I was newly Diagnosed with RA in 20th April 2015 which was my first appointment with my Rheumatology Specialist at Hillingdon Hospital...
At this appointment he Doctor took my blood pressure checked my finger joints by touching very lightly on each joint prescribed some meds and to be honest that was about it!
I came away a little despondent because I thought as I had just been diagnosed I would have had a much more careful look at all my joints ..maybe Scans etc..
Any Way I have been getting on with things on my own ...Feel Very alone! Suffering Badly with pain in my shoulder and general all over pain...Feel totally exhausted all the time!
... and have just had my second appointment some 5 Months after the first! Again The doctor Pressed lightly on my finger joints Elbows and shoulders ... Still had all my clothes on so don't know how he could examine my shoulder!
Promptly said my DAS was 3.2 slighlty less than first time and told me to increase my medication .... I was literally in there 10 minutes! I asked if I could see someone sooner next time and was told NO ... they don't have the staff and they would send me a letter in 2 months time so I can ring them and make an appointment which if as before would be another 3 or 4 months..
This seriously is not good enough
I feel
A. I have a right to regular appointments
B. Should not feel alone to cope with this Disease on my own
C. Should be having more thorough checks ...especially with my shoulder
I found on your website the NICE Guidelines for RA Patients and it does say that in the first year you should be seen every month!
I wonder what your views are on this and maybe you can guide me in the right direction to try and find better care for me and my Disease
Written by
gailboddy
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I quite understand why you're concerned you've not been offered more appointments, it's taken me quite some time to come to terms with a change in how less often I see my Rheumy here & I was diagnosed in 2008. Unfortunately I think you've answered your question.... your Rheumy told you they don't have the staff. Rheumatology as a department is notoriously underfunded & although the NICE guideline may suggest monthly DAS28 examinations for the newly diagnosed until treatment is controlling the disease I'm afraid if that was generally the case fewer appointments would be available to all. Not that it's a solution, I agree more frequent appointments would be preferable for those struggling, it would maybe help control us earlier when newly diagnosed & with that less chance of future complications/intervention too.
You should be having at least monthly drug monitoring bloods taken, maybe even fortnightly for approx 6 weeks just now & then a return to monthly if all is well as I am having recently had my MTX dose increased. These results will be checked by your Rheumy or GP, possibly both so if there are any anomalies in your levels they will be acted upon.
Scans aren't normally requested unless there's a considered need although you should have had a chest x-ray before starting to take MTX. Did your Rheumy pass comment when you mentioned you're having problems with your shoulder? Your fatigue is pretty normal in the early days, it's the disease not being controlled enough & quite normal. Unfortunately most things you're describing are quite normal, but you're not to know unless your Rheumy has taken time to explain or you've researched online which again goes back to underfunding & resources available. As a matter of interest was it the same Rheumy you saw last time?
Were you given a contact number for a Rheumy nurse? If so they're usually our first point of contact in between Rheumy appointments if you have any problems. I see a Rheumy or Registrar every 6 months usually but have a nurse appointment at the 3 month stage. If I need help in between I can call or as happened recently my GP requested an earlier appointment with my Rheumy. We do need to be proactive though. I always make bullet point notes for my appointments & if I have pain or inflammation in a particular place for longer than normal I tell my Rheumy & take pics if it's something persistent or comes & goes regularly between appointment. Don't try to be brave, your Rheumy needs to know what hurts & if it's constant or if there's any relief from that pain, it forms part of his assessment of you.
Oh something I meant to mention on your previous post was it's possible that your Rheumy decided it was prudent to start you off on 15mg intending to increase by another 5mg depending on your levels? Each differ in protocol, some prefer to start their patients on a low dose (I've seen here some started on 7.5mg) but my Rheumy was like yours & started me on 15mg.
I hope all this helps! It's a huge learning curve when newly diagnosed isn't it?!
It does seem harsh, but sadly there seems to be a huge shortage of rheumatologists so the guidelines are just that - guidelines - and there is no absolute requirement that hospitals must follow them. Which is not saying it's good enough, as it isn't, but just that it happens a lot. You could always ask your GP if there's another hospital you could be referred to. I'm only seen every 9 months or so now, and am rarely examined closely - and have only once in 5 years had to strip for a thorough examination. But there is a helpline where I can leave messages if there's a problem. So there is a safety net of sorts.
What meds have you been prescribed, and do they mean you have regular blood monitoring (depends on the meds). As blood test results will also show how you're doing. The other thing is to ask your GP for a copy of the consultant's letter, and ask to go through it with your GP as this should provide more information.
When I was first diagnosed in 1999 I was supposed to see an occupational therapist (in practice not useful), a physio (actually very helpful to have exercises esp more recently for the shoulder), a podiatorist (cant spell) and I have paid privately for a counsellor, but that was since running into some trouble.
I've had xrays - mainly because of knee problems. An MRI scan when a previous rheumy was doubtful about the diagnosis, and another scan to check osteoporosis.
And used this forum, partly just to learn about what happens with other people.
