PCD Family Support Group (UK)
302 members147 posts

Having a tough time.


I'm really struggling at the moment, my husband has taken a turn for the worse with his condition and has been on constant IV's in the home for the part 5-6 weeks.

I've spoken with the PCD consultant at the Royal Brompton and he is more than willing to see Paul but his Consultant wont entertain sending a referral because he is a "chest doctor". I can appreciate this but my argument is that Brompton specialise in this condition and will have more information etc. I'm just so frustrated and upset. Paul's had to give up work because he just cant get his oxygen levels to stay up, I've gone part time in work to do the school run with our 4 year old and take Paul back and fore the hospital which is fine, he's my husband and I love him. But we're struggling financially and i'm struggling emotionally. We live in a house and Paul has to sleep down stairs. I have been on at the council for the past 4 years for a bungalow for him and have been trying to find a private rent in our price range but theres is nothing. We've been advised to get rid of our carpets and sofa's as they are material and he needs laminate and leather as well and I'm like Ok, ill just go out to the money tree out the back shall i?

Sorry for venting so much :(

11 Replies

Hi - sorry to hear that your husband is not doing well. I would definitely get a referral to the Brompton ... you can get one from the GP. I would recommend Dr. Michael Loebinger or Professor Rob Wilson. You can tell his consultant that you are going to see an expert in PCD for a second opinion as you are very worried about him.

As for the housing issues... have you mentioned this to the consultant? He should be able to write you a letter of support with reasons to back up why it would be useful for you to move. Alternatively I can write you one from the PCD Family Support Group if that might help. I would need some more info though.... so please email me directly Fiona email: chair@pcdsupport.org.uk

No need to apologise for venting.... :)


Thank you Fiona, It as Dr Loebinger I spoke with and he is more than happy to take Paul on, it's Paul's consultant at his hospital who has the issues lol i feel like screaming!! Aw thanks Fiona, ill Email you once I'm home from work. :)

Thanks for letting me vent :)

1 like

no problem.



I'm sorry you are going through so much stress- some of which is so unnecessary it sounds eg this reluctance to refer?!

I agree with Fiona. Say you want a second opinion and get your GP to make referral. The consultant you are talking about doesn't need to.

I see Prof Wilson who is fantastic and is the top of this field. It sounds like your husband does need specialist help. I hear Dr Loebinger is great too.

Contact your GP who will have tour husbands history and will understand your predicament and make that referral for you. Then you ring back Dr L again to say referral has been made but if he could be seen earlier?

Good luck!

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It definitely sounds like a trip to the specialists at the Brompton are in order and suggest you follow Fiona's advice. The team there got me through a very rough patch 10 years ago, when I was in intensive care and an in-patient for many weeks. I took a long while to get back to being well again, but I did it. I am now super vigilant about looking after myself and the after care at the Brompton is superb, I can't thank them enough for what they did for me and continue to do for me.

Wishing you and you husband all the best, please push for an urgent referral.

By the way it has never been suggested to me to get rid of our carpets and cloth sofas and we have both. Not sure how that works anyhow, as we go visit other people with carpets and stay away when travelling, etc., so can't really avoid them,



I just feel its like its hospital politics because we want to be referred to a health board in London and we are in South Wales.

I called Pauls doctor yesterday and only got to speak to a locum who was about as much use as a chocolate teapot and i think my 4 year old son had better manners than her!! She just told him to make an appointment to with another doctor and point blank refused to deal with me even though Paul had told her he wanted me to speak on his behalf. (He's on oxygen pretty much 24/7 at the moment and find it difficult to have a ling conversation).

The ACT team that visits Paul at home to give him his meds are the ones that advised about getting rid of the carpets and sofa's. She said it was because Paul is now presenting with allergens along with everything else we need to do all we can to eliminate the factors that could be causing his reactions.

When we lived in Scotland Paul had regular CT scans (annually) down here they wont consider it, His nurse has fought to get him one and also a heart scan as they are now worried about heart failure....surely with all this his consultant should see it's in Pauls best interest's to be referred to Dr. L?

He's also been put on steroids to help with a wheeze he has which is causing him to out on weight, which is affecting his mood.

I just want to scream!!!!


Have you called Dr L to explain all this and ask what he suggests you both do now?

Red tape is such a pain in the ...surely this referral is in your husbands best interest!

I know it is hard but keep chasing and pushing it at Royal Brompton to help you.



I agree with Iram, above. I think this is a situation where you just have to keep pressing on, until you get that referral. Very difficult when your husband is not feeling strong enough to talk and do battle with a doctor that doesn't appear to be listening.

Once you can get him under the care of Dr. L, you will at least be reassured that he is getting the best and appropriate care that he needs.

I am fortunate that I live close to the Brompton, but I have met patients from all over the UK in the many years I have been attending there. I'm guessing the reason why your health board are reluctant to refer him is down to money, no doubt.

Please keep on pushing for that referral.

Thinking of you.


So sorry to hear what happen to your husband. Stay positive as I know that there can be tough times with this syndrome and that he must be brave and let him know that he is not alone there are many of us in the world.


Thanks everyone, we was back at the consultant today and they are now talking about a double lung transplant.... it still hasn't sunk in, it's completely thrown me and I dont know what to do, I'm trying to be strong for Paul but I made the mistake of googling transplants and I'm now a mess. I know it's not going to happen over night but all I can think is that my husband is 35 and should be fit and healthy and be able to play football with his son and go for walks to the park, but he can't, and it's not fair. I know it's selfish and horrible to think this but I can't help it but why did it have to be him, why did this have to happen to my family why couldn't this be an article I'm reading in a paper and not actually happening to us.. I'm sorry I just can't believe this is now happening xx


Sending love xxx



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