Hi there hoping to get some help I have my first NHS Rheumatology Appt on the 6th March

Hi It’s Julie here I have written on here before but I’ve been quite poorly hence the silence.

Just a quick question well couple of questions really. I saw a Private Rheumatologist in October 2022 I don’t think I’m able to name the person nor the hospital but if I can I will. Anyway this particular Rheumatologist was very short with me she didn’t check any of the places I had pain in which is my hands, fingers, wrists, elbows, ankles, back she just looked at my hands I was in there for maybe 20 mins then she just said go and do wax hand baths and we will take bloods. Anyway she wrote back saying she didn’t think I had Rheumatoid Arthritis even though my doctor has said it was inflammatory arthritis and my markers were high. I religiously did my hand wax baths and I still do but nothing helps. I then got ill with shingles, I have Lymphodema and my legs have to be bandaged every week as they keep weeping that’s been since August 2023. Still ongoing.

i then asked my GP as I’m in such a lot of pain if he could get me on to the NHS Rheumatology list he did in September of 2023 and last week I’ve received an appointment for the 6th March.

What I needed help with is firstly I’ve tried to find out who I’m going to see because the Private Rheumatologist who did nothing for me works at the hospital that I’ve been referred to there are only three Rheumatologists that work there and she is one of them and I just can’t go to see her again she led me down a path that eventually left me with the Muscoskeletal Team on my private insurance telling me mine was a chronic condition and they don’t deal with that and I can’t go privately to another Rheumatologist and I know it’s better going through the NHS. I did ask my doctor if he could ask for me not to see her but he didn’t think he could do that.

The only way I can think of trying to find out who it is is by actually writing to the Rheumatology Department at this particular Hospital, my dads helping me with all this I’m 50 but I have such brain fog and extreme anxiety hence me reaching out to anyone on here. Has anyone had this happen to them? Am I allowed to ask to see another Rheumatologist if I find out it is her I’m seeing? I think I am but I just wanted a bit of confirmation.

It would be ridiculous me seeing her again as she was very dismissive and didn’t listen to me and didn’t check me properly.

Also any of you that have Rheumatoid Arthritis or were sent for a diagnosis by the NHS what will they do when I get there is it examining all my joints, should I send them notes beforehand or bring them with me? Will I have x rays and blood tests. Just anything you can say will help me. This all started in March 2022 and it’s now February 2024 and this was an expedited appt as my inflammatory markers were so high again.

Im in such pain I’m stiff all day, I haven’t been able to work I’m on the highest level of DWP just any help would be so gratefully received. Also having this pain has led me to become extremely anxious as I’m thinking will someone medical help me at all.

Im sorry this is so long any help any of you could give me would be great and would it help ringing the advice line I’m not great on the phone as my hands are so sore and with my ME brain fog I tend to go off on a tangent but if anyone thinks that might help I would give it a go can I just ring up or do I have to book an appt?

Really any help would be brilliant.

Thank you everso much if you read this I’m so grateful.


Julie Cotterill

Comments

  • lindalegs
    lindalegs Member Posts: 5,391

    Hello Julie, @Jewels1973

    I would think it would be best to phone the hospital to get the name of the rheumatologist you'll be seeing. You need to do this because all this anxiety might be for nothing and it's doing you no good. Once you know who it is, you can either relax or ask to see someone else instead.

    I feel it isn't an unreasonable request because if you have no confidence in this person then it'll be pointless seeing them. If it is the case, then you might have to make another appointment to see a different rheumatologist, but at least you're doing something other than worrying. You have a month to ring the hospital, but, I suggest, doing it sooner rather than later because you don't need added stress when you're in so much pain.

    Good luck.

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • Jewels1973
    Jewels1973 Member Posts: 49

    @lindalegs Thank you so much for responding I’m really grateful I have tried ringing them I rang the number on the letter I got sent and that turned out to be a call centre for the hospital (I didn’t think they outsourced things like that). I asked if my name was attached to a Consultant and she said no. She gave me the number of the Rheumatology Nurses but you can’t get through, sorry I should have explained that in my initial post brain fog again! There’s only an option to ask for more medication nothing else. I think probably I’m going to have to write them a letter as I’ve tried getting through to them & for some unknown weird reason you can’t talk to anyone. Thanks for all your good wishes they are very gratefully received. Julie x

  • jamieA
    jamieA Member Posts: 657
    edited 6. Feb 2024, 09:42

    Hi @Jewels1973

    If I were you I'd write down all your questions and symptoms beforehand and take a notepad to write down the responses. Don't let yourself be hurried. I'd also take someone with you if you are comfortable with that. Is it possible for you to get the telephone number of the hospital you are attending and call them and ask to be put through to the rheumatologists secretary? You could then ask which rheumatologist your appointment is with. I changed the rheumatologist I was first given - he was arrogant, cold and not in the least empathetic. I wrote to him and said if he wasn't prepared to help me I wanted referred to another rheumatologist. The rheumatologist I now have is much nicer and is proactive.

