Very interesting talk

[skinnylizzy59]

Hi Everyone, just got back from our Breathe Easy meeting which was held very early in the month to accommodate a very important speaker, Dr. Ravi Madeheva from Addenbrookes Hospital in Cambridge. I think that when he had finished everyone had 100% more knowledge about their illness than before. One of the most important things he said was that if you are not happy with your medication ask for a review with the Respiratory Nurse or your Doctor and also, don't be afraid to ask to see a Consultant because, after all, it is your life.

I hope this helps anyone who may be wondering what to do next.

Take care, Lizzy x

[onamission]

This guy sounds very interesting sadly we are not as lucky to have a consultant like him.

The consultant we have I saw him about 3 years ago I came home and straight away found out which hospitals he works at and I have chose to go to Stafford he is that bad

[mmzetor in reply to onamission]

I see him early this year and to be honest I didn't rate him too much , all he was interested in was if he could do lung reduction or not , he argued with me that when I done the 6 min walk test why did I make stops doing it I explained because I couldn't breath he said but you oxegen levels didn't drop if you couldn't breath they should have gone down like I was lying , first time I see him he had a nurse with him who done most of the talking and more or less told him what the course of treatment should be for me , I was original sent to him because copd community nurse wanted me to go to papworth to help stop me getting chest infections they wouldn't take me but referred me to addenbrooks he hardly mentioned about chest infections and certainly nothing to help stop getting them , like I said it was all about lung reduction and that was it ,

[onamission in reply to mmzetor]

my levels never drop I have had a chest infection and still stayed the same its o my records now. We have something in common 😁

[mmzetor in reply to onamission]

mine do drop a little when I have an infection and when I was in hospital when I had op I was put on oxygen but normally they don't drop if im ok when I walk but still get breathless , he was saying oxegen should drop if you have to stop walking because you cant breath , I also asked him what stage I was at as lynn consultant put me as servere from my dcol result and ct scan he said well depends how you look at it there are better than you and worse than you but never gave a straight answer ,

[skinnylizzy59 in reply to mmzetor]

Hi mmzetor, I asked the Doctor at Papworth, I said that I had read on HU about different stages and asked what stage I was at and she didn't give me a straight answer either.

[Watfordgirl in reply to mmzetor]

Yes. Well. Helpful?? x

[Watfordgirl in reply to mmzetor]

So he had his own agenda? There are quite a lot of those around. I hope you're seeing someone you get on with a bit better.

Sue x

Sorry - that's to mm's first reply. Don't know how it came all he way down here.

[mmzetor in reply to Watfordgirl]

I go back in march 2017 to see him again , he wants to do the tests again to see if he can do lung reduction this time , it was funny really we sat a fair while waiting to be seen and every patient who came out of his room said to his or her family that were waiting he wants to see if he can do lung reduction on me , this was at least 5 patients

[Watfordgirl in reply to mmzetor]

Strange hobby. I don't think that many patients are eligible, but who am I to know!!

[mmzetor in reply to Watfordgirl]

I had one side done in 2013 but that was because of collapsed lung but different consultant and hospital ,

[grannyk3]

Thank you for this information.....very helpful. I've yet to ever go to a Breathe Easy meeting.

Krysta

[sassy59]

What a good man to be so kind and caring enough to take time out and attend your meeting. He gave good advice too.

Good post Lizzy. Xxxx

[skinnylizzy59 in reply to sassy59]

Glad you liked my post Sassy59, we had a real struggle to get this Consultant to come to our meeting and it was only through a lot of phone calls and emails by the Respiratory Nurse from WSH that we got him. We were given a specific time frame (we usually meet on a Thursday between 1.30 - 3.30) and told we had to be ready for him, so were all there waiting with lots of visitors we had invited from other Breathe Easy Groups, when we were told he was stuck in traffic so we were 35 minutes late starting and he didn't seem to be in too much of a hurry to leave and he was very pleasant and not at all officious. We all agreed that the wait had been worth it.

Take care, Lizzy x

[mmzetor in reply to skinnylizzy59]

35 mins isn't bad I waited well over 3 hours at addenbrooks to see him not his fault really , I booked in waiting area full of people gradually they kept disappearing till only us there then another lot all came in then they too all started being seen and disappearing in end we went to reception said we been here nearly three hours still not been seen and people hours after us are going in she said you should have been seen ages ago she rang through and he thought every one had been seen and had gone of to do his ward rounds he did come back about half hour later and was really apologetic about it , my appointment was a 2.30 I ended up being seen at 6 .00 ,

[skinnylizzy59 in reply to mmzetor]

You were very patient (pardon the pun) to wait that long after your appointment time, I'd have been raising steam long before - for warned if for armed.

