Perifidone and the royal Brompton?

[Jaysea8t]

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

[mrsmummy]

If you look at the 'Related Posts' you will see a few about the Royal Brompton. Or try the search box (above right) to see previous posts about it.

Welcome to the forum.

[Jaysea8t in reply to mrsmummy]

I can’t seem to find a related posts section and the search tab does not work

[mrsmummy in reply to Jaysea8t]

Related posts will be in a different place, depending on what device you are using. If you are on a mobile phone I believe they are down at the bottom. To use the search box you type in the term you are searching for and press enter.

[mrsmummy in reply to Jaysea8t]

This is what came up when I did a search for Royal Brompton:

healthunlocked.com/search/r...

[MisUse]

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

[monju in reply to MisUse]

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.

[Jaysea8t in reply to monju]

Thanks for the reply, like I said any advice is welcome both good or bad. Thank you

[MSMichaela1966 in reply to monju]

Monjou I'm very unhappy that you've said that the Royal Brompton hasn't given you the right treatment.. can you enlighten others to your mishaps. [edited by administrator]

[Jaysea8t in reply to MisUse]

Hi thanks for getting back to me, I have booked a consultation for my dad on Monday so hopefully we have the same kind of service that you have received,there seems to be a big difference in opinion as to the service they provide. Thanks again

[MisUse in reply to Jaysea8t]

Really hope it goes well, let us know how you get on.

[Joy123]

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

[Jaysea8t in reply to Joy123]

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

[Joy123 in reply to Jaysea8t]

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

[Jaysea8t in reply to Joy123]

Thank you

[Posative]

Hi I also have IPF when my coughing got really bad I was prescribed liquid morphine it settled it down my gp prescribed it worth a try good luck on Monday