Royal Brompton, & other questions

Hi Folks,

Happy new year to everyone.

I wont bore regular readers with my history, just say Ex TB-Pneumonia/Broken Ribs/ Chronic Pain Ribs/Failed Surgery=Pneumothorax /Emphysema/ COPD/ Pleurisy /Double Pneumonia, Hospital stay 1 mth. Loads of tests since, outlook not good, disease gone too far to treat with Lung Reduction , not suitable for lung transplant as terribly unfit due to right side constant pain, and so on.Terribly low LF, very low indeed, think 25% and go lower, for a full rundown Im sure you can look at my recent posts should you be very bored:)

I saw my regular area Lung Specialist on Dec 12, who had been very very down beat about any surgery options, and that probably all that can be done now is to make my life as good as it can be for the next 5 years. (More and more results point to only a few life years left.)

However, after some apparently worrying CRT test results, my specialist said he had got in touch with the London Doctor and had arranged for a 'Fast ' appointment with him.

This was in the week between Christmas and the N Year,

The referral Letter I assume went out immediately,(I got a copy on the 29th) must have been the 27th or 28th, and I assumed it would be the usual 6 months wait to see a specialist, as it has always been down here on the coast.

I was telephoned on Wednesday,1st day back after NY breaks, and told I had an emergency appointment for next week.

Im due to have a repeat set of LF tests, CRT test, and then speak to a Dr N Hopkinson at Royal Brompton hospital.

Does anyone know anything about this Specialist? Dr N Hopkinson .

Also the hospital? is it a friendly place? has anyone been there? has anyone seen this Doc? Will I struggle to get from Victoria to the Hospital. Has anyone traveled up on the Brighton=> London Victoria route?

My Appointment is for 10.45, Im taking a train that arrives at Victoria at 10am, giving me 45 mins to push my walker up the steps and find a cab, and then get there, is this enough?

Is this less than a week wait for appointment the usual speed for a referral to this sort of thing? Im winding myself up all day, and my dear wife, saying its so fast there must be something horrid, and then saying its really fast, maybe because I fill one of their test specs, and so on, all day long.

Im relatively young, and to hear from my own area specialist that there was no chance of any surgery as I had gone too far, and then get this out of the blue, It makes so many thoughts go round my head.

Amway, forgive my usual ramble, you guys and my wife are the only real outlet we have for all my worries, and I try and keep happy and hopeful for my wife's sake.

Main worries are whats the transport like, do I need to leave much longer? And does anyone know the Doc? Any advice to make it an easier day?

Thanks in advance

Cate:)

18 Replies

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  • Sorry I can't help but I hope it's good news and the best of luck .

  • I can't help with info, try to be positive, this can only be to your benefit ... it can't cause you to get worse and may hold out some new opportunity and hope. At worst you will be where you are now, possibly with more news/info (could be good ... might be bad, but information never killed anyone).

    I wish you all the best, try to think positively and allow plenty of travel time so you don't get stressed or rushed, plan to be early and take a book to read .... you are bound to be kept waiting anyway so expect it. Keep calm and carry on it one of my mottos (often easier said than done)

    Good luck

    Bolilly (Liz)

  • The AA route planner reckons it is 1.6 miles from Victoria to Royal Brompton & takes 6 minutes but I guess that is by car. I will be going in a weeks time too but travelling from the North. All comments I have read on this site about Royal Brompton are very positive so I think you are going to the best place possible. Best of luck and let us know how it goes.

  • Hi Cate

    So glad you have a very proactive specialist who is obviously doing his best for you. The Royal Brompton is the largest heart and lung centre in the UK and has an excellent reputaion. I know quite a few bronchiectatics who are under their care, but the consultants they see are specialists in cystic fibrosis and therefore I have not heart of the consultant you are to see. However, I have put up a link and he appears quite impressive. You will be in good hands.

    Please let us know how you get on Cate.

    Love C xxx

  • Sorry forgot to put up the link - it's my age Cate!!!!!!!!!!

    rbht.nhs.uk/healthprofessio...

  • Thanks for the kind words Liz, and a nod of thanks to the IPad:)

    Thanks also Mapal, thats exactly what I had hoped to read, Ive left 45 mins from arrival at Victoria, so hopefully will be able to get to the hospital with a good 20-30 mins to spare &Of course ill report back, with hopefully the same comments youve read :)

    Take care and thanks

    Cate.

  • Ah, Thanks Cofdrop, exactly what I needed to read. My main hope has always been Lung reduction, and this appears to be his area of expertise, which is brilliant, if anyone can help me he is certainly the right person.

    Thanks so much for the link and info:)

    Cate

  • You're most welcome.