    I hope you get treatment that works for you soon.

  • Jewels1973
    Jewels1973 Member Posts: 49

    @jamieA Thank you everso much for responding and I’m sorry you had the same experience as me initially. So you are allowed to change a Rheumatologist? That’s a good idea actually going through the hospital and seeing if I can talk to someone that way. That’s exactly what my private rheumatologist was like very arrogant and I think she took one look at me thought oh she’s got diabetes and is nearly 50 it’s going to be that she actually wrote that to me no asking if I wanted a follow up appt she just shoved me to a private physiotherapist then the private physio could see I wasn’t getting any better then I was sent to see a hand consultant all privately so it was eating up the amount I had on my private insurance and then in the end my insurance company wouldn’t pay for anything else otherwise I would have asked for a different private rheumatologist. I’m so glad your rheumatologist now is much better and helps you. I’m going to take my dad as I have ME and have brain fog and I will bring notes with me it try and make them short. I might seem stupid now what is RF?


    Thanks so much for letting me feel like it’s happened to other people of course I wish you hadn’t had a bad experience but I’m so glad you can change rheumatologists.


    im really grateful.


    Julie x

  • jamieA
    jamieA Member Posts: 657

    Hi @Jewels1973

    With me it was complicated by the fact that I was hospitalised with pneumonia a week after my first appointment with the arrogant rheumatologist. He'd actually told me at my first appointment that I had to 'suck it up' regarding my inflammatory arthritis - psoriatic arthritis(PsA) in my case. My rheumatology hospital doesn't have an admissions ward so each of the 6 times I was admitted to hospital with pneumonia, PsA and then a heart condition I was admitted to a larger hospital where I was seen by different rheumatologists. I probably saw 10 different rheumatologists in that time none of which were as arrogant and some were actually very helpful and empathetic. I made the decision to ask for a different rheumatologist after that. I put it in writing to Mr. Arrogant and also requested my GP to put in a change request. The rheumatologist I have now is young and she's a world of a difference. English isn't her first language which is actually a help as she speaks more slowly. I had to laugh at our first meeting when I expressed how grateful I was for the manner in which she was addressing my PsA and treating me as a human being. She said she and her younger colleagues were trying to move away from the manner of 'the older fuddy duddy consultants.'

    I assume RF is Rheumatoid Factor and is a type of protein found in the blood of people who have rheumatoid arthritis. My PsA doesn't caused raised RF levels but does cause raised levels of ESR and CRP in the blood.

    It might be a good idea to ask your dad to take the notes for you.

    I hope you get help soon.

  • Jewels1973
    Jewels1973 Member Posts: 49

    Hi @jamieA God you’ve been through a lot I’m so sorry you’ve had to go through all that.

    I’m so glad that none of the other Rheumatologists were like the first arrogant one.

    Oh that’s lovely that now after all you’ve been through you’ve found a great new lady Rheumatologist and I’ve found that when someone’s first language isn’t English they do tend to explain slower so it’s easier for you to take it in.

    im really glad to hear that they are going away from the fuddy duddy Rheumatologists that’s what we need.

    You are very brave going through all that you have done thanks for telling me what RF is and I think my dad will take notes as I can barely write at the moment well for 2 years I haven’t really been able to my fingers have gone a bit mangled and I used to be a work from Home Secretary now I can only type with one finger on an iPad.

    Sending lots of healing thoughts to you and thank you for telling me your story it’s very good of you too and I’m very grateful.

    Julie x

  • Trish9556
    Trish9556 Member Posts: 449

    Hi @Jewels1973

    @jamieA has given you some sound advice here and another suggestion I would make is you could record your appointment on the voice recorder app on your phone? You would need to ask if the consultant/dr/registrar/chocolate tea pot is happy for you to do that. Tell them you struggle to remember things due to your medication giving you brain fog. Most would be happy to let you record the appointment. If they don't they're not the person you need to see.

    I've added on my thread a suggestion of taking a precis of all your medication/medical history along with you to give to the person you're seeing. That way, you don't forget to give them a piece of vital information that they need. Just update it as necessary so it's always handy if you need it in an emergency.

    It should be something like

    name/address/dob/nhs number/contact number

    GP surgery, name of GP and phone number (you would be surprised at how many consultants write to the wrong GP and usually in my case, one that left before covid).

    bullet points of all the medication you're on and dosage. You could just take your latest repeat prescription slip.

    bullet points of all your medical history - it doesn't need to be detailed, just what you have and when you were diagnosed I would also include physio appointments in your case.

