Severe/Brittle Asthma Units

I live in Wiltshire and currently get treated by Heartlands however finding it to much travelling there so was going to see where the nearest specilist unit is. I know there is one in Southmead Bristol but wrong side of the county for me. Anyone know of any other units around?

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Hi Bizkid,

Have you checked with your GP/asthma nurse? I was referred to a specialist in the summer and with the new 'choose and book' system a whole list comes up. Funnily enough, i chose Southmead although i have to catch 3 buses to get there as my asthma nurse/nurse practitioner pointed it out to me and seemed like a good idea as it's a 'Difficult Asthma Clinic.'

Jac

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Hi Bizkid

I would not look at changing centres just when you have been in and waiting for results. I would wait tll they have got your medication and condition settled. Over wise you will have to start from the beginning all over again.

Plumie

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we live in Somerset and my Son is under Southampton, he's 10.iIm brittle too but still under local specialist at mo, not sure where I'll be referred.

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Bizkid...

heartlands is one of the few very exceptional difficult asthma centres. You would pushed to find one as good as them without the travel. the next one closest to you would probably be southampton. it is a real hassel having to travel far for the treatment and to see a specialist but their knowledge is worth its weight in gold. other hospitals may ahve very good resp centres but wont be nearly as specialist as heartlands or others such as RBH etc. I would stick with it. if you are having trouble with the traveling look into patient transport.

If scotland didnt have the con i see now i wouldnt think twice about travelling somewhere that did have someone just to be able to have them see me and their knowldeg in the hope of getting my life back.

i would stick with them and see what they say fiorst before you start moving about.

olive

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I think Plumie is right on this one, the only other place is the Royal Brompton Hospital, London, and where ever you go, they do prefer to do their own tests. I did the Heartlands in 1996 and it was one of the first places, well to be exact Professor Jon Ayres (Google him) who recognised the existence of Brittle Asthma. Stick with them, I travelled for years to RBH 4 hours each way, my day started at 5 am and finished at 9 pm. And I still think it was worth it.

Talk to us when the travelling and long trips get you down, that is what we are here for.

Cheers katina

[yaf_user681_23350]

Think the others are right, It's probably best to stay put unless your really not happy.If it aint broke don't fix it.I know it's a wind up traveling, we are 2 hours away from Southampton but my parents live in the New Forest.We will be going down next Wednesday ready for a whole day of tests on Thursday, Matty finds it very tiring especially as he is still ill at the mo.

Good luck

kate

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same as the others, if I was you I would stick with them. Heartlands has a fab reputation and like others I went there when it was the only one in the UK under Prof Ayres and used to travel 200 miles each way to get there!

Found it a very worthwhile journey though as they were the only place to diagnose and treat me correctly and it worked wonders

Snowy

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I'm in Glasgow.... Under prof Thomson . Difficult asthma clinc. They do more research and trial treatment.

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I go to the London chest hospital and see a prof barnes. They have a difficult asthma clinic. This is my second referral previously went to the rbh in 2005. I'd recommend either as they are both excellent hospitals with top doctors.

As others have said I think you should stick with heartlands and enquire about transport if thats the only problem.

Clare

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Me driving there isnt a problem... so transport itself isnt much of a problem its the time is takes and my consulant wants me up there as soon as I start feeling unwell this is a probelm as it takes 4 hours to get there.... and sthis costs money my HC2 has just run out so longer get travelling expenses and for a 10 min appointment gets frustrating.

I also have lost confidence in the them not in there ability but its a long story and think that they arent taking me as seriously as they havent seen me unwell and unlikely to as I go down hill very quickly and most likely unable to survive the jouney up so he can see me unwell.

Southmead is about an hours drive away and have been a patient there and southapton is also about an hour away and I am applying to uni there so the chance of me being a patient there are high. I am not about to rush and change consutants but looking into other options but nothing will be decided until I have discussed things with heartlands at my next appointment and my GP.

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a thought - if the doctor wants to see you ill then when you feel ill can you not ring the heartlands asthma ward and request they send an ambulance for you so that they can come and get you and take you straight to them? I am sure if they want you when you are unwell that is the safest way to do it?

Maybe you should question how they want you to get to them, i do not think they have thought this through at all, i think they may have said it more as a passing comment. I would question it monday!

Plumie

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hi Bizkid, I agree with others who have posted here, it really does seem to me that sticking with Heartlands is for the best as they have been assessing you for quite a while now and have been building up a picture about what is going on with you. Going to another tertiary referral centre will mean repeating the same tests and procedures only to find out the same things again which will only delay any changes to your treatment and you getting better. As I understand, though I may be incorrect; Heartlands is a nationally recognised Asthma centre like The Royal Brompton in London are are highly specialised and equipped to deal with the most difficult of Asthma patients so it really is for your benefit to carry on with them, I've heard brilliant things about Heartlands and I'd go there if my other centre and my local felt I'd be better off there.

Also I agree with Plumie, inpatient transfers can be arranged - I've known of patients who have been transferred from ITU in their local hospital to Heartlands for investigation.

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I think the send an ambulance when unwell would get me very far! I go down hill realy quickly (have Brittle type 1 tendiencies) so not likely to get very far up the motoway! and even on blue flashy lights would take at least 2 hours! I also get better quickly so once a inpatient transfer arranged likely to be back to my normal self!

I am going to mention the travelling when I see him next.... unfortunalty my nearest hospital wont touch me they sort me out and ship me out! Thats why thinking something closure to home might be a better idea as more likely to be able to get to them when unwell.

Planning on staying with Heartlands for the near future just thinking more long term!

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Southhampton has a good unit and they do a lot of reserch if not the Royal Brompton hope that helps

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Sorry that you're feeling a little disatisfied with the care at Heartlands, Bizkid.

I have to say, for me they have never been anything but excellent. My appointments are usually significantly longer than the 10 minutes you describe - and I don't think it can be just me as he is always running so far behind schedule that I know he must give all his patients the time they need!

One thing that has been difficult is that the wards are always so full that I have struggled to get a bed. In general I don't ask to be transferred from my local to Heartlands if ill, but rahter just have them liaise on the phone, but the couple of times that I have been moved it has taken several days, or even a week, to find a bed on the wards.

I think I do understand a little of where you're coming from: when my chest was relatively stable I did sometimes feel as though I wasn't taken as seriously as I might have been, and that perhaps they weren't as proactive in looking to improve things just because objectively things seemed good, even if subjectively they didn't feel that way. However, this seems a fair trade off as, now that I'm currently very unstable, I'm seeing him every 4-6 weeks, and I really can't fault the care and attention I'm being given at hte moment.

I used to travel from North Yorkshire to get to appointments, but fortunately it is now only 1.5 hours.

Have you tried talking to Julie or one of the other asthma nurses about your concerns?

Hope things improve,

xx

H