6 replies to this topic

[joey]

My fiance ross had his accident in 2004 and has been out of hospital for well over a year now. I was just wondering if it was normal for people to get no help at all once leaving hospital. He didn't really get the best care when in hospital at james cook spinal unit in middelsborough so it angers me that now he is out still no one helps people in his situation. Does anyone no where people can get help in newcastle anywhere so that ross may have a slight chance of some improvement.

thankyou

[Lucydog]

what sort of help do you need? Whats the level of his injury? How independent is he? Fancy meeting for a coffee? Ive never had any kind of help as obviously Im just not disabled enough! Id love someone to come and help me take my 2 year old to the park but its not going to happen. We just all get by best we can. I had very little help in the early days, but funnily enough I get a lot more now Ive moved. I think it all depends on where you live and your GP

Cheers

L

[russ1]

joey, on May 31 2006, 01:42 PM, said:

I was just wondering if it was normal for people to get no help at all once leaving hospital.

Sounds about par for the course - most people just get dumped out into the community. I wanted to continue with both physiotherapy and hydrotherapy after I left the spinal unit - No chance, the community physio came out to visit me and explained that she couldn't do any actual physitherapy but could show me some exercises to do and explained that hydrotherapy wsn't available on NHS but gave me details of a couple of pay per visit private hydro pools. The community OT was pretty good but I didn't qualify for a home improvement grant so she sent a man round to put up some grab rails and gave some good advice, organised me a electric bed with pressure relief matress and a shower chair and that was about that.

It's shocking! It does seem that some of my friends who are incompletes get a bit more support in terms of ongoing active physio as there is improvement in their function but without exception all the completes I know are waved goodbye at the door and after that it's yearly check-ups in outpatients or the odd chat with the GP.

Not much help I'm afraid but at least you know you're not alone.

[Avocado Baby]

Hi there!

I can completely empathise with you and it makes me angry! I'm 24, have had Spina Bifida since birth and my family and I have pretty much been left to get on with it. They either seem to offer 24 hour care, which gives you no privacy and doesn't help if that's not what you need, or not much help at all!

The worst time was when I had my spinal fusion (12 years ago) and coulcn't do anything at all for myself. My mum had to do everything for me. Wash me, dress me, put me on the toilet and even carry me upstairs in my wheelchair (she ended up with a bad back!)

I've just come out of hospital after a laminectomy and fortunately am not really any less mobile than before. I did make a fuss though to make sure the provisions were there should I need any help. It shouldn't be that way, but you do have to be persistent and make a fuss to get what you need. The squeaky wheel gets the oil!

[dom]

hi
all above threads are sadly true,it seems to me that when you're in hospital there is loads of concern but at the exit door a lot of us are forgotten

[Lucky]

To be quite honest with you..... The after care is Pefetic when you leave hospital, the just get you out ASAP and then PT & OT is.....well, crap. Sorry. Thats how I found it.

[mttb14]

John was left for 8 years with no physio etc, and then a new Rheumatologist decided he should have intensive physio, 4 afternoons a week for 6 weeks.

I told her it would kill him, but they said he had to go or it would be classed as refusing help.

The physio called him in for a consultation and said there was no way he could do 1 afternoon of 4 hours, so now he is having 30 to 45 minutes once a week, and that is nearly killing him, his biggest problem is chronic pain, muscle and tendon release problems, and really bad spasms.

The physio seems very good, but they are totally impractical, he is only doing light work with a big exercise ball and he is really struggling with his left side. He has been having spasms during the sessions and he is always in agony during and after the spasms. She told him that when ever he has spasms from now on, we have to work through the spasms, he said sometimes, especially when it is winter, damp, cold etc weather he has them for hours at a time. One builds up, pulls his shoulders rounded and then his body starts to shake from the neck down to his feet. They have lasted 8 hours continually in the past, and they are always worse when his body is relaxing and trying to go to sleep. How the hell are we supposed to do exercises in the middle of the night, when we both need some sleep.

The impractical ideas they have are unreal.

In two weeks time they are going to use the hydro pool. So I don't understand how Russ was told that the hydro pool is not covered by the NHS, ours in South Wales are.

Anyway, John is 3 weeks into this physio, he is in more agony now than before, so we will just have to see what happens.

Nobody has been there really for us in the past, it has all been left for us to work out, and then I found this site which has taught us more in 4 months than we learnt off the doctors in the last 8 years.

Maria