Update on Royal Brompton referral

[Seagullcity]

A few people asked me to let them know how my trip to the Royal Brompton hospital went yesterday. Perhaps my expectations were a tad high. But I was sent home after 2 hours following a nice chat with a consultant, an unimpressive session with physio and a long wait standing in a corridor with lots of others for a blood test. The consultant was very pleasant and informative but was unable to comment on my specific case as apparently he had not been forwarded any of my test results or CT scan images. As my referral was made back in early October, this really beggared belief. They have now made a video appointment for me for late summer. Frankly I’m sorry I forked out for and battled the peak time travel yesterday and lost sleep over it. 😕

[Mellywelly]

Sorry chook, you must be so disappointed. Another case of the left hand doesn't know what the right hand is doing. I would seriously complain about it. 😉

[Ergendl]

What a disappointing day for you!

That deserves a strongly-worded letter to the hospital asking why all the results weren't there. Include a reminder of all the trouble and expense you had to get there to attend.

Hope the next video session goes a lot better for you

[Millyboo710 in reply to Ergendl]

Not the hospital’s fault. The strongly worded letter needs to go the GP.

[Swizzy]

That’s very disappointing.

[BenHall1]

My experience has shown that there is only one way to deal with this and it involves the ultimate of complaints. Takes time and a bit of dedication but gets results. I complained to my Westminster MP attaching a detailed report of the topic at the time with the request that he personally - as my MP - refer the matter to the Secretary of State for Health to deal with and given me a conclusion. Boy oh boy .......... did that get results and shedloads of grovelling apologies. Better still it put the Hospital Trust I was under at the time firmly in its place.

Good luck.

[Seagullcity in reply to BenHall1]

Hello and thanks for this and to others above for their responses to my moan. I won’t put in any official complaint as I’ve no idea who is to blame for the mess up and I suspect it’s just part of the problem of the whole nhs system being currently overwhelmed. I also suspect that, as my condition is probably ‘mild’ and I’m described as ‘active’ that I’m maybe seen as lower priority. But my view is that the longer I can prevent deterioration and stay moderately healthy, the better for all. On the plus side, my blood test results have just come through in MyChart, which is pretty quick 🙂. It has highlighted an abnormality but I need to do some research first to understand this better. S

[Shirazmataz in reply to Seagullcity]

The NHS is firefighting, people have had to wait so long that consultants are seeing the cases that should never have got so bad. Yet, they keep saying that their emphasis needs to move to more preventative work, and your situation is just as important however milld it seems now in comparison. The NHS is a huge worry. We all need to work hard at looking after ourselves as you say and prevent deterioration.🤞

[PW_R in reply to Seagullcity]

If you stop all respiratory viruses then you can largely halt the progress? Easier said than done but I think we all have to take mask wearing beyond seriously for 7 months of the year or we’ll simply progress every winter. Or move somewhere warm for those months & avoid winter. Once the health is gone, everything is gone as Iv found out.

[Seagullcity in reply to PW_R]

I expect preventing exacerbations means that lung damage isn’t significantly increased at intervals, but I doubt anything halts the progress as the inflammatory cycle continues regardless. But I agree with you about mask wearing and I was so surprised to find that hardly anyone on the train or London underground or indeed in the hospital, apart from some staff, wore a mask. And presumably all these patients had respiratory issues.🤔

[helenlw7]

How frustrating for you. I think I would get in touch with PALS and explain what happened.

[Alberta56]

What a shame. Lots of us here were really hoping, and expecting, that this appointment would be really helpful. I think you need to write a strong letter, insisting that all the relevant info is in place before you are subjected to an exhausting, fruitless journey.

