Hello
my RA is still not under control after 6 months
I am not happy with my consultant as constantly being told my blood markers are normal.
despite that I have mri saying it's active. they have given me a das score of 3.5.
I need to change consultant and hospitals fast to another place in london, any idea how I can do this ?
please advise
thanks
I think you will need your GP to make a new referral.
yes I have a hazy memory but I was recommended my present consultant by a contact on healthunlocked. With reluctant support from my GP (neither of us wanted to go down a private route) I saw them privately and subsequently I went on his nhs list. Despite reminders he has never asked payment. We’re in Scotland, in the same department but the first consultant has moved on happily.
you just got in on time I think , as they’ve stopped that’s in Scotland. You’re basically stuck according to where you live. I tried that too and my GP wrote to the hospital I wanted and was also refused .
I’m not sure this would happen fast. When I changed it took over a year to see the consultant!! Good luck!
To change hospitals I believe you’ll need a new referral from your GP. However, you may be able to change consultants at the same hospital yourself. I did this. I found the name of a different consultant and then phoned the hospital switchboard and asked for their secretary’s email address. I emailed the secretary simply saying I was currently seen by Dr xxxx but was wondering if it was possible to be on Dr yyyy’s list instead. I didn’t go into detail why I wanted to change. I received an appointment with the new rheumatologist for a couple of weeks time. It may have helped that I chose a rheumatologist that was new to the department so her list wasn’t full. It might be worth a try in the meantime whilst waiting for a new referral.
Your GP is the way to go but it takes time plus you'll then need to wait for an appointment at your new hospital. You didn't say what meds you're on . I've been on a few different ones over a 17 year period . Das has been up and down. I've been on Benipali for 17 months and all's good. I can touch my toes now 😀
to transfer to another hospital your gp needs to refer you for a 2nd opinion. If you want to remain in your current Trust, you can ask the Consultants secretary if you can be transferred over. If they say No, then contact PALs who should be able to resolve it. There is no fast route unfortunately, you’re not seen as a priority as you are currently under the care of a rheumatologist. The only fast route would be private.
I was also unhappy with my GP referred consultant, so I did some research on my home laptop and found someone closer to home who was involved in research and trials that gave me more confidence. Went back to my GP for a referral who said it would be at least 3 months. The consultant also did private work so I contacted him at his hospital for a private consultation and saw him the same week! Then switched back to NHS care. Cost me £200 but money well spent. Good luck 👍
You can change hospital but it won't change your blood results.
I was in the same situation at the start, 6 years ago, really active disease brilliant bloods. Then one day my bloods went wonky and the consultant got all excited because my DAS would go up. Now I'm on biologics.....and still in lots of pain and stiff and fatigued.
RA is a marathon not a sprint I'm really sorry it's happened to you, I wouldn't wish it on anyone, but for your own wellbeing I think you need to take a breath and be patient. None of the treatments work quickly, nothing changes overnight (unless it's a flare up) so yes look for a consultation with whom you can get along but take your time because this is long haul.
It won’t change the blood results but different rheumatologists put more or less emphasis on blood results.
I’ve had very active RA for 16 years. My bloods never show raised CRP. (Still waiting for them to go wonky!) Thankfully my rheumatologist doesn’t just look at blood results but puts much more emphasis on symptoms.
mine keeps pointing to my just in range blood results and says I am worrying about nothing when the scans have identified chronic inflammation, synovitis and erosions...
I’m afraid six months is a very short period of time. It generally takes a bit longer to establish a pattern. Mine took around two years to find it’s level.
Not sure who you see, but one of my clients Taher Mahmud is a private rheumatologist in London at London Bridge and The Shard with an excellent reputation if that helps?
You have been on Mtx & Hydroxy for ? 6 months…..is that right?
In RA terms that is not a very long time. What difference to your treatment are you thinking might occur ……if your DAS score was increased? Changing drugs or consultant too soon might not be the solution.
Maybe give it more time? Have you asked your rheumatologist for a drug review, or spoken to your rheumy nurse to ask her advice?
Changing consultants in today’s present situation in the NHS could mean a really lengthy wait for an new appointment. I know it’s no consolation….but RA really is a marathon…not a 100M sprint to get the right drugs first go…..so why not try voicing your concerns now…rather than chancing a long wait for a new rheumatology appointment?
