Need some information!: Thanks for letting me join and... - NRAS

NRAS

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Need some information!

Pastels
Pastels

Thanks for letting me join and post my question.....I have had RA for 20 years and over that time have tried many drugs all with side effects. Six months ago my consultant said I had reached the criteria to prescribe a biological, gave me a leaflet and to think about it, she wrote to me and said the drug would be funded. Due to very severe side effects I stopped taking methotrexate. When I was assessed last week by the nurse the offer was withdrawn.

My relationship with my consultant has never been very good at our last consultation she never even sat down but stood behind me and talked when the nurse stood in front of me.

I really feel now I need a new consultant, I live in London and would be prepared to travel. My GP is willing to refer me anywhere in London. Does anyone in London have a consultant they would recommend.

Thank you for taking the time to read....

37 Replies
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I’m so sorry to hear your consultant is so bad. It makes me mad when I hear that others have had bad experiences 🤬. I had a similar experience my consultant worked 1 half day a week as he was due to retire consequently I wasn’t monitored and now my immune system won’t ever recover so haven’t had any treatment for chronic RA for 5 years ! There’s light at the end of this tunnel though now have a new consultant who’s amazing 😃. Sorry don’t live in London but sending you my best wishes that you find a new consultant who looks after you. Sometimes it’s best to see nurse and bypass consultant if they’re unhelpful until you find someone else. Good luck in your quest hope you end up with a good one like I have recently x

Pastels
Pastels in reply to Leics

Thank you so much for your reply!

I’m pleased you have a good consultant now, I’ve got my fingers crossed for a few good recommendations.

The nurse is new and learning, she did tell me her aunt had RA and took herbs!! Was not sure what to do with that information 🤔. The nurse that retired told me to ask for the biological therapy that I should not be scared to try it.....so just when I got into the position to try it was withdrawn.

I’m ok with not having the biological treatment if it’s not clinically advised it’s just that I don’t seem to be able to have the conversation about what happens if my RA rumbles on, and is not treated. Inexperienced nurse and a consultant who won’t consult🙄

Gnarli
Gnarli in reply to Pastels

You couldn't make it up, could you? Fingers crossed for you. Hugs

J

Gnarli
Gnarli in reply to Leics

It sounds like as horror story! I sincerely hope the new meds help you. Hugs

J

Hidden
Hidden

Hi. i am sure someone will help you with suggestions of what hospital to go to from their experience. Were you told why funding was withdrawn? Was your DAS score not over 5.1 when the Nurse re checked it? I think this is really difficult as different people come up with different results. I hope you find a good consultant that you see eye to eye with, in all senses.. You will find lots of support from this site, both factual and kindly.

Pastels
Pastels in reply to Hidden

My consultant asked me to photograph my joints so she could see what they looked like between appointments. The nurse looked and said she could see they were swollen and painful, but the consultant never looked. Unfortunately my joints go up and down and I guess were not bad enough when I was seen.

I don’t know my score or what it’s made up of. If it’s the sad/ smile face I was told to imagine the worst pain ever and score back from that. I always think of child birth and score a 4.

I did say to my consultant I was worried about further deterioration in my right hand joints because I had stopped my methotrexate due to vey severe upset stomach upsets.

My consultant said she was not in the habit of prescribing strong drugs to prevent problems that might never happen. I said I had been swallowing and injecting drugs for 20 years because I was told that if i did not my RA could damage my joint / body.

Gnarli
Gnarli in reply to Pastels

Not in the habit of prescribing strong drugs! She was a rheumatologist and not a cleaner who had wandered in, I suppose? The mind boggles.

J

Pastels
Pastels in reply to Gnarli

That made me laugh out loud!

Shalf
Shalf in reply to Gnarli

Or the village idiot!

Grrr...inexperienced nurses should be supervised! First off I wonder whether you should try again with your own hospital. You could write or ring the patient Liaison service at the hospital (PALS) and say you don't think you were properly assessed for biologics and would like this to be reviewed. If your consultant felt that this was the right next step for you, then push it a bit. And also ask if there are other consultants there you could see.

And as for the comment about "not prescribing for problems that might never happen". For heaven's sake the whole aim of RA treatment is to stop disease progression! What a numpty!

Norisa is right that you need to have a DAS score of over 5.1 and being asked about sad/smiley face is part of this.....so don't be hesitant about exaggerating a bit. The other elements are your blood tests results and the number of tender and swollen joints you have.

I used to go to Homerton Hospital to see Dr Gorman, who I loved to bits - best rheumy I've had. But don't know if she is still there as a few years ago now and she was young and may well have moved onwards and upwards. However it's a bit risky giving and taking recommendations as what might be a great doctor:patient relationship for one person could be miserable for another since we're all different in the way we interact & what we look for in a doctor.

Pastels
Pastels in reply to helixhelix

Thank you so much for your reply.

