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Date: 01.07.2013
From: Emm

Subject: Cancelled...my long awaited,much needed appointment

Hi all couldn't believe it today when the phone rang at 10.30 am. It was hospital cancelling my Rheumatology appointment. My appointment was for 3.10 pm today.
As I have said before I am needing a Knee injection and hopefully an ankle one. Can hardly walk at all.
The lady said doctor was ill and cancelled the clinic, I Know they can get ill too, but I have waited a long time for this one.
Then I rang the specialist nurse to be greeted by a taped message saying this service has been suspended and do not leave a message as it will not be answered.
What is all that about!
Sometimes I don't know where to turn for help.
Hope all are not too bad. Emm x
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Date: 01.07.2013
From: Bsk

Subject: Re: Cancelled...my long awaited,much needed appointment

Emm phone your hospital and ask to be put through to the on call rheumatologist. They will ask for your number and bleep him so he will ring you. You don't have to explain why to the operator and you can do it at any time of the day.
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Date: 01.07.2013
From: Emm

Subject: Re: Cancelled...my long awaited,much needed appointment

Hi bsk, I have never heard of being able to do that, maybe it is not available in our area.
It is too late tonight to do anything.
The lady that rang just said she would tell his secretary I was in need, but usually I get no response.
She said they would have to try to re- arrange his clinic.
But who knows when that will be.
You may remember that my GP would not give me a jab on two occasions.
Why do they seem to think we can suffer indefineitly.
Regards!
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Date: 01.07.2013
From: Eve

Subject: Re: Cancelled...my long awaited,much needed appointment

Aww that's rubbish :( I don't have that option either though we have a nurse helpline though it can be a bit hit and miss if you get any response.

I've found sometimes you have to push for things, I had injections in both my shoulders pushed back, think they forgot and were too busy but don't think they realise what the extra month or so's wait can mean for us. I felt like I was being bounced again the next appointment so was determined not to let myself be again and got them done. At least I was there though but am now in a similar situation with other issues, so frustrating. Could you get your GP to chase things up for you?
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Date: 01.07.2013
From: Emm

Subject: Re: Cancelled...my long awaited,much needed appointment

Hi Eve, I get no satisfaction from my GP. she always fobs me off. I wonder if things have got worse, since they have taken charge of their own finances. I have noticed lot's of lapses the last few weeks at my GP's and am thinking of changing!
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Date: 01.07.2013
From: bsk

Subject: Re: Cancelled...my long awaited,much needed appointment

Emm, I urge you to phone the hospital tomorrow and either try and talk to your rheumy or one of his team. Phoning the switchboard and asking to speak on-call rheumy is what anyone who wants to speak to them does. I've been told to and have their bleep number (somewhere under a pile of paper!)

The other option is to pitch up at A&E to see if you can get a steroid jab there. They will call the on-call rheumy so you might as well phone them yourself and arrange a time convenient for you rather than sit and wait.

Please don't suffer in silence. They won't know how bad you are unless you tell them.
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Date: 02.07.2013
From: rhona

Subject: Re: Cancelled...my long awaited,much needed appointment

Hi Emm, That is awful. Under the circumstances I would do what bsk has suggested. x
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Date: 02.07.2013
From: Emm

Subject: Re: Cancelled...my long awaited,much needed appointment

Hi bsk, I phoned the secretary today, amazing she was there, off tommorrow! She said unfortunately we do not have a flare clinic.
She does not know if the specialist nurse can inject, but will ask her, the rheumatolagit doctor hopes to be back at the end of the week but she does not know if he will squash me in as an extra, as she has to ask him and she can't because he is not there!!!
So I have to hang around and hope I get a phone call.
The rheum' doctor and the specialist nurse are not based at my local hospital too, he visits once a week.
I have not seen him since last November, it was my 6monthly yesterday, which was actually 8 months as they are so busy.
I asked where do we turn in the midst of flare- ups, she did not know!
So I really don't know what one is supposed to do.
Frustrated!
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Date: 02.07.2013
From: Bsk

Subject: Re: Cancelled...my long awaited,much needed appointment

That's awful Emm. Your only other option is to pitch up at A&E, which is what I would do!
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Date: 02.07.2013
From: Eve

Subject: Re: Cancelled...my long awaited,much needed appointment

How frustrating :( Are you in a small hospital where doctors come from a larger hospital? If so, could you press to see if they could see you at the larger hospital to get an injection done at one of their clinics if it would be possible for you to get there ok?
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Date: 02.07.2013
From: Emm

Subject: Re: Cancelled...my long awaited,much needed appointment

Yes, a smaller hospital, but I did ask and said I would go to the main one, but the secretary said it didn't make any difference. You take pot luck and hope to catch a secretary or specialist nurse that is not on holiday or a day off!
There is no facility to see people with problems that crop up!
I think that policy should change, it is too difficult to get in to see a specialist quickly and it seems no- one can help .
Are they not trained, one man cannot do everything.
It needs to change.
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Date: 02.07.2013
From: Eve

