I last saw my consultant in early July and was told she would see me in 6 months -ie. now. My hospital has a system where you are sent an appointment 6weeks before it is due - to reduce the number of missed appointments. When nothing arrived by mid-December I rang and was told that my Doctor had been ill and her clinics were running 6 weeks behind. Well, she can't help being ill so I left it until today. Now I am told she is 3 months behind!
I know I am doing relatively Ok but I worry because I knowthat I am worse than I was when she last saw me. I went on hydrox in Oct 09 and mtx was added in Feb 10. The dose was supposed to increase from 7.5 to 20mg over a 3 month period. However, as I have said on other threads, every time I go up to 10mg my white blood count drops and back I go to 7.5mg. My hands are worrying me. The fingers are tender and beginning to twist and swell. If I wait patiently for another 3 months will I be left with perminent damage? If I was on a different or additional drug might it slow up joint damage? My aches and pains are copeable but are definitely worse.

So, do I possess my soul in patience -my normal mode of action-or do I start nagging?

Even as I write this I feel that I'm making a fuss but it is worrying me.

Advice would be welcome
Sue

Hi Sue,

You are not just making a fuss, at this rate it will be at least 12 months before you are seen.
Do you have a helpline number for the rheumy nurse? Ring and explain that you were told you would be seen in 6 months but now it's well over that and things are getting worse for you.. If you don't have a helpline, ring the consultants secretary.
Hope you can get an appointment soon.

Doreen xx

Hi Sue

I ended up waiting 15 months (due to continued put backs and my 'stupid' tolerance) for a 6 month follow up appointment and suffered greatly in that time. An ESR of over 100 for 6 months followed by neutropenia for 3 months. At very least express your concern to a rheumatology nurse who can perhaps then speak to the consultant on your behalf. Your consultant will not know that you have concerns if you don't voice them through the appropriate channels ... if she doesn't hear otherwise she will rightly assume you are continuing to be well on your treatment. Alternatively drop her a letter explaining how you feel; perhaps x-rays could be ordered for your hands to check for damage. If they are starting to twist they need looking at as you could be starting with ulnar deviation. Please don't delay, your hands/wrists contain many small joints that can be very easily damaged by RA.

It isn't a case of nagging, it's a matter of putting across your needs. Hope you are able to get something sorted out quickly. Do let us know how you get on. Good luck!

Lyn x

Apparently the surge in RA cases, through greater awareness and earlier diagnosis, has put a lot of additional stresses on the already stretched Rheumatology services. The need to see newly referred cases quickly has meant those with longer standing disease are having to wait longer for follow up to allow these new cases to be seen. One of the problems with RA is that unlike orthopaedics who 'fix you' and 'despatch you', once on the rheumatologist's list that's where you stay, you don't get discharged! We got an additional Rheumatology consultant, making three, last year which gave a temporary reprieve but already those extra available appointments are being booked up.

There is going to have to be a complete revision of these services to cope with the extra demand. It isn't going to go away. I'm not sure there will ever be 'spare' capacity within Rheumatology. Nice thought though!

Lyn x

DON'T EVER THINK THAT YOUR BEING A PAIN. The best thing that I ever did was to go and complain to my MP because of the appointment cancellations due to illness and lack of staff. It took alot of guts for me to stand up but it worked I have never had the problem since. We should all stop being so nice when we don't get the support that we sometimes really need... Good luck but don't be afraid to complain....Caroline.

Hi Sue,

As others have said call and ask advice or put it in writing so it is documented and there is no excuse for delays. I would definitely make appropriate calls to get an appointment. Your hands can so easily deteriorate with lack of treatment so do call and get that much needed appointment.

Good luck and I hope you don't have to wait too long.

Take care Lorna x

Well Sue,

Glad you rung them lets hope they ring you back on Wednesday.

Rose

Hi Sue,
Don't feel guilty, you're using an appointment which was free and you need it. Ok easy said, I'd feel the same as you but looks like our services are not going to get any better with the impending privatisation of the NHS so make the most of it! I heard yesterday that 2 of our Rheummy consultants who have left are not going to be replaced so they're going to be like gold dust. I was told at my last appointment that I'd have a review in 2 months and the appointment didn't arrive so I rang and someone vaguely said, oh yes, it'd been overlooked. Unfortunately just can't trust the system I'm afraid. Good luck
Sara

Hi Sue,

That's fab you have got an appointment. Why do you feel guilty, if you had had your own appointment you would have been seen some time ago. Go to it and be glad you got help, before you end up with problems caused by waiting. You are as entitled as anyone to get the appointment, if family can't be supportive who can. Hope your hands settle down soon, I remember it well being really ill and getting a cancellation. Had I not got it I would be in a right state now and not as well as I am because it was acted upon quickly. So please do not feel guilty, you deserve your daughter being able to help.

Take care Lorna x