19 replies to this topic

[mblm07]

Hi All,

My brother had a tumor on his spine removed and is currently paralysed below the waist. This started 8 weeks ago and he was transferred from Kings to our local hospital a month ago.

The problem is he is not getting regular physio (40 mins twice a week) and we are concerned this may be detrimental to him gaining any movement in the long run. Unfortunately we are in the hands of the NHS and Stoke Mandeville tell us they have people waiting from June so it will be a long wait.

I wondered if anyone would be willing to share their experiences/advice on wether not working him enough physically is going to be bad in the long run and the frustrations/timescales you folks had to endure before a space become available in a specialist spinal rehab hospital.

[PsychoSimon]

Hi,
I'm sorry to hear of your problem.
I was in the midlands centre for spinal injuries a year ago after my accident. While I was on bed rest I had stretches done every day, and when I came out of bed I was in physio every day for the duration of my staythere. An hour a day, every day. It may have just been stretches, or it may have been doing weights on upper body and legs. I don't know as it was any help to getting anything back, but it stopped me getting tight etc and it prepared my arms for the great outdoors with the chair.
One thing I did do is to see an excersize therapist when I left hospital, because as soon as I left the physio stopped.
Is your friend on bed rest or up and about? They may not be giving him physio just yet because of a fresh injury/operation? Not that i'm sticking up for the hospital, he should at least be getting stretched every day...

[mblm07]

Thanks for your response, not being a specialist spinal unit our local hospital is trying it's best (the staff have been great) but the physio did say in a perfect world gym am/pm for an hour each day - but he also said it's not a perfect world! and they have many patients.

We have resorted to asking if we can do stretches with him around his bed when we visit, we go every day so that may help - the physio will let us know. His legs have locked a couple of times after he has been in his chair for 6-7 hours and require manipulation to straighten them again.

It's just so frustrating when he is holding a bed, which probably costs the NHS as much as it would by making more beds available at the specialised hospitals. I get very annoyed when we are told they have surplus funds this year in the NHS, but no beds are available to rehabilitate for 6 months plus <RANT OVER>

[Angela250153]

Read an article in the Saturday Mail a few weeks ago that the NHS is not giving physio the credit it is due and have cut the resources for it. Very short sighted.

That said I was sent from Atkinson Morley, which is now part of St. Georges, back to Kingston after my laminectomy and ended up on the orthpaedic ward. The physios there did their best in having me stand in a hoist for a few minutes a day, but in retrospect it would have been good if they had given me some bed exercises. Fortunately I could move my legs slowly for a bit and did my own thing.From Kingston I went to Roehampton for rehab. Was there for 3 months and got 1 hr physio per day and no other treatments, but was allowed to the gym after a couple of weeks on work on the cycle first with motor going, then peddeling myself. Though not specifically a spinal unit they did a good job and I am now walking short distances with crutches. However all treatment stopped dead when I was discharged.

As I could not drive until I was assessed by a mobility centre, got a new car and had it adapted all I had was doing were my exercises at home. Now I am driving again my GP at my instigation has referred me to out-patient physio at St. Georges to get some much needed hydrotherapy. Hopefully I will soon be allowed to use the pool in the evenings when I can go in my own time.

If your brothers GP is ok speak to him/her as they can sometimes get things sorted a bit quicker. Also check for an alternative rehab centre in your area where they have neuro-physios and see if he can get in there.

BTW your brother should not sit in the wheelchair for 6-7 hours at a time. I found lying down for 1/2 hour every 2-3 hours prevented my legs getting stiff and locking.

Edited by Angela250153, 30 November 2007 - 07:46 PM.

