Lungs

[Lovebear1965]

Well I'm in the Royal Brompton in London for 21 days to get my lung issues sorted and help to make life easier ,so far so good only on day 4 mind .we are all in the same boat so it does help we can share and share tips so it's nice have met some great ppl so if anyone out there is not getting good treatment research and as to go to a top hospital, it's worth the travel and scarficesee you may have to make short term .

[Inamoment]

Food is good isn't it? I was in Paul Wood ward for 8 days having tests. The staff were great, the nurses were brilliant, really nice bunch.

[Pam1952]

Pleased that you're finding it a good experience. The very best of luck...I hope that you get some answers.

Take care. Pam XXX

[sassy59]

Pete has been in the Brompton and it is a great place Lovebear. H a never been in that long though so l do wish you well and hope you do get sorted out.

Take care xxxx

[shadow4me]

I haven't even seen a specialist has yet and I'm severe ,Im sure most other chronic illness you would be automatically be referred, But we I am beginning to find out are totally forgotten in the medical world I have only ever seen the practice nurse once a year to be reviewed surely if we were aloud to see a consultant if only to get the proper meds

[shadow4me in reply to shadow4me]

P.S I hope they help and you feel a lot better xx

[Toci in reply to shadow4me]

Do speak to your GP about seeing a consultant.

[pamillia in reply to shadow4me]

Brompton......don't get me started. Check out my page for more. Know everyone's different but the treatment should be the same.

[Inamoment in reply to pamillia]

The lady who was organising my tests was having some difficulty getting me booked in for everything, particularly the MRI as they were busy. She was clearly doing all she could so I just was patient.

[pamillia in reply to Inamoment]

I had tests l knew nothing about, wrong timed tests, and a complete mess. so l spent more time trying to get the tests done then needed. if they know u are going in for tests they should get them sorted correctly before hand. Not sure what ward u are on. But l have been wanting an answer to what l have for 5 yrs nearly and still no joy. Even the lung function test and clinic dates don't tie up most of the time and l find myself phoning Brompton to get sorted so l only have to do one day travel. The consultant l see a lady, says contact her sec as she gets annoyed as she has no test results when l see her at times. Her sec however, says its down to appointments dept. Yet l can phone the dept concerned and explain and they usual try and get it for the same day as consultant. Otherwords l am doing her job. honestly, they are not organised and if u have read my site will must likely going by your reply understand me.

hope ur get the tests sorted.

[Lovebear1965 in reply to pamillia]

Well all I can say I always have all appt on one day as we travel from Eastbourne, and they have been fantastic to me and my husband so I sorry you feel the way you do but it's not typical of the Brompton

[Hidden]

Have you got a diagnosis yet, lovebear? Which ward are you on? I've had a few stays on Lind, a couple of 3week ones on Foulis (my favourite, best facilities!) and a short stay on Victoria. The staff everywhere are so kind & knowledgeable & the research second to none. As Inamoment says, the food's good too, much of it sourced locally from farms in Kent & Sussex (heard that on a radio programme.) I hope your stay is beneficial & you get a good treatment plan to keep you as well as possible.

[undine]

Am very pleased thing are working out for you. But is does seem to be a lottery. I live in Cornwall and the last time I saw a consultant she spent most of the time telling me about treatments that for one reason or another I would not be able to have, which left me more depressed than before I went in fact rather wished I had not gone at all. Treatment for the valves would have meant going to Bristol - quite a trek for me - for all the preliminary tests and actual operation plus returning there for after care - lung transplant more or less the same but travel this time to London even worse. As I am now down to 19% lung function and do not have a family to support me she decided I would probably not be well enough anyway to withstand all the travelling so then dismissed both options, which I felt for the same reasons I would have to anyway. Had I lived much nearer to either location or they were available within say a 50 mile radius of my home I may have considered one or both of them but 100's of miles makes it just impossible which is a shame have heard some very good results can be had by both treatments oh well never mind at least I wiIl die where I want to be in my beloved Cornwall back to my roots so to speak. My best wishes to you and hope all goes well. Take care xxx

[flo1]

Undine..I travel from South West Devon to Royal Brompton , I make the apt and its sorted out for a time and space to suit me, I also see a Consultant annually at the Royal Free in Hampstead which is not as convenient as there is no flexibility in the Consultant who is only around to patients even those travelling a great distance until 12pm..frankly I am now looking to switch to RB as I can be in London in 3...4 hours even car travel..and so I am not forced to do a overnight as I am with RF..that saves me some 'cash' I started at the Brompton last year as I am being assessed for the CELEB trial ..lung volume reduction, I am informed good candidate for Valves..they outlined a week up there pre the insertion, I am thinking of going forward Spring, Summer 2018, as its sounds a great option! Regarding Lung Transplantation can you not get this done closer to home? I know Torbay do them, I am not near that point as yet but I am very severely damaged something nothing can fix only intervention ..which is why I looked toward the trail at RB.. The administration is shocking in all 3 hospitals but the Brompton for me has proved to be the best of the bunch I am seen at Torbay, Brompton and Royal Free currently... I think the NHS needs to look at the private enterprise zone of appointment makers (as informed they are separate) these days and reassess. ..My experience on all of them if you live in the beauty spots you have no option but to travel for all and every appointment of significance as the very best Hosptials are all miles away..and its a total drag but its worth the treatment received , far superior to the locals.