums fear is that he will loose the ability to walk & the home he is in won't be able to have him back as the are not equipped to deal with bed cases.

I feel that,although they are very kind to him, they are 'passing him over' because of his disabilites.When told that he normally gets up,washes,dresses himself ect,they were surprised.I'm sure that because he can't speak much & has learning difficulties,he is being classed as not worth bothering too much over.Sadly,if we don't find a way to help him soon,he will loose the little bit of independance he has got.

Sorry for the long post,but I don't know where to turn to get some answers & find out who to speak to to make sure he isn't just left to lie in bed.I'd go down there myself,but dd2 has chicken pox.

This sounds terrible
If I would you , I would arrange an appointment time when you can speak to his doctors, demand a referral to the physiotherapist and occupational therapist and if no sucess demand a case conference( meting of all profesionals family and patient ) to discuss plans and treatment.

Your Uncle is entitled to full assessments and treatment of all his conditions and rehabilitation to help him attain his maximum potential prior to discharge.

If I were your Mum(is she NOK) I would start getting stroppy, this is not accecptable in modern society - we are all equals and deserve to be treated as such

How awful! Get in touch with the patient liason service (PALs) at the hospital (check the hospital website or phone the main switchboard) they should be able to arrange meetings with his doctors and help you all through this

either ask for a case conference or ask for number of consultant looking after him. ring his secretary and ask for an appt.

Demand to talk to the sister of the ward and get it sorted.

I agree, as a nurse and the mother of a little one with SLD, this worries me greatly. Its time to get stroppy, involve the ward manager/departmental matron and patient liason services. Document aspects of care, and episodes, with dates, that you aren't happy with. Find out about their policies on managing vulnerable adults. Just mentioning that phrase should worry them into some action. Good luck to you and your mum, best wishes to your uncle for recovery soon xx

Not sure, but think every patient (and their loved-one/carer?) is entitled to see hospital social worker?? Ask PALS at the hospital, if there is one, they should be able to tell you. Also, before your uncle is discharged, there should be a "hospital discharge process" in place, which should mean he continues to receive care should he need it once he has left the hospital (see www.nhsdirect.nhs.uk/articles/article.aspx?articleId=534§ionId=23. Also, perhaps get in touch with your local carers centre for info/support (see www.carers.org. HTH and best of luck for your family.

Is your mum his Next of kin, if so request an appointment with the consultant in charge of his care to find out whats going on & raise your concerns.
Does your Uncle have a SW who should be working to make sure he gets the best care - if so shout & make them work.
This is something that scares me about ds2's future, its good your Uncle has you to look out for him.

sorry, don't think the link worked, so maybe easier to copy and paste the below (taken from NHS direct);

www.nhsdirect.nhs.uk/articles/article.aspx?articleId=534&sectionId=23

xx

Sorry but you will have to start making a noise if you want things to change

Ask to see the consultant AND ward manager

Give them a full description of what his abilities are now and make it clear that if he leaves hospital having lost these skills (for reasons not related to his medical issues) you will make a complaint and take it as far as possible.

Ask them to document each and every intervention.

Unfortunately where vulnerable people are concerned, general hospitals sometimes are woefully inadequate. makes me sad to say this as I work for the NHS but a lot of the time this is the sorry state of affairs.

Good luck!

Hi haven't read all the answers but would suggest you ask to speak to the ward manager where yuor uncle is. Make an appointmentif neccesary.

Thank you,thank you,thank you!

I'm going to print this off for my mum,it is really,really helpful.

She had better news today,a OT had seen uncle & gotten him into his chair,but he refused to walk.They suggested that two OT's see him tomorrow,whilst my mum is there & see if they can persuade him to try & walk again.

She has rung both his SW's but not managed to speak to them yet.She has spoken to charge nurses/named nurses/ward sisters every day,but each day it seems to be someone different & no one seems to know anything.His notes haven't even been updated since 30th Dec.He is currently on the Tropical & infectious disease ward because it is the only bed they could find,so we are a bit worried that he'll come home with more than he went in with.

Mum is NOK,doesn't drive & lives in the sticks,so going to see him takes all afternoon on buses & walking every day.I can't go with her because of infectious dd2,which is a nuisance.Dd1 got chickenpox the day he was first admitted,so I've not been able to help as much as I should.

However,your help is much appreciated.I'll get my mum to kick some backsides!

At a minimum I would insist on a summary of his current condition being put into his notes, I can appreciate how, over Xmas, continuity of staff is going to be tricky but there are some basic facts that can easily be noted down, and should be.

If the nurses don't know what the blood tests are for, ask to see the notes and write it down. We will figure it out for you.

Don't feel guilty you couldn't help more, what could you do? Take the little ones and infect a bunch of vulnerable people with chicken pox? Of course not

Definitely speak to PALS. Tell your mum to ask all carers to repeat their names, and write them down; I know when dh has been in hospital the bewildering array of people who've been past, and said their names once, if at all, has been too much to cope with. Yet two or three years on I am expected to remember the name of every doctor when giving a new history

The discharge with a broken arm is MP-worthy, in my view.

hi FG ben thinking about you and your Uncle, any progress?