[silone74]

Hi i was in pinderfields hospital and i had leg stretches while on bed rest every day then when up i would go to gym at 8.30am come back to the ward at 12.00 then back down to gym from 13.00 to 16.30 that was every day except weekends the physio's would have us learning transfers then stretching,standing in the standing frame,weight training,wheelies,going up curbs and back down,every transfer in the book,played table tennis,basket ball,rugby,tennis the guy's that where in similar situations to your self also did gym the same time as we did doing the stretching and weights it is important to keep the legs supple and stop drop foot while in bed if not it will slow down the recovery as the legs will need more work when they start moving again,in my opinion a spinal unit would be the only place that the physio's know how to deal with this situation normal hospital phyisio's although they are good at there jobs they are not used to seing a spinal case day in day out and will not put the time it takes into 1 person when they need to look after other's with hip replacement's or broken legs that have healed a spinal physio will also know how far to stretch the legs and what stretches to do without damage because of the lack of feeling they need to not over stretch.The fact that he sits in the chair all that time say's they dont know how to deal with things he needs to be careful about pressure sore's you need to make sure you dont sit in the same position all day and lift off the chair cushion at least every hour and as suggested lay down for abit to help relax the legs.

I really hope you get thinks sorted.


Silone74

[Avocado Baby]

Probably best not to start me on this topic cos it makes me reeeeeaaally angry but I've been paralyzed all my life and my physio was reduced to an hour fortnightly when I left primary school with a disabled resource to go to a mainstream school. Then, when I went to univerity it stopped completely...Like I didn't need it all of a sudden!

I know it's different in other countries as I spent a year in Germany, where it was prescribed to me as a matter of course without question.


I resorted to going private and paying in the end, although I'm getting an allowance for it now.

I hope everything works out for you.

[Angela250153]

Pink Ali, on Nov 30 2007, 10:16 PM, said:

'I know it's different in other countries as I spent a year in Germany, where it was prescribed to me as a matter of course without question.'

Pink Ali I am from Germany, but have lived in the UK for over 30 years. Everything with my emergency operation last year went great, but I wish I had been in Germany for my rehab.
There you would go to a spa town and get just about every treatment there is. They very much believe in alternative treatments as well.

Pink Ali, on Nov 30 2007, 10:16 PM, said:

'I resorted to going private and paying in the end, although I'm getting an allowance for it now.'

That just about the only alternative you have under 'good old NHS' and those who can't afford it are left to suffer.

[Izziwhizzi]

PsychoSimon, on Nov 29 2007, 02:57 PM, said:

Hi,
I'm sorry to hear of your problem.
I was in the midlands centre for spinal injuries a year ago after my accident. While I was on bed rest I had stretches done every day, and when I came out of bed I was in physio every day for the duration of my staythere. An hour a day, every day. It may have just been stretches, or it may have been doing weights on upper body and legs. I don't know as it was any help to getting anything back, but it stopped me getting tight etc and it prepared my arms for the great outdoors with the chair.
One thing I did do is to see an excersize therapist when I left hospital, because as soon as I left the physio stopped.
Is your friend on bed rest or up and about? They may not be giving him physio just yet because of a fresh injury/operation? Not that i'm sticking up for the hospital, he should at least be getting stretched every day...

Hi Psycho Simon

How did you find the welsh crowd? I still go there for my follow up, but I'm an old girl and was there before El Masri joined.

What is a exercise therapist? Are they any good or do you know of a good one locally?

I xx

[mblm07]

A big thank you to all you folks for responding, we really appreciate your input as no one seems capable/willing to answer your questions at the local hospital! We have made an appointment with the consultant and written a list of questions to ask, including timescales (don't think he will commit to any of them tho) - hopefully we will be a bit clearer on direction after this.

[silone74]

Hi again,i think if you do have everything you want to know written down and ask the consultant these questions they should help alot i think if you also express the feeling that gettin moved into a spinal unit i know that bed spaces will be an issue but this will be so benificial to gettin back on track and i think you will see such a difference in the approach to dealing with things,i think you may need to push for it like i say the bed space will be the thing that will crop up.


Hope you get sorted and hope all goes well with the consultant and you get all the answers you want to know.



