Difficult consultant

Hi..... I've been at the Brompton for the last two years after referral from my local hospital resp consultant ..... I must say the Brompton is very good...

I'd grab the chance of RBH if I were you lejaya. Why go to UCL when one of the best chest hospitals in the world is on your doorstep? There's a "difficult asthma" specialist called Andrew Menzies-Gow there who's excellent.

I was referred to the Royal Brompton after constant admissions to hosp normally going straight into resuss. I was in hosp from January to June on and off for a week each time always triggered by colds which rapidly went to my chest and led to severe asthma with 48hrs.

I spent 4 or 5, days as an inpatient at the Brompton while they carried out tests and diagnosis.

They reviewed my medication and I was offered a xolair trial

My life was turned around and I have not been in resuss in 2 years. I have had to go to hosp for nebs and the Brompton kept me in overnight once but my asthma is now really well controlled compared to how I was in 2014.

Please take up the offer to be referred to the Brompton you may be as lucky as me and get your life back - I cannot praise them highly enough - that's from the consultants, nurses to support staff.

Mike

Although you may be quite right about the cause of your flare ups being from chest infections, your consultant needs to find out why you are so vulnerable to them. He doesn't think you are being 'over-treated' - he thinks there may be a different underlying cause to your problems and wants to find out what it is. However, in my experience, consultants have a rotten bedside manner and it is often the nurse who works with the consultant who can explain it all to you in a more thoughtful way.

I can see why you feel so fed up about all this, as you seem to be getting nowhere, but these people really do know what they are talking about, so you have to trust them. No-one has a miracle cure, I'm afraid.

Wherever you go, much of medicine is about trying something to see if it works and trying another route if it doesn't. As others have said here, the UK has some of the best doctors and treatments in the world, so if you are offered the chance to go the the Brompton, then go.

Best of luck and have a very happy New year!

I thought exactly the same but nothing ventured/nothing gained Lejaya ... I live 50miles from the Brompton and have to go there once a month by train !!

But they have managed to stabilise me and I'm now living a relatively normal life after 10 infections in 12 months..... 2yrs ago and visiting A/E many times !!

I'd go with the flow, you don't know until you've tried !!

Good luck

Mark

Hi Lejaya

Don't know if it will help you in your decision making at all, but I've recently come across a bang up to date extremely informative web article on Bronchiectasis, that's significantly more comprehensive than anything else I've ever read on the subject (and I'm a heavy researcher). The info contained may sway your decision as to what additional help may be possible via whatever Hospital you choose. Good Luck,

gponline.com/bronchiectasis...

PS On the subject of 'Asthma' I've concluded the term is practically obsolete and should be substituted by the more generic 'Respiratory Illness'. I say this because NICE have been trying since 2015 to agree a definition for Asthma and still don't seem to have made their mind up.

I know it's hard I too have an atypical type of asthma with allergic features ( fun) I too was referred to a local tertiary centre when staff in local team changed. It was great to get a senior second opinion and although I got no new treatment it did reassure we were doing what we could. I have also had contact with them when they become aware of new/ changed treatments that might help.

I'd go for it. Also asthma is a disability under DDA so I'd ask work what they are doing to help you- reasonable adjustments? Are you in a union? I got time off to go for referral/ admission as a solution would be beneficial to all.

thanks for all the replys, I'm glad you have all had good experiences with the Brompton and I think it would be good be try a specialist hospital as I don't think Kingston have much interest in asthma and bronchiectasis.

I just need to get over my fear of being fobbed off as it has happened before

Lejaya

Hi lejaya

Just wanted to second what QuietChest said in reference to your warning at work - I went through something similar with my (now ex) employer making a fuss about time off with asthma. If you have asthma you can tell your employer you consider it should be classed under the Equality Act (which superseded the DDA) - if you have asthma that has a long-term substantive impact on your life as yours obviously does, this should give you some extra protection at work as many employers still class asthma absences in the same way they do if someone has a few days off with a cold or a stomach bug, which really is unfair as it's not the same thing. You can ask for your asthma absences to be classed as 'reasonable adjustments' as part of keeping you at work, see more here:

asthma.org.uk/advice/living...

I've been to the Royal Brompton and they weren't much help to be honest. The consultant said I'm on maximum treatment Possible and they couldn't do anything else. They wanted to keep me in for 4 days for the protocall but I was at university at the time and couldn't attend due to exams. I'm now under the Brittle asthma unit in Birmingham at heartlands hospital. Consultant there is very good and I'm looked after by my local gps, local hospital and the Brompton once a year. I have type 1 atopic Brittle asthma and I'm allergic to so many things which is why they've put me in xolair and I've seen a massive improvement. But like you I also suffer from very poor immunity and have frequent bouts of tonsillitis, Quincy and chest infections so they are trialling me on a new drug that's come out this year to reduce the white cell blood count to reduce infection that makes my asthma flare up. Give everyone a shot - it took me 3 years and two intubations to finally get any help so take advantage of it and see everyone you can.