After 11 months wait for my routine rheumatology appointment ( two appointments, 1st Feb and 7th June were cancelled) I find, from my Biologics nurse, that I have a new consultant. I suppose par for the course that it might be too much to expect to be informed of this change by letter; the very least I consider to be both good management and polite.

Monday 28th June 11.45am appointment. I arrive. I book in. So far so good, but ... what is that thin looking file that purports to be my notes? Why am I on a temporary file?
“Ah well Mrs Wilson we don’t seem to be able to locate your notes at the present time.”
”That would be a kind way of saying they’re lost then?”
“Not exactly lost, no, just unavailable and as soon as they are located they will be amalgamated.”
Oh good not lost then, phew! Clearly the clerk things I’m a brainless idiot!! Of course the notes are lost, missing in action, nowhere to be seen, not where they are supposed to be!

Calm down, don’t get upset, even though it’s bl**dy annoying after waiting 11 months. I sit. I wait. I get stiff. I get up. I walk. I sit down. I talk and then ... repeat several times over. It’s now 12.15pm and people are complaining. There are at least three in front of me.
“Yes Mrs Wilson there is a bit of a wait, doctor is running a little behind schedule.” Running? Running? Oh come on they must be having me on! The fastest I’ve seen anyone here move was when the nurses lunch arrived and they all bu**ered off into the treatment room to stuff their faces.

I sit. I wait. I get stiff. I get up. I walk. I sit down. I talk. I moan. I have an appointment at 1.15pm 9 miles away. It’s now 12.45pm. I phone and explain I will be late; I hate being late. I interrupt nurses lunch. I can’t wait. Things to do. Places to go. People to see.
“Can I please have an appointment for next week, I can’t wait any longer and I have already waited over an hour?”
“No sorry, if you don’t see the doctor today the next appointment may be 5 or 6 months .”

I sit. I wait. I get stiff. I get up. I walk. I sit down. I don’t talk there’s no-one left. Just me then. Good news ... I’m next! Tick tock tick tock tick tock. Its 1.05pm.
“Would you like to come in Mrs Wilson?” Hmm .... would I?

In I go. I try to be pleasant but clearly this is not going to be an easy appointment and it hasn’t got off to a good start. No apology. No notes. A two minute potted history is required. 22 years squeezed into a nut shell, medications, operations, x-rays, scans, investigations, problems. Just as well my written notes are fairly good because we’d have been up a creek without a paddle without them.

Upshot is neutropenia not good, there’s a surprise! Caused by 15mgs of methotrexate. Really? You don’t say! Apparently meds will need to be changed and she seems to be under some impression that I can’t have Enbrel without methotrexate, because it’s a combination therapy so I will have to go back on a DMARD. I have had them all, except one whose name escaped me, and failed on them. My DAS is now good and joints not too bad so I probably don’t qualify for anti tnfs. What? So let me get this right once the biologic does its job and gets the disease under control you no longer qualify for anti-tnfs because your DAS has come down and you no longer have the required number of tender or swollen joints. Well that’s good news then because if we carry on like this eventually I will be cured!!! So I transfer to a DMARD. Then what happens when joints become inflamed, DAS goes up will I be considered for a biologic? I’ve already had two remember, so probably not. Clearly she hadn’t thought this through and is quite possibly still pondering on it!

Not the slightest idea where I go from here so an appointment well worth waiting for. Oh yes she has managed to book me for an ultrasound of my bladder and a cystoscopy to work out why I keep getting infections. Oh and yes I do have the Rheumatology Nurse Practitioner’s phone number should I need to get in touch. Why on earth would I want to do that?! See you in six months then! I think not ... this is one consultant who will not be having the pleasure of my company any time soon. Next stop my GP for advice ... thank goodness for understanding GPs.

Haematologist says a bone marrow transplant will offer only temporary relief as the systemic nature of auto-immune disease, RA in particular, means that it is unlikely that my system will support a transplant long term. Back to the drawing board and frequent blood tests.

I’m going for a synovectomy on my knee next Thursday ... just wait ‘til you read that scenario!!!

Lyn x

Dear Lyn

I am totally speechless to be honest, I really am.

I think if I had had to endure such " treatment " given your condition at the present time I would have no faith in them at all. You know I m not very well up on all this but surely if you complain to the right authority you need to be seen by a hospital that respects its patient and looks after you properly. No doubt that may well prove difficult for whatever reasons but the level of care you have been shown is totally unacceptable and this has to be brought to the attention of the powers above. I am so angry I hope this all makes sense !

With love Julia x

I can't believe this Lyn, has she taken you off the Enbrel? Like Jo says, her and others are taking Enbrel without mtx.
You really need to do something about this. Is there another consultant at the hospital? If so, I think if you ring PALS and complain ,and explain that you need to see the other consultant quickly so that you can stay on the enbrel.
Surely this doesn't mean that as soon as the anti-tnfs get our RA under control we know longer qualify for them!
It scares me because I am having to see a new consultant now, that's if I ever get an appointment.
Hope you can sort this out soon.

Love, Doreen xx

Hello Lyn thats disgraceful lack of care,
and no way should youve have ben on the standard 6 month wait which was the extended due to them cancelling,def go pals and ask them help sort this mess out.
also gp yet agin picking up peices from shoddy care.
feel so angry you been treated like this.
genlte hugs
melly

Dear Lyn,
So sorry you have had such poor treatment.
Hope your gp supports well next week, thank goodness for great GP's.
Need to raise concerns, will be thinking of you, let us know how you go along xx
With love from Liz xx

Hi Lynn

Well I really couldnt believe all this, you must be so frustrated. On another note re the bladder problem you have. I also have some sort of problem and will have to have the cystoscopy. I had an ultrasound scan last year which did not detect anything, and the consultant sent a letter to the doctor which indicated that he thought there is a link between methotrexate and (I think) interstitial cystitis which as you most probably know is inflammation of the bladder lining. Mine are little flare ups that just last for a couple of hours and then go away. I did do a bit of research myself on the internet and it said that of some research that had been done 17% of the people in the study had RA and that interstitial cystitis in an immune system problem.

Regards

Val

Hi Lyn,

That is absolutely shocking treatment. I know you will not take this lying down, but again, it means a poorly person like yourself has to take up cudgels in spite of your problems, to get the treatment you deserve.

I, too, had a rheumy appointment last week, and my rheumy too was "running late," but she apologised profusely and with courtesy.

Losing your notes is completely unacceptable - how can this happen? Someone is not doing their job with due care and attention.

On the issue of DAS and the RA being under control - that`s the whole point of the anti-TNF`s, isn`t it? Surely if we have to stop them because the RA has improved we will then go back to square one, and the nightmare of rampant RA. I take humira and only humira, because of problems with MTX, so it doesn`t have to be used in combination, though I know the medics prefer it. I particularly discussed this with my own rheumy, who said that if the humira is doing a good job on its own there was no need at this stage to add anything.

I`m sorry and angry that you were treated like this, and hope your GP will take up the baton.

Take care,

Kathleen x

Val (sorry to take over on your pots Lyn) its strange you mention the internal cystitis. I never have cystitis or thrush at all and over the last few days have had a feeling of needing to go, but when I get there nothing happens except some pain. Didnt even think of the mtx or any of the drugs, but very interesting to know, thank you.

Hi Lyn,

I'm absolutely gob-smacked at your story!! I remember I had a similar experience many years ago in the early days of my diagnosis and it's certainly not condusive to good health!! I now have a fantastic team and it makes all the difference.

Write the letters and definitely see your GP. After 22 years of RA, you deserve better than this!

Joanna