Silone74

[Becca82]

Hi, as a former employee of the NHS CNRT (community neuro rehab team) based at sevenoaks, only a couple of miles away from you, and a full time carer/partner of a c4/5 complete tetra, who was also based at the good old Stoke M, please feel free to message me, and ill try and give you some info on the resources that are available to you/us locally! No promises mind, but i can possibly give you a few contacts to speak to depending exactly where you live in M.stone!
sorry cant write it all on here, but email or message me and go from there!
take it easy
bex

[Jsec64]

Hi
For me my physios have been exceptional. Unfortuantely, I did not go to a spinal unit which is a regret and have had major difficulties with DR's at times but in saying that, I also heard that Physio's aren't getting the credit they deserve and some have even questioned the role of physio. A joke !!
Unfortunately its down to budgets in most cases thats bearing in mind that your relation can undertake a full physio programme. Try asking what the normal practice might be and where can it be found in writing within their Trust's Nursing Care Agreement or similar Document. Make notes as to what is said date times etc. so you have a formal record. I would also suggest finding out about a local swimming group/ hydrotherapy etc.
I would also suggest that your MP is in a good position to assist you if you feel you need to escalate your concerns.
I'm in the next county to you Sussex. I wish you well and much success.
Kind Regards
John

[Avocado Baby]

I need to rant!! I've written on here about my problems with falling over and not being able to get back up again. Have tried a couple of contraptions, which may help a bit but aren't the perfect solution. Anyway...I asked my OT if I could get a referral back to the hospital where I had my fusion, based on the fact it's an orthopeadic centre with a specialist rehab centre. It seems they don't really want anything to do with me and don't seem overly keen to offer me any help!!

I mean, I know I was already paralysed and fused but I have had quite a significant reduction in movement and function so I really think I should get some more help from proffessionals to be able to cope with it!! Apparently not!!

Pissess me right off!!!

[Jsec64]

Pink Ali, on Dec 4 2007, 06:02 PM, said:

I need to rant!! I've written on here about my problems with falling over and not being able to get back up again. Have tried a couple of contraptions, which may help a bit but aren't the perfect solution. Anyway...I asked my OT if I could get a referral back to the hospital where I had my fusion, based on the fact it's an orthopeadic centre with a specialist rehab centre. It seems they don't really want anything to do with me and don't seem overly keen to offer me any help!!

I mean, I know I was already paralysed and fused but I have had quite a significant reduction in movement and function so I really think I should get some more help from proffessionals to be able to cope with it!! Apparently not!!

Pissess me right off!!!

Hi Pink
I think I am right in saying that all OT have to undertake Risk Assessments on each patient each year. Mine does 2 Risk Assessments each year. Can you ask your OT for a copy of your last one and then ask when she is going to schedule your next one at which time your changing condition should be addressed and answered.
You have a right to have this refferral-dont drop it. Have they written to you saying they can't or won't help, if so use your MP.
Kind Regards
John

[russ1]

Jsec64, on Dec 7 2007, 09:53 AM, said:

I think I am right in saying that all OT have to undertake Risk Assessments on each patient each year. Mine does 2 Risk Assessments each year. Can you ask your OT for a copy of your last one and then ask when she is going to schedule your next one at which time your changing condition should be addressed and answered.
You have a right to have this refferral-dont drop it. Have they written to you saying they can't or won't help, if so use your MP.
Kind Regards
John

How did you even get an OT outside of a hospital environment? - since leaving hospital over 4 years ago I had the community OT out to visit me twice at the very start to offer some help with accomodation adaptions - or realistically to put up a couple of handrails and then tell me I had too much savings to qualify for any other help and that was that.

As for physio I asked and because (and only because I'd asked) the community physio came out to see me and explained that they couldn't actually do any physio but could show me some exercises I could do on my own and that was that.

I get to see a consultant at the spinal unit once every 18 months or so and that's about it in terms of after care and this seem to be pretty standard amoung all my SCI friends although the incompletes who have some possibility of some limited recovery seem to fair a little better.

Same old thing with the NHS - need acute emergency care and the service is excellent - anything chronic or non urgent and you can whistle as you're either not getting it or you're going to wait a very long time.