[Seagullcity in reply to Alberta56]

It did feel a bit fruitless (especially on the train ride home when tiredness was seriously catching up with me) but hopefully things will go better now I’ve at least made a connection with them and spoken to a consultant who was very professional. Less so we’re the two doing the physio but one was a trainee to be fair. He asked me how much phlegm I produced daily and I told him it was variable and that I didn’t measure the quantity. But when he kept asking how much I said it was sometimes probably as much as 50 ml. He didn’t understand this and asked if that was 1 or 2 teaspoons! Likewise, he kept asking how thick the phlegm was and again I said it varied, but he kept asking how thick it was. I asked him to explain his scale of viscosity and again he didn’t appear to understand. But without a graded scale the question is just confounding. I’m perhaps too critical as I’ve worked in science labs most of my life, but I would expect medics to work in the same way.

[Alberta56 in reply to Seagullcity]

🙁🙁🙁 What do they teach them these days?

[Patk1 in reply to Seagullcity]

I use disposable cups for lung clearance so can see how much,colour,viscosity etc.i put tissues in cup whn finished+ use nappy bags

[PW_R in reply to Seagullcity]

Did they help with clearance techniques? Why havnt they invested a cheap vibrating vest for bronch & copd patients.

[NieceByMarriage]

This is completely typical of the NHS these days. I had a phone appointment with my GP the other day at which I wanted to discuss my lung scan report and the need for a follow up. I had obtained the result from the hospital myself and I delivered it personally to reception on Monday for an appointment on Friday. I explained in painful detail to the receptionist that the scan report needed to be in front of the doctor or scanned into their system by Friday and had written this on the envelope too. Did the doctor have it? No. Had he seen it? No. Was it on their system? No.

I totally understand your reluctance to complain because I am still working up the energy to complain to my GP surgery about this latest incompetence. I have had cause to make two formal complaints in the past 18 months and am probably viewed as a troublemaker. But honestly, if you don't complain they will blithely assume all is fine. Doesn't matter if you don't know who to blame because you can just report the incident to the person who referred or to the hospital complaints team without assigning blame yourself. If it lands up on the desk of the blameless they may be in more of a hurry to get it sorted so they remain blameless.

[Seagullcity in reply to NieceByMarriage]

Incredible that they managed to avoid doing the straightforward task that you had so diligently requested. You must have been quite annoyed.

[BronchyBronwen]

Really so sorry you had to go through all this. I really would put in a complaint of some sort -if you have the energy to do it.

If any comfort, I paid for a second opinion on a nhs spinal operation I need; not only did I have to pay a pretty huge amount (OK, my choice) but I had to pay it before the consultation. Consultant examined me; I told him I had pulled a muscle in my groin and he pulled that leg. I shouted out in pain. He now suggests I consult one of two suggested colleagues (privately, of course), stating it was a 'flare-up' ! Not a flare-up as didn't have the problem in the first place! Grrrr. Left me feeling worse all over holiday period.

Sorry, I seem to have made my reply all about me which I hadn't meant to. Just sympathising with extent of bad communications and bad practice. xx

[MoyB]

I'm so sorry to hear about your appointment experience. I understand completely about the anxiety that comes with waiting and still knowing nothing at the end of it. Like others, I would suggest a polite but clear written account of your experience be sent to PALS I have found this helpful in the past.

Explain about the anxiety of waiting and the unnecessary journey with its cost and added stress but focus, perhaps, on your concern that it was also a wasted appt for the consultant. Maybe suggest that the system may have gone awry through human or electronic error and ask if it can be checked and followed up with appropriate action if required. You may have time to do this whereas the consultant may not.

When I took something up in this way, it was investigated and a systematic error was corrected.

However, be prepared for a non commital reply at first and in the end it may indeed be put down to the pressure the nhs is under.

But think how many more wasted appointments people may have (including you) if there is simply a glitch in the system.

I find that doing something about a situation can make me feel a lot better about it but ignore what I've said if it doesn't work for you.

Xx Moy

[Millyboo710]

I’m sorry that was your experience.

I would contact my GP and the hospital which referred you to the RB. I wouldn’t mention the travel and expense - that’s what happens when you’re referred to a non local specialist hospital - but I would mention the disappointment, anxiety and distress.