[skinnylizzy59]

Sorry you weren't impressed with this Consultant, we at Breathe Easy Bury-St.-Edmunds were all saying that we wish we could see him as he seemed to understand all the problems with inhalers and advised us to ask if we really needed to use all the ones that contain steroids. He also talked about lung reduction surgery and how it is done and how it helps suitable people with breathing. He also told us about the device which can be put into the lung when the alveoli (air sacs) stop working, i.e. putting oxygen into the blood

Take care, Lizzy x

[mmzetor in reply to skinnylizzy59]

yes he doesn't like people being on high steroids because of the side effects he cut down on the steroids the gp was giving me and changed me off seretide to fostair he said at my age and having had back op if they wasn't careful I would end up with osteoporosis

[sassy59 in reply to mmzetor]

Not good to be on high steroids Malcolm as Pete knows to his cost. He has osteoporosis but only found out through the Royal Brompton.

You take care. Xxx😘

[mmzetor in reply to sassy59]

dawns nan has it think that was to do with being on high steroid inhalers too and tablets

[sassy59 in reply to mmzetor]

It's awful if you don't realise as the damage is then done Malcolm. Pete takes Risidronate weekly to help.

Wishing you, Dawn and her Nan well. Keep warm. Xxx

[mmzetor in reply to sassy59]

thank you sassy , nans not too good she had a couple of falls then bad chest infection home now but was in hospital for over a week now sorting out getting carers in ,

[sassy59 in reply to mmzetor]

Sending hugs to Nan and hope she does well with the help of carers. Take care Malcolm. Xxx

[mmzetor in reply to sassy59]

thank you , the carer bit im not sure how that will work out she is be accessed , but if she gets them wouldn't put it passed her to tell them to bugger off she doesn't want them , or they could be best thing since sliced bread no telling with nan

[Hidden]

Sounds great. Did he say how to make your doctors refer you to a consultant when they consistently refuse and get angry when you pursue it? And did he say how to get an appointment with your doctor to discuss this when they always refuse saying they haven't got time and you must see the respiratory nurse? But there aren't any appointments available with them coz they don't have enough staff? x

[velvet55 in reply to Hidden]

Oh Bev

l totally agree with you, l have been diagnosed with copd for a few years.

I have asked time and time again to see a consultant, and l would like a scan, so l know exactly what is wrong with me...but like you, l am constantly refused.

I had six exacerbations last year, two requiring a stay in hospital...l still didn't get a scan.

After numerous heated debates with my last GP, l have now changed practices...but l think l have more chance of an Audience with the Pope than seeing a consultant.

xx

[Justdoit2015 in reply to velvet55]

It does seem to be a lottery. I am borderline/mild COPD and have seen a consultant twice in the last few months with another appointment booked.

I often read posts from people with severe COPD who cannot get an appointment with a consultant, and have yet to have one. It appears to be a very unfair lottery.

[Hidden in reply to Justdoit2015]

Where do you live? I am moving there! x

[mmzetor in reply to velvet55]

do they have copd community nurses in your area ,if they do see if you could be referred to them they are very good and it was through them that I got seen by a consultant , what ever they tell the gp to do the gp seems to do , The nurses if not sure about something go straight to the consultant and get advice of him too if need be, it was through them that I got the rescue pack and got my inhalers changed to be honest the gp didn't have much of a clue about copd ,

[skinnylizzy59 in reply to Hidden]

Oh dear coughalot2, could you see another doctor or try your local Clinical Governance Group who run the hospital and liaise with doctors. Or your local NHS organisation for your county. Is there a Breathe Easy Group near you as they sometimes have contact with a Respiratory Nurse who might be able to help.

Then there is the local Patient Liason Service (PALS), they sometimes have a poster in doctors' surgeries or a leaflet, as the Receptionist at the surgery. Hope this helps and that you can get some help. Lizzy x

[Hidden in reply to skinnylizzy59]

Thanks for that Lizzy. It apparently is the policy at my surgery that they don't refer until they can no longer handle your care, so no point in asking another doctor there. I guess this point would be at deaths door...

Some food for thought there though thank you. x

[Hidden in reply to Hidden]

Ok I am only high moderate but I also suffer from depression and anxiety which is made worse by my copd, bad back and hidradunitis suppourativa (skin disease which causes abscesses).

I receive very little support for any of them despite asking for help. I got referred to a dermatologist for my HS, but when I asked to be referred again for more specialist treatment I was refused. All doctors do is give me ab's.

