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Hospital Nightmare (Take 2)

Earlier this year I was admitted to hospital after suffering a relapse, I had been confined to bed at home, in considerable pain of a level not experienced before. In hospital they stabilised me with pain killers and managed to get me home after a week. Sadly I ended up back in hospital within 10 days and thats when my nightmare began, I was left in no doubt that they were not pleased with the fact I had come back to hospital again (it’s bad for the ratings I was told by a nurse).

After a week they finally gave me a CT Scan as I rejected the MRI scan because i am claustrophobic, they had promised to give me heavy sedation for the MRI scan which turned out to be half a diazepam which had no effect at all. The CT scan showed disc degeneration in my lower back which was probably the cause of the pain and the weakness I was experiencing.

I was earlier told by one senior consultant that the weakenss in my legs was imagined. Another senior consultant also questioned my level of weakness and told me to get out of bed saying I won’t get better lying there, and also if I was looking to blame someone for my medical problems I should blame my parents as they had passed MS onto me. On finding the disc problem they seemed very keen to get me to have surgery (I assume that’s good for the ratings) although any surgery would be carried out at another Hospital.

My treatment was shambolic, they tested my blood sugar as I am also diabetic sometimes after meals and told me I was not managing my diabetes properly, They also under dosed my baclofen because I am on an odd doseage (1 tablet 5 times a day) as they only do 4 drug rounds per day. Someone then reduced the doseage to 4 on my prescription whilst in hospital. It was no wonder I was finding it hard to get out of bed let alone walk.

A Neuro Physio had earlier examined me and agreed with me that there was something wrong and even suggested before the CT Scan that it was probably a disc problem. Maybe these 2 consultants felt they had been undermined by this Physio. I was allowed home after 2 weeks and even though my condition is considerably worse than it was. I was glad to get out of hospital.

I was due to have disc surgery at in October but it was cancelled the day before surgery was due as they said my blood sugar level was outside the range required for surgery. So I am in limbo as regards surgery although I have an appointment to see the surgeon in the new year. Fortunatly my condition has improved slightly and I can at least do some light housework and a small shop once or twice a week.

The whole experience has left me feeling depressed and I have had a course of councilling which has helped a little. It does not auger well for the future as one of the consultants will be the one ATOS contact for any medical information they might require.

I have diabetes too - but not the terrible MS problems you are having.

Have you been back to your diabetes specialist? I see the nurse practitioner at my GP’s surgery for my diabetes care. She has said that she can help me deal with any blood glucose level issues brought up by my MS treatment. Which is no treatment in my case!

We were talking about blood glucose management should I have had steroid infusions for a relapse. I have SPMS so just am ‘bad’ all the time, but no definable relapses so no MS medication for me. She was talking about temporarily managing my glucose levels insulin for a short period of time in place of the tablets I usually take. I’d say diet and exercise too, but the exercise bit ain’t possible these days lol My lovely nurse said I could go back and talk to her just if I need extra support dealing with the joys of living with MS (plus diabetes plus epilepsy).

Good Luck with your treatment for your disc. I can’t begin to imagine what disc problems do to you!

take care,

Ellen

Hello Nullgrad. I’m really sorry to read you’ve had such a negative experience…this really annoys me.

Get in touch with P.A.L.S. at your hospital, they are there to act as your advocate. You do not have to put up with this kind of teatment. You don’t even have to go to this hospital…having said that I don’t know how mobile you are or what other hospitals are in your area. Just want to get across to you that you shoudn’t put up with this crap.

Sorry!! I’m a qualified nurse…I don’t practice anymore because of illness. I just get so angry when I read stories like yours. I’ve had to use Pals myself and they were excellent…sorted my problem out quickly.

All the best to you.

Take care, Noreen

Same comment as Noreen - PALS

I would also suggest: local MP, local press/radio, and make sure you copy whoever prescribed your Baclofen.

The same sort of thing happened to my wife. In for a “relatively” minor op, and her Parkinsons medication did not fit the hospital drug rounds. She told her Neurology nurse. The nurse said that they were aware of a problem with that hospital and that medication - and that a program was being started to re-educate the ward staff.

If you don’t complain where it matters, then nothing gets done about it.