I think I could write to my consultant and ask to be transferred to someone else at my hospital and then perhaps move Hospital..... at the moment I would settle for a doctor that sat down and engaged !!

Hidden
Hidden in reply to Pastels

Feeling that someone is listening and cares is so important. I hope you find that person!

Depending on which part of London you are in I’m in South-East London and I go to Doctor Coakley at Woolwich hospital the rheumy nurses are all fab! They have one of the best rheumatology units in the South-East. I was only diagnosed last year officially and they are already discussing biologics I can’t fault them. Good luck hope you get a decent Rheumy!

Great to know that you have a good team, I’m in West London and prepared to travel..... I will look at Woolwich Hospital, even if it’s just for a review. I’m feeling that I’m just not been listened to and folk to busy even to sit!

I think you need to start being very grumpy and telling doc you’re not going away and need some answers. I was ignored took invisible to a new level. Had concerns about my shoulder being really painful. Was left for 18 months not being able to use my arm. Then I picked up a coffee and snapped my collarbone. On follow up sat there and refused to move until something was done about it lol. Got a lot of strange looks. Turned out I needed an op surgeon said it was in a terrible state. My advice don’t be nice all the time 🤪👍 start with your GP it shouldn’t be up to you to find a new rheumy and a good one at that.

Don’t know what to say about your treatment!! Thank goodness you have a better team now!

I do feel that to write all my story it would read like War and Peace. My GP did refer me six weeks ago to Charing Cross hospital I have received an appointment in January next year..... she has told me about the RA forums and suggested that I might hear of a good London consultant here and then she would refer me again.

Bon1
Bon1 in reply to Pastels

I’m at Charing Cross: Dr Mackworth Young. He’s lovely and very very experienced. He’s a very kind man although he can look a bit disconcerting in his white coat!

I thoroughly recommend him - but as someone said earlier I couldn’t guarantee that what works well for one person would be the same for the next...

Bon

X

Pastels
Pastels in reply to Bon1

Thank you.....I have a review in Charing Cross hospital in January I don’t know who with, fingers crossed it’s with someone who will sit down at least!

Did have an experience in the past whereby rheumy was in crisis must have been because my appointments were cancelled on average 5-10 a year got so sick of it saw my local MP lol I consider it to be the bad old days about 10 years ago. But one letter from them and no more problems. Maybe if all else fails make a complaint to MP and they’ll sort it out. Bit drastic I know but I’ve never complained or had my appointments cancelled so much since. The odd one but docs are human too (I think) haha. Really wish you luck.

Thank you!!

I will keep my MP in my back pocket for now!!

I think I will write a letter to my consultant, nurse and Pals and see what happens.

Still looking for the best rheumatologist in West London 😬

First thing to say is im I sorry cant suggest anyone as I live in the North East. Just wanted to show support for you and wish you a very speedy solution to a situation you should not be in.

Take care 🙂

Pastels
Pastels in reply to Ruth12345

Thank you so much !

Shalf
Shalf in reply to Ruth12345

Same as Ruth - Sending best of luck from Scotland x

Ruth12345
Ruth12345 in reply to Shalf

Im off to Aviemore tomorrow. I love it there

Shalf
Shalf in reply to Ruth12345

Oh fabulous Ruth! - Come rain or shine it's beautiful up here! Have a lovely time :) xx

Ruth12345
Ruth12345 in reply to Shalf

Many thanks. I love it up there, we go every year. If you live in highlands you are very fortunate.....saying that not sure about the hard winters

Shalf
Shalf in reply to Ruth12345

Yes it's something else in the winter! 😂 My border collies are from Achiltibuie. Fantastic scenery up there if you get the chance to venture further North West. The skies are clear now. Happy holidays! :) X

Ruth12345
Ruth12345 in reply to Shalf

Thank you.

Just need to pack now. Im at the stage where I just want to blink and be there. Very lazy I know.

Take care . 🙂

Shalf
Shalf in reply to Ruth12345

That's a familiar feeling! :)

Haha yeah MP is last ditch attempt when all else fails. Wasn’t one I took lightly, never moan about anything usually even when I should probably like most people living with uncontrolled RA.

Pastels
Pastels in reply to Leics

Yes, I guess it’s tiring anyway....finding the energy to drive it all is hard. I was so cross ....perhaps it will energise me

I live North Kent so don't know about London. I can see it though from the top of our hill but would say it might be worth trying the helpline of NRAS to see if as they have a list of RA consultants and even join a local NRAS group near you may be helpful as then you might get local recommendations.

Thank you for that, I will ring and see if they have a list of consultants....and join!

I had excellent treatment at the rheumatology. Dept at UCH ,London.

My consultant there has now retired, but his team were very good.

In south west London St Georges has a good Rheumy dept .

Pastels
Pastels in reply to AgedCrone

Thank you for that ....I will check the waiting times

My friend’s daughter goes to University College London x

Another for UCL! Thank you 🙏

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