My consultants seem to change more frequently than the weather. I am scheduled to see a new one on the 2/2/2015. Although I am a confident person I tend to always forget the types of questions I should ask so any advise will be greatly received. I've been taking enbrel for just over a month now with 10mg of steroids per day. Some questions I was pondering were:
1) I don't have any kind of pathway plan for RA
2) I have had no tests for associated cardiovascular disease since being diagnosed with RA in 2012
3) I really struggle with my feet yet haven't been referred to see a foot specialist for help
4) I have not been referred for any physiotherapy to help my shoulder and knee movement
Any other ideas would be greatly appreciated. I am based in Wales so treatment may be different to England
Written by
RobbieM
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Always take a note book or keep your questions on your phone/tablet when you go to an appointment.
Sorry to hear you are seeing someone else, it's not nice feeling like you are being passed from pillar to post. I think one of the big failings of the NHS is continuity of care.
I've had RD since 2008 & had great treatment previously though little did I appreciate just how much better than what I receive now. Ooo, alert, I feel the grumps starting. This could have been me writing since I started continued treatment when I returned to the UK from living abroad. The differences are amazing & I need the same answers & not sure I'm of much help but here goes...
1. I also need one. None been offered even though I've asked for one as I have always had one at the end of each appointment previously.
2. Neither had I since first meeting with my Rheumy here in July last year but when I needed to return to Arcoxia she requested my GP do a full CV check to ensure I was ok to go back on it. Fortunately all was fine but unsure just when one would have been done otherwise. I had one every 6 months previously, ordered in the hospital by my Consultant.
3. So do I. I keep getting told they're not included in the DAS 28, nothing else offered & my feet are my worst affected by RD. I've had one x ray of each foot previous to my first appointment, nothing since despite complaining of problems. Always included in the full DAS previously as all joints affected by RD are covered & images taken yearly at least.
4. Me neither. Both have become worse lately due to OA problems increasing. Offered sheet of exercises but have found some myself for my knees & the one's my physio gave me after whiplash work better & are simpler to do when my shoulders & neck are sore & stiff.
Looks like we're pretty much in the same boat even though we're in different countries (I'm in NW England) & of the opinion things needs to change. I don't understand why it differs so much from hospital to hospital, surely they're all following the same basic guidelines? Sorry, as I said not much help but take some comfort knowing you're not alone!
You've identified really good things to ask about. All four are perfectly reasonable & IMO you should simply ask for these things to be implemented.
Re. the first one, you might like to ask specifically about Enbrel e.g how much improvement is required for it to be deemed a success, how long do you need to give it before he /she can say it has or has not been a success and which drug would be next if you 'fail' on Enbrel. Long-term steroid use isn't ideal, so you might also want to ask where things are going with the steroids.
Will you let us all know what the response is to any requests you make? I think it's definitely a case of 'if you don't ask, you don't get' a lot of the time, so if you get what you ask for that'll encourage others to ask too, I bet!
My experience may help, I didn't do well on enbrel, but changed seamlessly to cimzia and I think it's graduallyworking. I was on steroids like you and came off it gradually. Not easy. I hope you have a good appointment
I write a list of the things i want covered in the appointment. At the end of the appointment as signaled by the consultant, I look at the list and check everything has been covered while he looks at me with controlled irritation. I then repeat back to him what i think he has planned for me - sometimes we have miscommunicated, so this is a useful safety-net.
I know i am being a nuisance in his eyes, but I need his attention and expertise, so I am assertive to get it.
Hi taji,
sorry that you seem to have no continuity with your consultants. As far as being referred to see podiatrists or physiotherapists goes, sometimes you have to be a bit pushy and keep asking to be referred yourself. Wales tends to follow the NICE guidelines for rheumatoid arthritis and under these if you have foot or other joint problems you are supposed to be offered treatment by a podiatrist or physiotherapist:
Hope this helps taji and hope you get the support you need.
Regards
Beverley (NRAS Helpline)
Hello there
There are quite a few resources NRAS can send you if you would like. One is the booklet called RAise it, which helps people to get the best out of their consultations and clinic visits with suggestions of some key questions. It would also be useful i think for you to have the 10 Healthcare Essentials. Here are links to both via the NRAS website.
NRAS is here to help with lots of information and support whenever you need so please if you have any further questions you can call the helpline 0800 298 7650 or visit the website nras.org.uk
You didn't mention what part of Wales you live in but we also have volunteers you can talk to and NRAS groups where you can meet others with RA which may help.
I live in Scotland and suffer from severe wrist pain 24/7 which I have had for the last 14 years and have been recently told I was mis diagnosed , whilst the treatments would have been similar , I sympathise with your situation .
I now take more control of my health care , record all consultants I see , and all medications I have tried , before going to see a consultant I type down all the questions I want to ask even leaving a space so I can jot down the answers , and I have had to be firm and seek better appointments , also ask when you will receive further appointments or receive medication , at my local hospital normally it takes at least 2 weeks for a letter to get out and go to my GP . but with a little pressure in these modern times an e/mail can be sent , I always tell them its ok , they are not suffering . so its ok to be firm , but polite , sorry i'm rambling on a bit , hope things improve for you , Ian
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