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Crohn's Disease Forum » General IBD Discussion » Waiting impatiently. NHS is so slow.


 
11-22-2012, 05:52 PM   #1
Harreh
 
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Waiting impatiently. NHS is so slow.

Waiting to be admitted for IV steroids. In the mean time I get the full force of my Crohn's every day. Been over week since the date on the letter from doc to bed manager. Getting impatient now.

First went to my GP in January, then the endoscopy that officially diagnosed me with Crohn's was in September. What took so long?

Just wanted to moan about something. Just want to get into remission.
11-22-2012, 06:23 PM   #2
SarahBear
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It does tend to be an annoyingly slow process! I'm sorry you're feeling badly. Do you have any idea how long of a wait it might be? Can you call and check?
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11-22-2012, 06:27 PM   #3
robbo87
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Hope they get you sorted soon! they can be slow at times and frustrating but we are lucky to have it all for free I suppose. Which hospital are you treated at?
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11-22-2012, 11:25 PM   #4
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My sympathies. I first went to my GP about my issues mid July, but I didn't get to have the relevant tests done on me until last week.

And the Tories want to slash their budget?
11-23-2012, 03:02 AM   #5
hainman
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I waited almost a year for DX and then most things went well.
I have had to wait the odd while for a scan or something but as Robbo87 has said.we are lucky its free....if i had to pay i would be rooked,all my meds dont come cheap,had 3 colonoscopys and an endoscopy this year alone so im looking on the bright side....
I hope you dont have to wait to much longer...
11-23-2012, 04:25 AM   #6
StaceyQ
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Phone the doctor and say nothign has happened yet, i do if i really need something then they get fed up and will bring you in, they cant treat you like this, its not as if it will just go away and calm down by itself.

Call them today and get it sorted.
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11-23-2012, 04:25 AM   #7
Laura Dawn
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Its good to vent and this is the perfect place, since most of us have been there.

Do they have you on self administered steroids while you wait for the IV? I've been on my share of steroid pills, never the IV. IV's get into the system so much faster. How does is work in the UK? Can you call and ask when they forsee this being approved? I'm curious how the system works. Hopefully you are on something to help in the meantime. Please keep us informed.
11-23-2012, 05:11 AM   #8
StaceyQ
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on the NHS it is all free, but you do sometimes have to wait a while. There is no approving at such just requests to be done.

You do have to badger them to get things done or they do it in there own stride x
11-23-2012, 05:11 AM   #9
StaceyQ
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on the NHS it is all free, but you do sometimes have to wait a while. There is no approving at such just requests to be done.

You do have to badger them to get things done or they do it in there own stride x

11-23-2012, 05:59 AM   #10
Kip1
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Hi Harreh

Are you on any medication at the moment? Do you have a GI you can contact or a Crohn's & Colitis nurse. I find the nurses help invaluable as they seem to get things done quicker.

I would have thought they could have given you steroids orally until they can get you in to hospital.
Perhaps you could complain to the patient liason service as they can sometimes get things moving.
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11-23-2012, 06:20 AM   #11
Harreh
 
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Yeah I've got oral steroids for now. Helps a bit but the docs want to try IV's.

To be honest I'm glad my diagnosis was successful.

I've been spending this time figuring out what foods influence my Crohn's and eating way more healthily. So far I've found that mince is a bad choice and fruit is a great choice.
11-23-2012, 06:25 AM   #12
Harreh
 
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Called, secretary puts me to the bed manager. Answer phone.
11-23-2012, 06:33 AM   #13
Kip1
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Hi Harreh
Its great you are figuring out which food suits you. I am sorry about the answer phone for the bed manager. I always find its better to go through to the Crohns & Colitis nurses.
If you feel you really cannot cope at all then maybe A&E would be a better option for you. It may speed things up.
Let us know how you get on.
11-23-2012, 10:40 AM   #14
Harreh
 
