Advice needed about consultants/hospitals please

Hi everyone

I've been looking at the forums for the last few weeks and they've been really helpful - it's so nice to know that I'm not on my own with problems I've encountered with drs during this latest asthma 'blip'.

I've been off work now for 12 wks on a variety of meds including pred which I have now stopped my dr is relunctant to put me back on it even though it does make me better and more able to function. I'm now on 400/12 symbicort 4 times a day and montelukast and lots of ventolin! I haven't really had any really bad asthma attacks but I've had many sofa days! My peak flow is normally 550 and I hadn't had to take ventolin for over a year before this latest problem - it all started with a cold and a dr that didn't believe me when I said my asthma was deteriorating because I didn't have a wheeze (which I never do unless I'm really bad) and my peak flow had 'only' dropped to 450.

My peak flow is currently at 370-420 but when I had been taking the pred I was up to 470 and starting to feel 'normal'. I do have some good days and on them I can go out and wander slowly round the shops for a couple of hours as long as I have breaks.

Anyway the respiritory dr at my surgery has said he doesn't know what to do with me now - he's going to try a blood test to see if I'm allergic to anything and then refer me to a consultant if the blood tests don't show anything.

I think I could choose to be referred to James Cook hospital in Middlesborough, Scarborough hospital or possibly even York or Newcastle - has anyone had any recent experience of those hospitals?

The reason I'm asking is that I had a bad experience with a consultant in James Cook a few years ago who insisted that my best peak flow couldn't be correct and that as I wasn't far off the predicted peak flow of 460 for my age there wasn't anything wrong with me except hyperventilation and panic attacks! I got through that time with the support of my gp and asthma uk helpline who suggested different inhalers etc and the consultant had to admit he was wrong after my peak flow went up to 550 again in the end. I'm obviously reluctant to go back to James Cook in case I get this consultant again.

I'd be really grateful if you could help with advice of good hospitals/consultants.

Thanks

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i dont really know anything about any of these hospitals, which would you be taken to if you were admitted in an emergency? in my experience its nice if your consultant is at that hospital as then they can see when A&E did for you, but unfortunately i think im having to be reffered on from my 'usual' as they are running out of options for me! it may also be worth looking at wether any of them have a difficult asthma clinic as some hospitals can offer more treatments than others (for example mine doesnt seem to do xolair which they think i might need)

its also worth pointing out that you can change consultants as long as there is another one who does resp. you can just ask to change - so you wouldn't be stuck with the bad one. although i honestly cannot BELIEVE he managed to get to a resp consultant without believing how good your PF can be. im predicted about 450 and my best is 600, even people like paramedics (who presumably have less experience of resp medicine than a resp consultant) are perfectly aware that predicted values should only ever be used when a personal best is unknown, because they vary so greatly!

i can see the benefit of stopping pred, but its a shame when it helps you! this is something a consultant will look at. a lot of people do take pred long term, but it does cause a lot of problems. hopefully they'll find an alternative but if its the only thing that helps you then they will do it, so dont worry hope you get through this rough patch soon! its awful when you feel rubbish. this new cold weather we are starting to get is gonna cause havoc (just in time for me to go back to uni! joy!)

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hi maccy..

ive never had experience with James Cook, but have heard not nice things! Im personally at North Tees lung health clinic and really cant fault them.. ive now been sent to the Freemans at newcastle because mines completly uncontrolled complex asthma, nothing we do iscontrolling it..i can vouch for the freemas as well, they really are brilliant, and explaineverything in detail.. never rushed to get you in and out..

feel free to get in touch if i can help

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Thank you both for your support and advice -

Soph - looking back I find it difficult to believe that a consultant could be so uninformed about basic asthma but that was what I had faced through numerous visits to drs as well so I just thought that it was the norm! I know why they don't want me to take the pred but as you say it's rubbish feeling this bad - I guess I'm finding it hard to believe my asthma's so unstable at the mo. I've had a look at the hospitals and what they do resp wise - I hadn't thought of doing that - James Cook don't really go into detail as to what they do so I guess that confirms what I had been thinking about them

Good luck back at uni - hope the weather doesn't get as bad as predicted!

Sassy - it's good to hear some good experiences - I feel a lot of mine are negative and that I'm often having to fight to be listened to and not fobbed off. Apparently I 'present' well so it appears I'm better than I am - I don't think they always get a good idea how you are when you're only in talking to the dr for 5 mins or so. Hope Newcastle manage to help you.