My back is painful and has been since I was young. I have always been refused an x-ray coz they said it wouldn't show anything! When I paid privately for one it showed one of my discs has gone and another one is wearing down which causes the pain. All I get told is that this is common with age, told to exercise more and visit the physiotherapy dept at my local hospital. I did once and just got given exercises to do which don't help. I get given mild painkillers which don't even touch the pain.

As for my depression it has got quite a lot worse but I was turned down for NHS counselling as it is rationed now in my area. I might as well bang my head against a brick wall as ask for proper help. Because of my depression half the time I think well if no one else is bothered then I am not either. So I just put up with it and suffer in silence. I find it much too stressful to fight for my rights. Maybe they consider that at 62 I am too old to bother with? x

[Katinka46 in reply to Hidden]

So sorry about your situation. What a nightmare. Whatever treatment you get or fail to get repeat this sentence: "There is no one in the world who is more important than me." True. It is also true for everyone else on the planet but it is still true for you. You matter. Who you are matters. What you do matters. You matter. Forget the age thing. You are a mere youngster compared to many of us here. You deserve better.

Go for it, girl!

Kate xx

[Hidden in reply to Katinka46]

Thanks Kate I know that's true. But if everyone treats you like you are worth nothing then maybe you aren't x

[Katinka46 in reply to Hidden]

Whoa.... please don't say that. It may be hard to believe it when you are down but it really, really is their problem, not yours. I shall go on gently nagging you.

Love and hugs

Kate xxx

[Hidden in reply to Katinka46]

Bless you Kate. My self worth has always been low despite my many attempts over the year to make it higher. It's a lot better than it was though....it's all very Freudian and old history but I find I need a lot of reassurance from friends. Like I said - very Freudian.

You carry on being caring love - that's the most wonderful thing anyone can do for me.

Hope you are ok. Bev xx

[Katinka46 in reply to Hidden]

Thanks, Bev. I am very lucky, chest stuff isn't good but I have great support from family and friends.

Kate xx

[velvet55]

Hi justdoit

I am borderline moderate/severe, getting worse by the year...l just wonder how bad you have to get before you can get to see one of these Demi gods...probably when it's to late !!

xx

[Justdoit2015 in reply to velvet55]

Hi Velvet, it is very and difficult and unfair how consultants' appointments are distributed nationally. It is a post code lottery, for access to good GPs and Hospital/Consultants in your area.

The only reason I can see me getting appointments is just luck and possibly age. Whenever I see a nurse at my GP or at a Hosiptal, they look at my results and always mutter something along the lines of "you are very young for these results".

Just turned 40 in case you were wondering

[mmzetor in reply to Justdoit2015]

hi just do it im a year older than you , one of the doctors I see said my emphysema shouldn't have been as bad as it was just from smoking at my age he wouldn't have that it was anything to do with me being on farms from a very young age in dust and chemicals his conclusion was I must have smoked weed I said I never touched it only tobacco but he wouldn't believe me , all he kept saying was tobacco wouldn't have done so much damage at that age even if I was a heavy smoker ,

[Justdoit2015 in reply to mmzetor]

Hi, yes, I noticed you are the same age as me and I have been following your posts .

I get a very similar response from the medical people I see : they all seem to do a lot of umming and saying even if I was smoking 3 packs a day since I was a teenager, I still shouldn't be this breathless at my age even with COPD.

[mmzetor in reply to velvet55]

velvet I think your results are around the same as mine low 50s , my gp wanted to stop my seretide completely and not give me anything else she told the surgery nurse at chest clinic to stop it I kicked up a fussy about it with the nurse said gp didn't want me to have it in first place but hospital put me on it and said I should have been on it before , so that nurse referred me to copd community nurses who referred me to a local consultant he doubled the seretide dose and wrote to gp and said not to stop it I ask why she would want to stop it he said because the gp surgery spiory test only shows a few results and to her the results she see means we aren't that bad but he done a full lung test and he said it was the dlco that was low and that was why I was so breathless ,

[velvet55 in reply to mmzetor]

Hi Mm

Mine is 49....what a bloody cheek your GP saying that without a consultants advice...you should have told him to live a day in your shoes, then he may think twice !!

I wonder how often the GPs have their spirometer calibrated, they probably have guidelines for this, but l do wonder who checks to see if they have adhered to it.

Rant...Rant...Rant...

That's it, l feel better now !! 😂😂😇

xx

[Hidden]

I read a drs surgery has to pay for every patient they refer to hospital,even then theres no rule for u to see a consultant