don't know whether to make a fuss or not :/

bluebell

I saw the rheumatologist for the first time in May, but typically wasn't too bad at the time i saw him of course. it was a good appointment though i think, and he diagnosed it as psoriatic arthritis. since then I've had blood tests, which showed no inflammation, ultrasound just on my hands (though my feet are far more painful) which showed some inflammation in a few joints but no damage, and I've seen a hand therapist who has given me splints to wear at night time.

when i saw the rheumy in May he gave me a routine appointment with him again for December but said if i get any inflammation or a worsening of problems again before then i should call them straight away as he would like to see it 'active'.

so, since then I've been keeping a pain diary which builds a heat map looking for patterns etc (yes i'm a geek), but i haven't called as the pain i have been getting only really lasts a few days in any particular place and it's rare i can actually 'see' any inflammation. the last few days though my ankle and feet have been quite bad and i can definitely see a swelling on my ankle. i decided i would actually call but ended up transferred a few times and through to a dead line, then tried again and ended up at an answer machine. i did leave a message but haven't had a call back... that was Wednesday.

so.... questions for all you much more experienced and wise people:
1. is it usual to have to leave a message and not get a call back for a few days?
2. should i be calling back and chasing?
3. the swelling on my ankle is like a squishy golf ball just below the ankle bone... worth going to see them with? i've taken pics so i'll show next time anyway (December?)
4. he's only done the follow up tests and treatment for my hands so far, but my feet are worse than my hands... should i be hassling them? if so, how?

this is whiney and rambling, sorry.... i don't know what to do

dreamdaisy

Replying in order to your questions:

1. In my experience yes. If I need to ring I ensure I leave all my details, name, hospital number, brief reason for call, request for a call-back and confirmation of my numbers but even that detail does not guarantee a call-back. I haven't called my helpline for some time now, I know the department is at breaking point and, as I am doing the majority of my admin on their behalf I honestly cannot be bothered with 'troubling' them further.

2. Chasing is an option but it is the summer, staff are on annual leave and everything generally slows as a result so be prepared to chase and chase again.

3. If its causing discomfort then yes, tell them that it's troubling you. Please take pictures in case they call you in.

4. If your feet are worse then they should be told so be prepared to ring and chase. What meds are you currently taking?

I am struggling with my PsA at the moment, I link its increased activity to the heat and humidity which is plaguing my part of the country (and this despite my triple immuno-suppressant therapy). My scalp is springing to life with fresh pustules every day and the rest of my skin ain't that happy either. My OA, however, is being very quiet (but not for long!)

I hope you someone contacts you soon but it won't probably happen until next week. DD

stickywicket

In my experience consultants work on a 'patient's needs' basis and appointments' clerks on an 'hours in a day' basis. Thus a consultant may happily tell a dozen patients to come back in three month's time oblivious to the fact that his slots are chock full for the next five months.

In answer to your questions:

1. Yes. I'm totally with DD on this. We must do our own admin.

2 & 3. In this case – I think so because it will help the consultant if he can see it when it's bad. However, it's summer and the NHS is very short of cash so it might simply not happen ie it might have gone down again before you can get an appointment.

4. I don't know. Certainly mention this next time you see him but it's just possible they can tell more from hands than feet.

It's neither whiney nor rambling, bluebell. In a perfect world you'd have rung in and got your appointment. The NHS is far from a perfect world right now.