Hi, I am writing on behalf of my dad. He’s 67 years old and has been suffering with ipf for the last two years, lately his symptoms have worsened he is on more or less constant O2 and is coughing all the time also his breathlessness seems to have got worse with very little exertion. We have booked a consultation at the royal Brompton in London as the nhs seems to be proving very little help to him. My question is does anyone have experience (good or bad) with the Brompton and also what is the best medication he can hope to be prescribed for his condition? I know we can’t cure this but just want to see his quality of life improve less coughing and less O2 would be our main hopes? Any assistants or experiences you can share would be greatly appreciated. Thank you
Perifidone and the royal Brompton? - British Lung Foun...
I am a patient at Brompton. I have heart and lungproblems so amunder both sides and have been since ‘98. I find them extremely supportive and they are still trying to get me better breathing wise. Am waiting on tests to change valve and although my lung function isn’t good enough for surgery they are looking at other options. I truly feel that if they can’t help me I doubt I can be helped. BTW I am nhs patient. Let us know how you get on
Hi I have been with Royal Brampton, I am sorry to say they are totally at a lost, I have found them rude and really unprofessional, my GP and local hospital are more helpful, they more interested in having results rather than helping.
Sorry they are just a waste of time and appointments are so far apart.
I’ve been with the Brompton for nearly 50 years. They are extremely busy, not like in my earlier days with them and are only interested in complex cases. I used to get a repeat appointment every month or so but nowadays only get seen every six months. They are extremely good if there’s anything new they’ve probably invented/discovered it. Your dad will prob be prescribed their usual package of prednisolone, antibiotic, possibly inhaled and if needed home oxygen. But! We are all different and they might have something that will suit him and give him an improved quality of life. Never give up, keep positive and encourage your dad to do as much for himself as he possibly can. Any exercise, no matter how small is better than none. The Brompton really do encourage excercise if you’re an inpatient they round you up for the gym daily. Even making a cup of tea is excercise. X
Thanks so much for your reply, he is already on oxygen and is a real fighter who never gives up. After having his initial biopsy it damaged his lung which led to him suffering from surgical heamothorax causing his whole upper body to fill with air he swelled up like a balloon and all his airways became obstructed, he spent 10 weeks on life support and we were told on several occasions he would not make it and if he did he would spend his days in pallletive care. However he came through and continues to lead a decent standard of life, driving, shopping, basic diy etc all be it on constant oxygen. Over the last 18months his breathing and coughing has become considerably worse and seeems to be struggling more and more. Why would the nhs not have prescribed him with the drugs he needs sooner? I’m just hoping this private consultation may help and improve his symptoms. It seems crazy that befor anything is done you have to pay to see someone to get something that is readily available on the nhs, once again thank you
Ahh! Sounds like your dad has had a really bad time. I hope once seen at Brompton as a private patient he can transfer to NHS as, as you say, free treatment is his entitlement. I’m sure they’ll be able to help relieve his continual coughing. Coughing non stop is very very tiring and draining. Good luck with the appointment. When is it? Let us know how it goes x