    You should also remember that Private doctors are NHS doctors sidelining and earning a bit more money so the chances are high that you will see somebody you have already seen so, do as others have suggested and phone the appointments team and find out or phone the Rheumatology team and ask. Just say you would prefer not to see Dr X - you don't need to give details

    Try not to stress too much about your appointment - dad will be there to look after you and as we all know, dads can be scary!

    love n hugs

    trish xx

  • mosborn11
    mosborn11 Member Posts: 20

    Hi Julie, I don't have the answers to all your questions but I can share my story which I hope helps.

    I was referred to the Arthritis Clinic at my local hospital in November. The appointment came through in January. Prior to this appointment my GP had examined my joints and also had done some basic blood tests. I'm also happy to share the name of the hospital, but I don't know if that's allowed so I won't just yet. You could always message me?

    When I saw the consultant in January, she asked me so many questions, which actually spanned across about 10 years worth of my life (despite the symptoms only being recent). She sent me for lots of specific and specialised blood tests, testing my genetics and R factor etc. She examined all the joints I said I had pain in. I also had to give a urine sample and they took my height, weight and blood pressure. She then put me on a tapered dose of steroids, and asked me to keep a symptom diary. I came back in a month and we went through all the results and talked about other medications etc.

    I think it's always a good help to go in with as much information as you can. Whether thats notes on what you've been through, or a symptom diary or similar. I also think checking in on when your next appointment is would be good. From everyone I've spoken to on here, it does seem a bit like it's often, "try this drug and we'll wait and see if it gets better" which is fine so long as you have regular appointments.

  • Jewels1973
    Jewels1973 Member Posts: 49

    @Trish9556 Thank you so much for all that information I hadn’t thought of using the recorder on my phone that’s such a good idea. I sound like a child taking my dad in I’m 50 but you’ve got that right with my dad he always has a way of getting what he wants he’s 77 but acts like someone of my age and he’s still working & I haven’t got a husband so dads stepped up to help me. That’s helped me so much I will make sure I have everything to hand & I hadn’t even thought that they might not have my GP details I will definitely write that down. I tend to type things in my notes when I’ve had an appt so I’m sure my brother wouldn’t mind typing them up for me & good idea about the prescription I always save mine so I can put that in as well. Honestly you’ve been so so helpful I’m going to look at your post again and write down what I need to take so they have all my information. That made me laugh you calling them chocolate teapots and I am definitely going to say I would prefer not her. Love and hugs and thanks to you Trish xx


    @mosborn11 thank you for all that info that’s great I hadn’t thought of what happens after the first appt I know my grandad had osteoarthritis and had to stop work when he was 58 due to the pain and my Nan on my dads side also had osteoarthritis but I think that was a bit later on in life say 65 I’m just wondering if somehow I’ve inherited their genes my grandad was mums side of the family and my Nan was my dads side of the family. I think I should mention that or have it written down.

    One thing I did think was strange was I did do some notes for the lady I don’t want to see I mentioned my mum had passed very suddenly when I was 41 nothing to do with arthritis it was heart failure and in the letter she sent to my dr she said she’s obviously a nervous woman who hasn’t got over the death of her mum. I literally wrote one line about my mum because I thought maybe it would have some bearing like I know infections can bring on autoimmune conditions and I said that since the death of my mum I’ve suddenly started having shingles very regularly which I have. It’s now down to twice a year but when she passed I had 5 bouts of shingles in the first year. Right I will definitely do a bullet point of things that I’ve had over the last ten years. Thank you everso much for explaining what happens afterwards as well and I will message you to see which hospital you went to once I work out how to message people on here.

    Thank you so much both of you.


    Love and hugs Julie x

  • mosborn11
    mosborn11 Member Posts: 20

    Hi Julie,

    I'm so glad that my comment was helpful to you! It's so frustrating what the doctor wrote down about your mum. I once had a doctor write down that I was 'partially deaf' because I asked him to repeat one thing (I'm not deaf at all and never claimed to be!).

    I would think both your Mum's heart condition and you having shingles so much would be well worth mentioning to the specialist as it has potentially to tell them lots about your health. x

  • Jewels1973
    Jewels1973 Member Posts: 49

    @mosborn11 Youve really been great and oh god what a stupid doctor that could really impact on your other doctors saying something like that. I thought it might be worth mentioning about mums heart condition , her brother had it too, so did her dad but my Auntie doesn’t have it I’ve been checked and I’ve got good oxygen saturation 99 percent but I will certainly write down about my mums side of the family thanks for giving me the heads up on that. You’ve been ace thank you so much. Julie x