How do you get a good rheumtologist?

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Frustrated
Frustrated Member Posts: 13
edited 17. Aug 2014, 09:50 in Living with Arthritis archive
I live in North West England and so far my experience of rheumatologists has been dire. I went to a consultant from Blackpool first - well I say consultant and it was a pleasant enough woman but a houseman with little experience and no access to scanning facilities or anything because clinics were running over 3 hours late.
So I went private (paid for by my mum) for one appointment to see a specialist from Wrightington (a specialist hospital for the area). He promised all sorts from the NHS (and had internal awards from the hospital) - splints, physio, pain relief etc.
Then I went to see him NHS. Couldn't remember anything about me. Did lots of painful prodding, scans and usual indignities and claimed he couldn't see much wrong with me. Initial promises of referral to surgeon for my wrist joint completely gone never happened, claimed not to be able to see problems in my left foot which now a year later is definitely merrily burning cartilage away.
How do I get referred to someone who gives a damn about trying to help a patient rather than just mumbles about taking paracetamol and you're not bad enough for biologics yet as if those are the only two options?

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  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
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    What meds are you on? Most of us start with DMARDs and the NICE guidelines state you have to try those before biologics. Steroids? Anti-inflamatories? They might give you some relief. Try your GP? I'm putting question marks because I imagine you have already tried these things.

    All I can add is if you are in the north west then try for a referral to Manchester Royal, that is a teaching hospital and the rheumatology department is quality. Failing that, google rheumatologist with a specialist knowledge of whatever your problems are (if your diagnosis has got that far) and try and see them? I've had some rubbish rheumatologists, that was how I found the really good ones for me. Hope that helps
    Hey little fighter, things will get brighter
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Pain makes us all frustrated and anxious for something – at times, virtually anything – to happen right now :) This is a recipe for disaster with arthritis as stress literally makes it all worse and inhibits our ability to deal with said pain.

    Where can you find a good rheumatologist? Well, you've tried Blackpool which, I believe, is a teaching hospital, and they usually attract the best docs. And you tried Wrightington, one of the top musculo-skeletal hospitals in the country, and found that wanting too. So I do wonder how you would define 'a good rheumatologist'. Surely not one who would jump in with DMARDS despite having no hard evidence to go on that they were going to make a difference? Perhaps the feeling is that you have OA rather than an auto-immune form of arthritis Very few patients are sent away by rheumatologists with a diagnosis but no disease modifying meds.

    If scans and x-rays weren't able to be done due to time constraints, what evidence do you have that your foot is 'merrily burning cartilage away'? And isn't it a tad unreasonable to expect a consultant to remember every patient he sees :o How many must he see in just one day?

    I have no doubt that you're in a lot of pain, frustrated. There are many forms of arthritis and every single one is painful, distressing and limiting but that is something we have to live with and learn to deal with. (Have you tried a Pain management Clinic?) Perhaps, if you go back to Blackpool, this time they'll be able to do a scan and that might give you a bit more knowledge and take you a bit further on. Or, you could return to Wrightington and ask why it was felt unhelpful to refer you to a wrist surgeon or for 'splints, physio, pain relief etc'. But, getting angry with consultants and rejecting them as soon as things don't go as you'd wish, is unlikely to endear you to any of them.

    (I've read your post on the Benefits forum and I see you're also angry about the Blue Badge system. I'll try to reply to that later but I'm a bit pushed for time right now.)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Frustrated
    Frustrated Member Posts: 13
    edited 30. Nov -1, 00:00
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    Thanks for your comments. Blackpool just escaped special measures for high death rates and isn't well regarded except for the Cardiac department. My complaint with the Wrightington consultant is not really that he doesn't remember me - he doesn't consult his notes either, he mentioned splints, surgery and said he was referring but just has not done it. He promises things and they never happen. He treats it as two options - paracetamol or biologics. I'm the last person to be wanting to take chemo drugs even in lower doses with no good reason (a point he seems to ignore when I try to talk to him, not that he listens) but it just seems like he doesn't actually do anything else but the two options. Currently I'm on nothing and getting no help. I'm on my own so getting to hospital is enough of a nightmare without it all being for absolutely nothing. There's no occupational health style help, no information on surgical options, nothing except go away. This week has really got me down as my foot has felt like it's got a hot iron pressed against it = just as happened with my wrist which they can see all the cartilage has gone on - and I'm really struggling to do anything at all and it's getting me really down. I'm only in my early 40's and my wrist didn't get any particular strain so why would it be OA? And if it's OA why have I got problems in my back, my knees, my feet, both hands and wrists.? (Not that I wouldn't be delighted if that's al it was). My sister has had RA since 17 and I know it's not exactly like she had.
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Right, let's start at the end :wink: “I'm only in my early 40's and my wrist didn't get any particular strain so why would it be OA? And if it's OA why have I got problems in my back, my knees, my feet, both hands and wrists.?” I guess the only answer to that is the very hard, why not? It happens. We don't know why. It just does and age is nowhere near as relevant as some GPs believe.

    However, your sister has RA and there can be a genetic factor in auto-immune forms of arthritis. (Do any other family members have auto-immune diseases? I presume your rheumatologist(s) are aware of this.) If you do have an auto-immune form of arthritis then you do need the disease modifying meds. I'm amazed that your rheumatologist has said it's biologics or paracetamol. There are people on here who'd give their eye teeth for biologics but normally one has to fail on three DMARDS before they will be prescribed.

    What exactly is your diagnosis? Is it an auto-immune form or OA? I get the impression you think it's the former but the rheumatologists think the latter.

    As for Occupational Health, you can easily self-refer. Just go to your local government website and look up Adult Social Care. There will be a number to ring. Most of us find them very helpful and I hope they can do something for you too.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    There are around 200 kinds of auto-immune arthritis, it isn't just a matter of rheumatoid and osteo (as those without it seem to think). Rheumatologists do not deal with osteo because that does not fall in their remit, in the same way that GPs don't deal with auto-immune. Rheumatologists do not have a magic diagnostic wand just because they are rheumatologists - I should know, my accurate diagnosis took years.

    It is a sad truth that anyone of any age can start arthritis - reading the My Child board on here is proof of that. People associate it with age (or rather, they associate osteo with age) but that is entirely false. I began with an auto-immune kind, aged 37, which went unrecognised as such for five years, so by the time I began the meds it was too little too late. I am now 55, and have a foot in both arthritic camps, so I oscillate gently between my rheumatologist and my GP. A useful rule of thumb is to always be polite and show some interest in your docs and nurses as human beings, especially when they are wielding needles. :wink:

    I hope you can find someone to help you soon but be prepared for a time of trial and error on the meds; I had to fail four DMARDs before I was put forward for the biologics (they cost a bomb). My bloods are superb, it's just the body that's wrecked. :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
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    I wish I knew the answer to your question.

    I used to have an excellent Rheumatolgist but was forced to move to another hospital. Since then everyone I have seen has been hopeless. Sometimes I wonder if the system is broken or not, the services for Arthritis as my local hospital seem to be over crowded and running at breaking point. Maybe that's why some doctors just simply don't have the time for some things? who knows I wish you luck in finding someone good.