Not sure if this is feasible but your DD2 would be fine to go in the car to give your Mum a lift to the hospital, or collect her. Maybe only getting the bus one way would make it more feasible for her. Anyway you are helping - you are obviously supporting your Mum.

We had this when my grandad had a stoke, he was taken to hospital and after 6 weeks of being fob off or ignored, broken promises of the consultant coming to see my nan to tell her what was happening. We ended up threatening to get a solictor if the consultant didn't speak to us within 24 hours. He suddenly found time to tell us what was happening .

I afraid you mum/family need to to stroppy, I would also be inclined to make a poster over his bed saying that he is deaf and blind.

Hope you get some good news soon.

Dreadful (and as the mother of someone with severe learning difficulties) and frightening. I don't know how to approach it - but I would suggest something like lizziemun and minimilk suggests. Find out who is in charge of his care (presumably he has a named consultant) then fire a rocket off in their direction. He's lucky he has you both to look out for him.

How difficult, hope things are now better. It sounds to me like he was on a general medical ward, and staff do NOT have appropriate training in how best to help people with learning difficulties, and rarely understand their nature. This is not their fault, it is just the way it is which doesn't make it right.

A referral should be made to physio and OT as a minumum. The way it works in our hospital, there is a discharge liaison nurse whose job it is to organise and co-ordinate discharge. The OT's and physios usually do a home access visit prior to discharge to see if anything needs changing so the patient can go home safely. A social worker should be involved as part of this team.

Most hospitals have an Intermediate Care team who can offer physio, OT and sometimes SLT if appropriate for the patient once they have gone home (and it isn't appropriate for everyone).

If you have issues with ward care, take it up with the Sister or Ward Manager. If you have issues with medical care or lack of information, take it up with the Consultant. If you want someone else on your side or don't feel they are listening, try PALS. Good luck!

Thank you all again.It is lovely that so many people are thinking about my uncle.

My mum has saved this thread,so she can refer to it if need be & passes on her thanks.Things were better yesterday,he was due to be moved again (bed shortages)to a day surgical ward,but hasdn't been moved by 3pm when mum was there as there were no porters.On the plus side,the OT had gotten him up & had him walking around the ward,so he is mobile again.The home have said that they can only have him back if he can climb the stairs,so mum has askede the OT not to rudsh & discharge him until they are sure he can,because if he has to be readmitted,the home will probably say that they can no longer cope-her biggest fear.

I had forgotten that he currently has a catheter in his groin & mum asked if ,as he was going to be moved to a surgical ward,was something going to be done about it.She had seen a consultant urologist 2 weeks ago,who said he'd want to see Uncle to sort out what could be done,as he has major problems weeing.The 2 weeks are up today.Mum mentioned it to the ward sisier,who said that she was new to the ward,didn't know anything about it,but would investigate.By the time mum left,she hadn't gotten back to her,so we will see what today brings.

I have been dropping my mum in & out when I can,but it clashes with school times & mum won't ask for a lift,so I have to pretend I'm going that way anyway.

I hope my Uncles experience hasn't worried those with DC's with leading difficulties.We have been quite overwhelmed by the kindness of staff,nursing assistants ,Drs ect.Even the other patients & there visitors have bought Uncle grapes & updated my mum on what has been going on in between visits.

I'll keep you all posted as to what happens today.
Thanks again.

That does sound more positive - especially the bit about getting him walking. I am sure that will make a great deal of difference to him and his rehabilitation.

And I know what you mean about hospital visiting times and school times/children's bedtimes. My Grandad is in hospital and the visiting times are 2-4 and 6-8.

FG I'm pleased to hear things are going fairly well. Keep us posted.
And how thoughtful of you to be aware what a worry this is for those of us with LO with SN. Thanks for the reassurance, I'm glad your uncle is being treated with kindness xx

Furious, substandard care of people with LD is a big big topic at present (I am a salt working with people with LD). Two big reports just out with key recommendations.I have them at work but will try and google..

This is one...

This Mencap report death by Indifference is more directly relevant.

Furious, also worth chasing hospital to get a learning disability nurse to see him - anyone with learning disability should be cared for or at least have input from a LD nurse who can advise the other staff of his needs and ability. (My sister is one.)

So sorry he is being treated in this appalling way - agree with advice to get PALS (patient advocacy and liaison service based at the hospital) onto this. Sadly many hospitals have bed and staff shortages, patients end up on the 'wrong' wards where staff don't have the expertise to care for them - you need someone on your Uncle's side, watching out for him and trying to sort through the mess.

(A nurse on another thread said a SCBU nurse had been sent to work on her acute medical ward - poor woman hadn't worked in adult care for donkey's years.)

in response to the op - an i have only skimmed thru a few other posts, yes he should have a LD nurse for his immediate care needs, also contact his social worker - he will have one because he is funded to live in the group home, and also get his most recent WIN/review/person centred planning meeting paperwork (family, social worker and home should all have a copy) and take a photocopy of it to the hospital, requesting a meeting with the ward manager. This should make his abilities and needs clear.
You could also discuss whether some of the staff who support him at the place where he lives could be drafted in to spend time with him at key times in the day whilst he is in hospital (especially if they are still getting funded for his care)
does this help at all?