    XXX

  • Cate just wanted to say that like cofdrop said the brompton has a fab reputation. Wish you well, let us know how things go! M

  • Dear Cate

    It might be worth contacting the staff at your local station to ask them if they can arrange for you to be met at Victoria and taken to the taxi rank. Some years ago a cousin of mine visiting from Australia who has MS had a lot of help and all it took was a phone call.

    Very best of luck with the appointment and do let us know how it goes.

    Best wishes

    Lesley

  • I went to the Brompton from Bournemouth on the coach and you can get the bus (if you can walk from arrivals to Buckingham Palace Road) the 211 bus stops right outside the Brompton, but make sure that if you want the outpatients dept that you don't get off the bus too soon, make sure that you get off at the stop just after it has turned the corner of ?Sydney Street.

  • Hi Cate. I live in Brighton too! and have been going to the Brompton for about 18 yrs (I go to the Fulham Road building.) I have bronchiectasis so haven't seen Dr Hopkinson, but from cofdrop's link he sounds terribly brainy and definitely the man for you! I can confirm that it's a brilliant hospital, I've always had fantastic care there and yes, everyone's very kind and friendly. I'm so glad that you've been referred there.

    It's not unusual for them to fit you into the next clinic if they feel you need to be seen quickly. Several times between appts I've become ill, phoned up and have been fitted into the next week's clinic.

    I used to travel on the Brighton-Victoria line and then get a taxi, you should be ok with that timing. However, take the outpatients dept phone number with you, and if the train is running late or there's a queue for taxis, just phone and explain. I've had to do that a few times and they're always fine about it. They take patients from all over the place & understand you can have travel problems.

    In the last few years my sister has driven me up, which is less tiring than train/taxi. We always find a space in the road opposite. This might not work for you this time as you'd be driving in rush hour. But for future reference, there are a number of disabled parking spaces for patients, phone the hospital's Transport Dept and if one is available they'll reserve it for you. You can also explain any specific needs to them re oxygen, wheelchair etc and they'll arrange it for you. Don't forget this is a specialist lung hospital so they're used to helping very poorly people.

    Good luck - you're going to the very best hospital! Do let us know how your appt goes.

    love, ff x

  • many thanks for the kind words of encouragement and all the advice and help about the hospital access, has really set my mind at rest. Once Ive been the first time hopefully wont be too bad, buy you guys have assuaged any worries now anyway.

    Thanks to everyone, Ill update my experience after the appointment

    Cate:)

  • I am carer for hubby Pete and when he was diagnosed with chronic sarcoidosis he was referred to the Brompton and has been going there for around 10 years. It is a wonderful place and I never mind going with him. We travel from the South Coast to Victoria and then on the tube to South Ken. It is a treck up the steps but we then have a slow, steady walk to the Brompton or the No. 14 bus goes there. You can of course get a taxi. I believe the bus goes from Victoria too or taxi again. I do not know Dr. Hopkinson but everyone there is great and you can have a coffee and sandwich whilst waiting to see the doctor. They do tend to move quickly with getting you referred so don't worry on that count. When you have been the once, then next time will be easier and you will be able to judge how much time you need. We try not to rush as Pete cannot rush. He now also has copd. Hope your appointment goes well and do let us know how you get on. Take care. xx

  • Nick Hopkinson is great. I saw him once or twice when I was going to the Brompton.

    Jude xx

  • Hi Cate I have been to the Royal Brompton havent seen your doctor. It does seem a good hospital. I also go regularly to Harefield hospital, Whenever I go to either of these my doctors surgery arranges transport and I get picked up by car or ambulance then they wait for me to come back. Its much easier than all the stress from getting there yourself. But dont know if it is to late this time to arrange it

    regards Sue

  • Hi Cate I too have been to the Royal Brompton for a year. Very nice friendly hospital and well know for their high profile for respiratory conditions. I have transport arranged each time. I live about an hours drive away. You just have to be SOB to qualify but your doctor has to make the arrangement with the transport department. This is an excellent service as you are picked up from your door and taken to the hospital and when your appointment/test are finished then they take you home again. All the best with your appointments.

  • Thanks again guys.

    I did some digging based on Eepee8s' advice, and was really quite easy to determine if they can help you. I found this info very easily for my NHS Sussex- sussex.nhs.uk/patient-t...

    Be warned its a 20-25 user waiting list.

    I waited for 45 mins on the phone, was taken through a very simple questionnaire which as soon as I said that my Doc has put severe and very limiting breathlessness, the guy was very good, and fixed me up with door to door pick up and return.

    Its so much of weight off my shoulders, I cant thank you enough,

    Would also stress to anyone in same boat as me, with a long hospital journey, try your Paitent Transport service, they may be able to do everything for nothing.

    Nice chap, mind rested:)

    Thanks again

    Cate:)

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