Oh yes and a while back I did a free online pain management course which was mainly about distraction and meditation, but quite helpful.
I think a good relationship with your GP is helpful, although my rheumy accepts it when I write him a letter or phone his secretary, the GP-> hospital route is more effective.
I live in Scotland where I think the pressure on the health service isnt quite so bad as in London - yet. But it is useful to know what you should be getting.
Even when my rheumatologist says she'll see me again in 6 months there is never an appointment available in less than 8 months, usually more like 9 months. There aren't enough consultants to go round.
I was diagnosed March 2014 and sent away with meds and a leaflet explaining the meds. I saw a Rheumy nurse in May 14 who did my one and only DAS ever (none since). My next appointment was July 14 with a registrar and then Oct 14. Then I didnt see or hear from Rheumy until April 2015 when they discharged me back to my GP. After complaining to PALs I am waiting now to see a Rheumy for second opinion which they say may be 6 month wait. I feel like I am totally on my own and am fed up with fighting for everything. Joolz.x
Personally I think this is bad. When I was first diagnosed in 2010 I had appointments every month. I then moved to a big city when I went back to work and even there I was seen every 3 months while getting my scripts from the GP. I've since moved back to Northumberland where demand on rheumatologists probably isn't as high but every time or had a flare up it started a new medication, I've been seen regularly. When I started on sulfasalazine, they saw me every 2 weeks to take bloods. It was the rheum nurse rather than the consultant but I felt well looked after.
I now go every 6 months but I have the secretary's number should I have any trouble and they see me ASAP.
I would push until you get the treatment you deserve. RA is a progressive disease and if they don't get it right, things could very quickly spiral and it could be really unpleasant for you. Ring the secretary, ring the outpatient department, ring the rheum nurses until you get seen.
I had X-rays, scans and countless blood tests at the start so I would be concerned if they didn't offer you anything like that.
Thank you for your reply ... I'm feeling a little scared about the lack of care I seem to be having.... I will try and push for better care ... but to be honest its not easy... I will ask my GP to refer me to another hospital ...Fingers crossed
You are very lucky with the treatment you have had. I got one scan and an xray of my hands (which showed a problem) at the first appointment but this was only done because the Rheumy was more interested in my ruptured achilles so wanted to scan these and also scanned my hands which showed Sinovitis and gave diagnosis and sulfasalazine. I was told to get a blood test done after one month and given the paperwork to do this. Then another scan was done 3 months later and 2 days after a taking MTX so this showed no inflammation as the drug was working. It was the second scans results which they used in April this year (10 months later) to say I had no inflammation so I didnt have RA. I didnt have anymore scans or xrays, have only had 4 blood tests in 18 months requested by rheumy and have never seen the same person twice in Rheumy and at first wasnt even given the helpline number I had to find out from a friend that there was even a helpline. I think they see my weight and try to blame everything on that and fibromyalgia and think I am a lesser person who doesnt deserve proper treatment. I am sick of fighting for help. Even the pain clinic is acting as if I dont exist. Sometimes I wish I didnt.
Sorry to hear about your recent diagnosis and that you were disappointed by your first consultant appointment. You are certainly in your rights to get a second opinion if you are not happy with your treatment and your GP can refer you to another consultant. You can also go your local PALS (at Hillingdon Hospital) and their details can be found here: thh.nhs.uk/patients/advice/...
The following information on our website may be helpful, particularly step 5 - 'on-going treatment'. nras.org.uk/the-inflammator...
You are certainly not on your own. As you will have already seen, there are lots of very supportive people on the HU site who are happy to share their experiences with you. Others have suggested the specialist nurse helpline, which for Hillingdon Hospital is Helpline: 01895 279687 (with answering phone).
Our own NRAS Helpline is also available should you need us at all in the future - 0800 298 7650 or email helpline@nras.org.uk (9.30-4.30pm Mon-Fri)
Hi Gailboddy. You and I have very similar experiences. Same hospital. I found the big gaps between appointments very difficult, still do. I'm having difficulty finding the right treatment, so came off one drug a couple of months ago. There is no appointment to get on to the next one until the e no of October. But I have found the rheumatoid nurse to be helpful . Also, they do seem to be good at referring to physiotherapy. I saw a physio last week who seems completely switched on to my difficulties. She was so nice and is sending me for hydrotherapy. Have a look around this website and see if you think there is a service that would help you . You could ask your HP or ring the nurse and ask for help with pain management, or if a physio appointment would be useful to you. Wishing you the very best. It's a horrible disease. I still get very tearful and upset about this big and unexpected change in my life, but there are good days too. Stay in touch. We can compare notes. Sorry about misspellings. I mean GP, not HP! That's what happens at nearly 2am. Pain in my feet is keeping me awake!. Hang on in there. I did think about asking to go to another hospital, but I could t cope with travelling, and there's no guarantee of anything different . Let us know how you get on.
I did right a letter of complaint and 2 days later was called by the Nurse who has made an appointment to see me in 2 weeks time .... Just shocked it took complaining to get to see someone sooner ...
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