[LissacFrance]

Not good, but why is the UK so late in having a national computerised system. Here in France, we all have a "Carte Vitale" which we hand over to the doctor, ospital reception, pharmacy etc so that they have access to all your info. The hospitals such as Toulouse have their own inhouse internet so that x-rays, CT scans, test results are available at all the sites, and there are a lot of hospital both large and small in Toulouse. Start asking your MP why more is not being done to cut down on wasted time, your time and the consultants. He can`t advise if he doesn`t have the info. Have a good day, I`m off to collect my wife after a physio session. Chris.

[Izb1 in reply to LissacFrance]

And that is the way it should run Chris. We are so far behind in the UK . I had an upright mri scan done at a private clinic in November that was requested by my gp to neurologist. When i visited Ent last week and told him about this he said it wasn't on the system, and this is normal.

[Seagullcity in reply to LissacFrance]

Seems like a fair question to me

[JJ_7]

Oh no what a pain Seagullcity! I have just been referred to the Brompton Hospital so I will ask my GP if all the reports have been sent. Thank you for letting us know. Hope your next consultation is helpful. xxx 🤞

[Seagullcity in reply to JJ_7]

Good idea, wish I had checked this beforehand (though really not my job as a patient!). I just took it for granted, silly me….

[JJ_7 in reply to Seagullcity]

No it certainly isn't your responsibility. I will remember your experience so thanks for posting x

[Poppy2525]

I sympathize been through the same with St Thomas going back the early February £157.00 for two railway tickets then taxi and all the anxiety to be told they haven’t got the notes to hand and will monitor the situation, absolute shambles

[PaperQueen]

How very annoying and disappointing! Why on earth can't they communicate properly? They could have at least saved you the journey and told you beforehand that they didn't have all the information they needed. But not to have all the results to hand after 3 months is disgusting and now to wait til late summer!!! I would definitely complain. Good luck. xx

[Coughingalltheway]

I'm so sorry to read this, I know that you put a lot of hope and faith in the Brompton. I was toying with the idea of asking to be referred there after my local consultant made me feel like I was wasting her time plus she also didn't have my records to hand.

They were brilliant when I was taken in with respiratory failure but the minute you're discharged, it's off to the back of the queue again. They don't seem interested in preventing deterioration, which is my goal plus most people's I should imagine.

I'm ranting yet again 😏 sorry! I hope that you have more success with your video appointment, I'll keep my fingers crossed for you.xx

[lovejoyliz]

Hi Seagullcity,

Referral for the Valve implants due to my lung condition.

Sorry that you had such a tough time, can you tell me what team you were under and the name of the Consultant you saw.

My GP referred me to BH last October as well, and l was sent for CT Scan, Echo Scan, unfortunately the transport driver was an hour late! for the CT Scan so they had to re-schedule that, but l got the Echo Scan. Then l was sent to the Pulmonary Rehab center at Harefield Hospital for 16 sessions (which l did enjoy). Got info back on MyChart site.

After completing everything l then had to go back to Harefield for a rigorous 1 hour pulmonary session. My next appointment with the Consultant isn't until April for the results.

Breathing is bad, even combing my hair l get out of breath, and there is mild fibrosis in the lower left lung and emphysema, So we wait and see what happens with these long waits, in the meantime the condition could deteriorate faster without any further medication assistance that is available in slowing down the fibrosis.

[Otto11]

That’s so frustrating for you 🙁

[Germantara]

Oo what a dissapointed day sorry to hear that

[janedivney]

Oh no!! I’m so sorry you had such a disappointing & tiring day, especially as I’d bigged them up so much. I can’t believe their diagnostic service has dropped from gold standard in the 1990s to this very basic level. The only thing I can think is, they’re no longer an independent hospital but have been absorbed into the local trust ie Guy’s & St Thomas’. But you wouldn’t expect it to have changed this dramatically eg they always preferred to do their own tests & scans, not rely on another hospital’s. I don’t know what to say but think you should write to the consultant and tell him/her how you feel.

[Seagullcity in reply to janedivney]

Hi, yes, the consultant did say they would carry out their own scan, but I gathered they like to see any prior scans and reports before they arrange that. I expect they will prove to be just as good and professional as you said they are. I just need to be a more patient patient.