Subject: Re: Cancelled...my long awaited,much needed appointment

It does. Could someone like NRAS help back you up on it?
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Date: 03.07.2013
From: Emm

Subject: Re: Cancelled...my long awaited,much needed appointment

Hi all, Secretary rang this morning with an appointment for 11 th July, still over a week away, but hey.....
Have to go to the bigger hospital for it.
I am going to ask if I can be considered for one of the bio drugs but half a dose because of infections, I got this idea from one of you..was it Rhona?
My RA is way out of control and has been for 18 months at least.
I tell him on my 6 monthly visits, but never get to try anything else.
Thanks for listening and all the support.
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Date: 03.07.2013
From: Eve

Subject: Re: Cancelled...my long awaited,much needed appointment

Aww glad you got one, hoping the week will go quick for you.

I'm sure I saw somewhere that I think Enbrel can be better with people with lots of infections as it's only in your system a couple of days whereas Humira can be a few weeks? Can't remember where to double-check though. It was interesting reading for me as I tend to get a lot of infections and my consultant has mentioned the biological drugs to me, don't see them now til December though.

I have tried to find decent supports for my knees but the fabric supports and tubigrips just keep slipping or rolling up when I put them on unless I'm sat still. I do wonder sometimes, you'd think they'd realise that if your knees are screwed it's pretty fundamental to be able to walk and get about, work etc... I think I'm going to need to go from one walking stick to 2 soon.

Glad you finally sorted it :)
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Date: 08.07.2013
From: Emm

Subject: Re: Cancelled...my long awaited,much needed appointment

Thanks for your support, Eve, I will report back after my appt on Thursday.
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Date: 08.07.2013
From: bsk

Subject: Re: Cancelled...my long awaited,much needed appointment

It was me! I take a half dose of Enbrel but also pred. It's a compromise because I've respiratory problems.

They've just changed my clinic from early August to late September. very annoying!
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Date: 08.07.2013
From: Emm

Subject: Re: Cancelled...my long awaited,much needed appointment

Bsk, sorry I got the wrong person. I too have bronchiectasis, as we discussed in an earlier post. Yes I remembered about the half dose and so I am going to ask if I can be considered for a trial of that.
You too have delayed appointment, it is annoying. I think they need to train more Rheum' staff, nationwide. I also like the idea of the Flare Clinics I read about on here, it takes me weeks to be seen in a flare up situation.
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Date: 08.07.2013
From: bsk

Subject: Re: Cancelled...my long awaited,much needed appointment

My last consultant, who has just retired, never cancelled his clinics and i only ever saw him. He was old school. Best of luck with your appt.
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Date: 11.07.2013
From: EMM

Subject: Re: Cancelled...my long awaited,much needed appointment

Hi Ladies, I got a knee AND ankle injection this afternoon, on the same leg.
I came home and had tea and then laid on the bed for 2 hours, probably due to the heat too!
I can feel definate improvement already.
I am soooooo relieved. Dr said I am 'bone on bone' and if injections work I can have them indefineatley, twice a year, which seems needed for me.
When injections don't work for me then replacement surgery is done. Fusion on the ankle.
I cannot have bio's as he thinks my pain is due more to degeneration than inflammation.
So there you have it, the conclusion to my trial and tribulations.
I only wish it didn't take so long to be seen.
My next appointment is January 2014!
Regards from a happier patient. X
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Date: 11.07.2013
From: marlene

Subject: Re: Cancelled...my long awaited,much needed appointment

Hi Emm, I am so glad you have had a positive result. Really good that you can feel improvement already. Take care and lets hope this helps for a good while. xx
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Date: 11.07.2013
From: Emm

Subject: Re: Cancelled...my long awaited,much needed appointment

Thanks Marlene, I do hope so, It is so good to feel a 'normal' leg!!!
I hope all is well for you. X
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Date: 11.07.2013
From: bsk

Subject: Re: Cancelled...my long awaited,much needed appointment

I'm pleased for you Emm. I hope you are pain free soon.
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Date: 12.07.2013
From: rhona

Subject: Re: Cancelled...my long awaited,much needed appointment

Isn't it great when the pain eases Emm. Try and rest it as much as possible over the next 48 hours as it can make the injections more effective (that's what I was told). xx
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Date: 12.07.2013
From: Emm

Subject: Re: Cancelled...my long awaited,much needed appointment

Thankyou all for your support. It really helps and means a lot.
You are right about pain, Rhona. You forget what it is like to not have any.
I still have of course, but that leg and ankle pain was on another level and am so pleased that has gone.
I wish all the best to everyone. X
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