[Avocado Baby]

Same old thing with the NHS - need acute emergency care and the service is excellent - anything chronic or non urgent and you can whistle as you're either not getting it or you're going to wait a very long time.
[/quote]


Couldn't have said it better myself!!

As for he OT situation. I made an almightly pain in the ass of myself. Multiple phone calls, MP, local hospital PALS. It's riddicuous that it should need those methods though.

As for the physio, most of them don't seem to want anything to do with you as they can't 'fix' you so I resorted to going private just for some pain relief.

[Jsec64]

russ1, on Dec 7 2007, 03:18 PM, said:

Jsec64, on Dec 7 2007, 09:53 AM, said:

I think I am right in saying that all OT have to undertake Risk Assessments on each patient each year. Mine does 2 Risk Assessments each year. Can you ask your OT for a copy of your last one and then ask when she is going to schedule your next one at which time your changing condition should be addressed and answered.
You have a right to have this refferral-dont drop it. Have they written to you saying they can't or won't help, if so use your MP.
Kind Regards
John

How did you even get an OT outside of a hospital environment? - since leaving hospital over 4 years ago I had the community OT out to visit me twice at the very start to offer some help with accomodation adaptions - or realistically to put up a couple of handrails and then tell me I had too much savings to qualify for any other help and that was that.

As for physio I asked and because (and only because I'd asked) the community physio came out to see me and explained that they couldn't actually do any physio but could show me some exercises I could do on my own and that was that.

I get to see a consultant at the spinal unit once every 18 months or so and that's about it in terms of after care and this seem to be pretty standard amoung all my SCI friends although the incompletes who have some possibility of some limited recovery seem to fair a little better.

Same old thing with the NHS - need acute emergency care and the service is excellent - anything chronic or non urgent and you can whistle as you're either not getting it or you're going to wait a very long time.

Hi Russ/Ali
I do have a very good OT and I know that as a department OT's generally are in great demand. I even found out that some boroughs have been using OT's from other parts of the country to help cover appointments because they are so behind.
Do you have a 'Independant Living Housing Team' within your County Council. This is the particular department that my OT belongs to. You might have to fight hard to get the apointment but don't give up! I certainly have had a written report about my condition after most visits by my OT.
I certainly don't believe that Community Physio is the answer. Ask your GP for a referral to a physio unit in hospital if you feel you can benefit from it. It is your right surely.
Hope you have some luck fella, let me know how you get on.
Regards
John

[Avocado Baby]

Yeah, I agree. Community physio don't/can't offer much.

My OT belongs to the Physical Disability Team so, try that one too.

[stabbed]

Hi
Im currently in rehab following an operation to remove Spinal Cord Tumour. It left me with paralysis in my left leg and numbness from the waist down.

The acute care I received was excellent..the initial stages of my rehab was very frustrating.

I was transferred from the Walton Centre in liverpool to a local hospital and placed on a general ward..I found it very depressing to be in a wd that consisted of very poorly elderly patients..being very active and (fairly) young; im a 38 year old male. I felt i had been forgotten.

After chasing and chasing my consulant who could not give me a date for rehab (every week was told 2 to 3 weeks..others have priority etc) I wrote a letter of complaint.

This letter was sent to everyman and his dog! Chief Ex of Hospital and Primary Care Trust, Consulants, GP and my MP...I quoted the National Service Framework (NSF) for long term conditions...that i should have access to rehab and that rehab is essential for quality of life.

My MP (Christine Russell) was fantastic..responed the next day and the tempo of the hospitial lifted tenfold.

I was transferred to the Midlands Centre and the rehab and holistic care has been fantastic. I have physio, OT and gym daily and swimming a number of times a week.

I dont know if this approach will work for your brother but if you or he wants to chat..it sounds like we have very similar conditions..i would be happy to help

Good luck to you and your brother

Mike

[Mr.Rochester]

Hullo I too have a tumour of the spinal cord. Mines a low grade astrocytoma, If you want to give your brother my email i would be more than happy to have a chat with him.

Andie

arochester@hotmail.co.uk