When I was first diagnosed I wanted, if ever I needed treatment to have access to a CLL specialist. I was under a local haematologist . I googled consultants specialising in CLL and found one at a nearby health authority. Contacted his secretary, he did private work alongside NHS but he saw me as an NHS patient. He said if ever I needed to see him he was happy to. However have remained under my local authority till now, though there is talk of treatment!!! I bypassed GP. Good luck.
My RA took 2 years to be ‘under control’. The drugs don’t magically cure things. RA is a chronic condition. I would read the NRAS leaflets/ website.
As others have said, this is a marathon not a sprint. Ask your GP to refer you to IAPTS who do a ‘chronic illness’ course to help people come to terms with their diagnosis.
It might be easier to change consultants by complaining to PALS at the hospital. My sister did that very successfully.
hi
It’s taken me 5 years to get it under control- it’s like roulette I think.
Which part of London are you under - East/West/south/north?
I am thinking about changing trust as it’s a bit of a trek now to east London
You can ask for an internal referral if you are outside of your normal trust catchment and live in another’s.
I'd suggest being careful about changing a bad one is better than none and Rheumies around here in North Kent are in very ,very short supply.
As I understand from your letter, your point is your present consultant thinks your doing ok because your blood tests are fine? I can sympathise as my old consultant only went on my blood tests and never examined me ever no matter what I told her. I asked my GP about changing consultant and was told to try to stay at the same hospital as it would take a long time to change hospital and consultant. I did the same as some others on here, looked up other consultants at my hospital and asked people I knew who went to the same hospital department and chose the one I thought would be best for me. I rang the hospital to get that consultants secretary phone number and rang her. I just said I wanted to change my consultant to this one, could she advice me of the procedure. It was very straight forward and quick. I’ve never looked back and incidentally, my new consultant doesn’t solely go by my blood tests. She asks me how my pain is and examines me. In fact, she told me she wasn’t too interested in my blood tests as many patients always have normal bloods but very active RA as I do. I agree, RA treatment is a marathon but you also need to have confidence in your consultant. When you don’t have that, life is tough as I found out. By the way, my consultant also told me if a treatment hasn’t helped by 6 months, it’s not for me. If it’s helping in a small way it can be tweaked. Good luck.
thank you so much, yes it's where I am but sadly the other consultants at my hospital are all fairly new in experience, I would like a new consultant with years of experience and good reviews. that's not easy to find and probably it means changing hospitals, which again is a risk itself. I do not feel that I am in a good place right now and it's all adding to stress anxiety and depression.
I’d go for a younger one they tend to be more up to date and the young registrar found my AKI and saved my life. RA sadly is not like having an infection when there is a straightforward hopefully course of treatment. And it has a pathway you may get no different treatment elsewhere so it could be you’re looking for a magic bullet that doesn’t exist. I am sympathetic but RA is a marathon not a sprint and takes time to get the right medications sorted out and they take a long term to work anyway. Try to be patient and you’re looking for something that you may never find as your expectations are not really realistic. If you can afford it going private might help as they usually have more time, but it doesn’t mean your treatment will be any different or better and could be very very very expensive. So I’d suggest giving your consultant a bit more time and see what happens next and your lucky to even see a consultant in some ways as here and my hospital is linked to St Thomas’ we see the consultant or a Registrar then a consultant nurse rotating every 6 months. So I’m sorry but things are very difficult these days, it’s sad but sometimes you have to give things time and you could jump out of the frying pan into the fire.
Sorry to hear this, if you would like support, information or just someone to talk to, our NRAS Helpline 0800 298 7650, is open every weekday from 9.30 am to 4.30 pm. Regards.
HI please can you tell me how anxiety causes flares? does it increase the wbc and neutrophils in the blood tests ?
I am on the ceiling today
thanks
I can only speak from my experience. My new consultant is young. Certainly in her mid thirties. I’ve found the older ones are so tired and set in their ways but I do understand your worries.
My first consultant was awful he was never there was very rude and constantly just looked at my CRP levels which were always normal even though I couldn’t walk and would scream in pain when he touched me. I think he thought I was making it up. Thankfully he retired and my new much younger consultant is absolutely awesome. Don’t be afraid to see a new young doc in my experience they’re loads better haven’t been set in their ways and don’t care. I don’t think they’re all like that I was just unlucky. Perhaps have a word with the specialist nurse they can be a good way to have meds etc looked at. I hope you manage to resolve your issues and feel better soon maybe stick with the same hospital but swap consultant easier than getting a new referral elsewhere.
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