I am going to scream

Just had another check at Treliske and really need some advice from anyone else local.

To say the appt didn't go well is an understatement, I haven't felt so stressed from seeing a consultant before, so hence the title of this post.

The one and only hospital down here in sleepy old Cornwall has lost its main consultant from the rheumy team and various other members of staff so, as a dept, they are obviously a little 'stretched'.

I work 5 days a week as I run my own business, therefore trying to get to any appt is always hard work, when I then wait for over an hour and half because they are running late, my frustration levels rise (patience not a strong suit lol), finally getting in to see a different consultant than before, to be told twice that because I am over 50 and therefore can expect 'aches and pains' and this is 'normal'.

The new consultant will not change my medication (MTX, hydrocloroquin) as I am 'moving well' (????) and have no obvious joint swelling (steroid injection less than a month ago when I was doing an impression of Frankenstein's monster/hunchback of Notre-dam), and she 'sees no benefit'.

Apart from offering me anti depressants (no thank you, been there, done that, didn't like the t shirt!) her advice was to 'see you at your next appt'.

I feel I wasn't listened too, patronised ....................these are 30mg tablets - if you need to, you can take 60mg - that's 2 tablets............... (although in retrospect my response at this point of 'No shit, Sherlock' probably wasn't helpful) and the whole couple of hours was a waste of time - mine and hers!

So really the whole point of this rant (and thank you for reading so far) is what do I do now? I have absolutely no faith in the rheumy dept as a whole, and my next nearest hospital is a good hour and half's drive away. Do I have any options or do I just have to continue banging my head against this particular wall?


6 Replies

  • As someone who lives in a more remote place than Cornwall I see the one rheumy who comes here every two months (I see him aprox every six months). I know that other island groups are worse off than us because they only have a GP with special interest apparently so I do count myself as lucky to have this rheumy - even though we clash rather because I'm too much the expert patient for his liking!

    I don't think an hour and a half's drive is that much to put up with to get to see a rheumy you like and respect rather than different people each time. Would you be assured of this or is it a gamble whom you see there too?

    I did ask my GP to refer me for a second opinion but was quite political in that I approached my own rheumy through my GP and asked him if he could please recommend an expert in connective tissue diseases for this one off appointment - rather than lodging a formal complaint about him which neither my GP nor I thought would be a good idea .

    Anyhow he did suggest one of his colleagues with apparently good will (I see my own rheumy again soon so will find out if he is going to sulk about this or not!). I had to fly to the big hospital for this second opinion and it took a whole very long day to get there and back. I did bear in mind that they were colleagues and Scotland is a small place where rheumatology is concerned and I'm sure this applies equally to Cornwall. I would happily travel all day to see this same chap as I thought he was wonderful but as I can't afford to go privately and my rheumy is the only one the NHS will send me to this isn't an option. I'm lucky that it's always the same man so far at least I know.

    As a self-employed person myself I have found it much easier to get on with these medical people - even if I privately doubt their credibility or professionalism - than to cross swords. I'm realistic enough to know that my reputation as a patient will influence the way I'm treated/ believed or not believed - you need to be a bit strategic to get what you want and need as a patient I feel. This isn't right and it isn't how we should be made to feel but RD is a long term condition and it's important to be realistic when resources are scarce and the NHS is under severe pressure.

    I do hope this doesn't sound patronising Pawsed. I know exactly how it feels to be fobbed off and not listened to and it is absolutely horrible but I have learned the hard way that the only way to make things better for myself is to try and be strategic and use every ounce of charm I can muster so these very well paid people are working for you - as I would if dealing with a client or collaborating with a partner business.

  • Yes, lots of people are in this position. I have no transport and have to struggle on 3 buses across a busy city, crossing busy roads just to get told "you could have got a taxi" I'm a pensioner. Taxis are beyond my means.

  • Start by giving feedback to your NHS via PALS - about how you didn't feel listened to, about having a new consultant who clearly hadn't read your notes and didn't know you, and about the real lack of choice you have as a patient in that particular area given that they no longer have enough rheumatologists. Also, summarise what you have tried and the results to date (in one A4 page maximum of bullet points- rheumies have very short attention spans) and send a copy of that to the rheumatologist you saw, with a covering letter stating that you don't feel that the appointment was very useful, and could he suggest something else based on what you have already tried.

    Consider asking your GP about referring you to a different centre - OK it may be a lot further away, but if you end up having to wait 1.5 hours anyway at your local, how much longer is it going to be realistically? If you have to take a whole day off work, but you get a whole lot better service, it could be worth it in the long run.

    Consider seeing a private rheumatologist. i wouldn't normally recommend this, but if its just a matter of tweaking your meds, or getting some good advice that your GP would act on (check with GP first about whether they would prescribe and monitor different DMARDs if a private rheumatologist recommended them), then again, it may be worth it as an interim solution. At least with private appointments they generally run really close to time and you have more choice in appointment times.

  • I agree, I would make a formal complain to PALS. Copy your consultant a letter too. Stating that your discussion about you health or lack of it was not given full consideration.

    It is important that as a patient you need compliance from your consultant. They expect us as patients to comply so the too should show mutual respect.

    In future if you do decide to see this doctor again make an appt and the start or end of Clinic to suit your working conditions. Therefore your time will be better utilize.

    If you feel you need or want a different opinion seek advice from your GP.

    As with all chronic diseases we need to feel secure with the people who look after us and prescribe our RA care and medication.

    Be guided by your gut instincts.

    Your care is personal to you. Make sure you get the best you can whatever the circumstances.

  • well I think you are doing great to hold down a job and live in such a great place thing could be a lot worse and they are a lot of people having it hard, think positive and try not to stress life is to short hope thing get better for you.

  • Thank you for your thoughts. Sometimes I wonder if I should be trying to run my own business, it is stressful, but such fun (I run a fancy dress hire company) nothing earth shattering or life changing but how many other places are you likely to have Darth Vader and a Jedi having a light sabre fight in the day, film companies in and out, amdram groups not to mention all the parties that go on.

    I am always conscious that there are others far worse off than me, on my better days there is nothing obviously wrong, but that has taken an awful lot of medication and educating myself to tackle things differently.

    Take care


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