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Thanks, should be fine really. Just getting fed up of being woken up during the night to go toilet. Seriously messes with my dreams... very bizarre to wake up in a bathroom feeling terrible due to diarrhea.
11-23-2012, 03:42 PM   #15
highlandsrock
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Getting treatment/consultations on the NHS doesn't have to take a long time but you do need to take control. I've taken to emailing my consultants when something needs actioning or co-ordinating. In the last 11 days I've had 5 appointments. From those I've ended up with needing a liver biopsy and another colonoscopy and they have both been booked before Christmas.
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11-23-2012, 07:02 PM   #16
StarGirrrrl
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Yes don't be afraid to chase people time and time again and don't be shy to contact the complaints department if needed.
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11-24-2012, 07:25 PM   #17
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Thanks, should be fine really. Just getting fed up of being woken up during the night to go toilet. Seriously messes with my dreams... very bizarre to wake up in a bathroom feeling terrible due to diarrhea.
Poor you! It can move very slow in hospitals i know how you feel. Which hospital do you go to? Im in Manchester to & i go to Wythenshawe hospital. They are great in some areas but very slow in others. Try to get your GI doc to chase these steroids for you, you have enough to deal with right now bless you
11-24-2012, 08:10 PM   #18
Laura Dawn
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Do you feel comfortable that your GI is doing everything in his or her power to help you get the steroids as fast a possible? I had a GI that couldn't get anything approved for lack of trying . I changed GI's and he got more done in a month than the first one did in four. I had my first night of getting up mulitie tones and it was awful. I've been pretty stable for a bit over a week. It's life altering to be up so much. Hopefully you have a healthcare advocate that is helping you . Hugs
11-25-2012, 08:57 AM   #19
highlandsrock
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When I was waiting for Infliximab to be approved by the local Primary Care Trust I got fed up with how long it was taking so rang the hospital's Chief Pharmacist. I apologised for contacting him directly, explained the situation and asked if he could help me. He approved the drug within ten minutes and a few days later I had my first infusion. It really is worth making a fuss if you don't think things are moving fast enough.
11-25-2012, 11:07 AM   #20
Laura Dawn
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Nice! That's how I got after months and months. It sucks having to be that person but sometimes that person is the only only one who gets help unfortunately.
11-26-2012, 08:17 AM   #21
Harreh
 
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Just phoned up and I got an ambiguous "hmm, yes. Well there's nothing available I'm sorry." along with a "we'll call you back".
11-26-2012, 08:37 AM   #22
Kip1
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I am sorry you are having this trouble Harreh. Maybe A&E is a better option for you.
11-26-2012, 08:50 AM   #23
Harreh
 
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Poor you! It can move very slow in hospitals i know how you feel. Which hospital do you go to? Im in Manchester to & i go to Wythenshawe hospital. They are great in some areas but very slow in others. Try to get your GI doc to chase these steroids for you, you have enough to deal with right now bless you
Stepping Hill in Stockport. The Christie Hospital in Didsbury is also nearby but never used it.
12-28-2012, 08:19 AM   #24
Harreh
 
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Going in for the IV steroids now.

Yaaaaay.
12-28-2012, 03:16 PM   #25
Laura Dawn
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Good to hear. Hope it helps!
12-30-2012, 03:52 PM   #26
Harreh
 
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I think it does. Don't know, feel really low on energy. Right now I feel malnourished rather than Crohn's. Been weighed at 40kg.. that was a scary moment. Pre-Crohn's I was 60kg.

Still in the ward, not sure when I'll be out though.
12-30-2012, 04:30 PM   #27
Laura Dawn
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Hey there, have they said how long they will keep you there on the IV?
Have they checked your B12 levels? I'm sending positive energy your way! Hang in there!
12-30-2012, 05:30 PM   #28
Harreh
 
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When I came in they said 'till Monday but I bet they keep me longer.

They're not checking my B12 levels, I don't think. Did my bloods when I came in and regularly do blood pressure.

Thanks Laura!

I know it may seem a bit rubbish to be stuck in a hospital... especially on the holidays! But this is progress for my treatment.
12-30-2012, 07:14 PM   #29
Laura Dawn
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Nope, doesn't seem rubbish at all! In fact , sounds like you have a really positive attitude. It will be a great Xmas gift if they can help you feel better!
Keep us posted! Do you have friends and family there to support you as well?
01-01-2013, 08:37 AM   #30
Harreh
 
Join Date: Nov 2012
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My parents come every day, bring me various things from home as I remember what items I could do with. Juice, too.

And yes! Positive attitude is essential. Really no need to make this worse for yourself.

Lost a fair amount of blood yesterday. What a nightmare. Low on energy today but eating and drinking well to keep up.
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