Geoff

When i was admitted due to constant body spasm i have progressive ms…they refused to admit i had ms…i got shouted at and the nurse even took my wheelchair away shouting at me i could walk…they woukdnt let me go to the toilet as said i could walk…i went to discharge myself told i couldnt as psyciatrist wanted to see me as i was clearly mentally ill…i was told i could not leave…this was on the friday…my family went mad telling them i had ms yet dr would not back down…i was left in my own muck with constant body spasms…i couldnr even get my meds…on the monday the psyciatrist came who was vile he called my gp who was furious telling him i had progressive ms…they then said i could go…no apology nothing… This is george elliot hospital nuneaton…i would rather die than go back there

Anonymous

I would like to post this on the hospital facebook page or send a copy to the Chief Executive. If this is factually correct then it is totally unaceptable and all those involved should be sacked.

Cheers

Moira

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Please take Moira up on her offer anon…private message her. Don’t let these people get away with it.

They bring shame to the majority NHS staff who work hard in caring for patients.

And please believe the majority of us really do!! Noreen

Believe me its true…my notes have dissapeared about my hospital admittance all.gone…there is a letter in my notes now from a neuro i apparently saw at the hospital saying i dont have ms i have never seen a neuro at this hospital ever…my neuro was at queen elizabeth birmingham…at george elliot i have never seen a neuro yet there is a letter in there saying i have…what do i do?..when i had to go to accident and emergency theres this letter on file saying no ms…the dr in a and e printed it off for me so now it looks like i am mentally ill…what the hell do i do to get this letter out of my file…my gp knows i have ms thankfully…what do i do?..the hospital say ive seen neuro there only once but he said i dont have ms bit ive never seen one there…its scary tbh has made me want to move…

The letter is by a registrar who no longer works there…so now this letter is on my file…ive been with this hospital only a couple years as moved…my ms neuro was under bham…i no longer see neuro as my gp so good so under gp care…i get ill i get taken to that hospital they see on my notes no ms…what the hell do i do…i could cry and keeps me awake

You could star by using the advice given to Nullgrad and contact P.A.L.S. at your hospital

Speak on the phone to them if you like…thats what I did but I followed it up with an email as I wanted something in writing. Why isn’t your gp helping you sort this out?

See what Pals do for you…then come back to me.

Good luck, Noreen

PS: I promise you’ll start feeling better when this crap is sorted.

Can you contact your old neuro at Birmingham and ask for a your records from there which show that you have MS? Then you would have written proof of your diagnosis with dates etc which you can show to PALS

good luck with sorting this out, your treatment was awful

Chris

I have been troubled for much of the year about what to do, I have a very good Community Medic and he gave me the PALS contact number, a lot of NHS people have told me how disgusted they are and some guessed at least one of the doctors identity as he is renowned for his aggressive attitude towards people with MS, my own take on it is he doesn’t rate MS very highly as a medical condition.

I am seeing the MS nurse in December and no doubt the topic will come up again. I haven’t mentioned the hospital; or the doctors but I can assure you my account is very accurate and other people I know who have MS have had similar treatment .One of the doctors is head of Neurology at at least 2 of the Hospitals in the area.

My medical conditon seems to devide doctors the younger doctors seem to take on board what I am telling them whilst the seniors tend to dispute things. I used the phrase they dispute symptoms of medical conditions that they diagnosed me with. The thought of having to have disc surgery and spending anymore time in hospital fills me with dread.

Contact PALS Nullgrad, you will feel less troubled when you do. It disgust me that your have the stress of this on top of all your other worries. These so called health care people should be put back in their boxes

Make that phone call or write that email…PLEASE!!

PS: I would also advise to get a second opinion regarding surgery. I am NOT saying you don’t need it, I’m just saying its a big operation so make sure your happpy with the surgeon…its your body…do the research.

Noreen

1 Like

Mad - how difficult is it to give medication 5 times a day. IF you do have to go to hospital again - I hope not - I would hide some so you can take the fifth dose yourself. IDIOTS Hugs Min xx

Sorry it’s taken so long to reply - I found out earlier this year that the Neurologist was given the option to retire early or was going to get sacked, he chose the retirement…There were several changes made within the department as a result and from reports I have had that things are a lot better.

I decided not to go for surgery and apart from having a UTI at the start of the year have had a reasonable good 2 years. The neuro has since left the hospital.

Sorry it’s taken so long to reply.