I find this blog so helpful and encouraging that I don't know how I'd keep my spirits up now without it. I have just recommended it to a friend in his early 50's who has recently been diagnosed with COPD and whose confidence was very badly affected, & I'm sure he'll benefit as much as I have. So please, can I have some more help, experience & ideas?
My Consultant said on May 30, "I'm going to refer you to the Brompton - see if they have any ideas". Not too encouraging. So I'm wondering a few things.
Does anyone have any experience of the waiting times from referral to appointment? Also, I'm going to have to travel from Gloucester to the hospital, 120 miles or so. I can drive, and I have a 10 mile range scooter with a hoist in the car, so I should be able to get there and back under my own sream, and no doubt my wife will come with me, However, I'm on oxygen - 4 litres a minute for at least 15 hours a day, with additional ambulatory oxygen. The portable tank only lasts about 2 - 21/2 hours on constant supply and I haven't tried it on the "on demand" setting.
Also, what is the Brompton unit like? Any parking nearby? Are appointments routinely an hour or more late like Gloucester Royal Hospital? Is there somewhere in the hospital where I can get something to eat if necessary (I'm type 2 diabetic as well). Can I assume I can get around on my scooter if I'm sent hither and yon for tests as in GRH?
Even to myself I sound like an anxious old woman (I'm actually an anxious old man!) but I find my previous self confidence at travelling round the world expecting to cope with anything that came up has been eroded so I like to be informed and prepared these days.
So folks, does anyone have any information, experience, suggestions, ideas?
Thanks in advance.
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serenityfrank
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I don't have experience of the Brompton Frank, but i can tell you that assuming you are using Heliox liquid oxygen it will last a good 8 hours at 4 lpm on demand. Keep in mind though that if you are in the respiratory section of the hospital they should have LOX there available for you to refill or top up before returning home - even my small local community hospital has this facility so i am sure the Brompton must make it available . I haven't looked yet myself, but i am sure that if you google the Brompton's website there will be info for visitors there giving details of parking, cafeteria's etc. Also you will almost certainly be given parking directions and info regarding which entrance to use for the part of the hospital you are using etc when you receive your actual appointment through the post. It will also have a contact number for any queries or worries you may have. Good luck and good health, Parvati
I have now been to the Brompton four times- twice for outpatient appointments and twice for stays of a few days for tests. First thing to say is that they are leading experts in their field and you will get excellent treatment - it is worth the travel hassle.
Three of the four appointments have been in the Fulham Wing ( Fulham Road), which is only used for outpatients( they do have a five day ward in this wing used just for short stays of 2 - 5 days for tests to be carried out.- closed over the weekend). The pulmonary hypertension catheterisation procedure I went in for ( 2 nights) most recently was in the main block. All staff, in wards and in the clinic have been great. If you need help in getting from place to place for tests they will send you with a porter in a wheelchair. They can also give you a portable oxygen cylinder to use while you are there to save yours for the journey.
Up to now I have travelled up by myself (from Northants). My husband drove me the 15 miles to Bedford - I caught a train from there to St Pancras and then had a taxi from St Pancras to the hospital. Like you I need amulatory oxygen 6 lpm. I did mangage the journey there ok, but three of the four times I have had to return in the afternoon rush hour which I have found quite difficult. On the last two occasions the nurses have suggested that I should be using the hospital transport system. My own doctor has agreed to this and made arrangements for this to happen in the future. I am waiting for an appointment to go in for an overnight stay to begin a new treatment in the next couple of weeks, so will see how well this works out.
Restaurants and snack bars are available and easily reached in both of the wings I have been to. Parking is very limited I think.
I hope this information is helpful - the Brompton website is quite informative.
Hi Frank, I have been under the Brompton since 2008. I only waited four weeks from referral for my first appt but I go to the sarcoidosis clinic. In my opinion and a lot of other patients i've spoken to the Brompton is marvelous. when you get in there everyone is so helpful no matter wht their job is. when you get in you can go onto the hospital oxygen to save yours just ask as soon as you get there. hen you get your appt If you are driving phone and ask for transport and book a parking space they have some in the next road and there is also a few places for blue badge. they are right at the side of the hospital. I haven't seen anyone using a scooter in there but am sure you can. alternatively i'm sure you can arrange for once you park for a porter to come and get you in a chair; in my experience nothing is too much trouble for them. I travel from Merseyside and recently started using the hospital transport, I'm on 6-8lpm continous. before I reached this level my son would take me by train and he would take couple extra bottles of O2 then we would get a taxi from euston. I was then told not to use public transport but unless staying in I still do because it must cost them an awful lot to pick me up and return me home. Once we got train and then hosp picked us up at euston and took us back. There is a snack bar, shop, bisto in the basement of the fulham wing. There is a restaurant in Sydney St wing. Hope this helps, but have a look at their website it has a lot of information on there for patients and feel free to ring them.
Hi Sadie28. You are now the second Brompton patient who has been able to share specific experience with me, and both of you have said how good the staff are at the hospital. Thanks for telling me the things I need to do, which expand on the website information. Frank
I have been going to the Brompton twice a year since 2011 to Lind ward, I have been to my GP who wrote a letter to the Brompton and they send an ambulance car to pick me up and take me home every time, as long as there are only 6 months between appointments you don't need to go back to the GP for another letter, the 1st time I lived in West London now I moved to Norfolk and I still get a car to pick me up sometimes I'm the only passenger other time we may pick up another person. I have spoke to the drivers they carry spare oxygen with them and they travel down as far as Cornwall and up to Scotland to pick people up, so please see you GP before your next visit and ask for transport they may not even know about it, hope this helps. I get a car because 1. I'm on oxygen and 2. I cant climb stairs at the stations 3. I cant walk that far
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