I could cry.....

[Bronagh2015]

Hello all, yesterday I received a letter saying that due to unforeseen circumstances my long awaited and desperately needed appointment at the Difficult Asthma Clinic in the Regional Respiratory Centre has been moved from next Wednesday to 26th April. Honestly I'm just gutted! I have been struggling for so long as my Respiratory Dr and my Rheumatologist (I have MCTD and Raynauds) have done everything to try to get things under control and improve the breathlessness. I'm usually quite stoic but this has truly knocked me for six. Thanks for listening.

[sassy59]

Makes me really cross reading your post Bronagh. They just don't get it do they! That's a long wait when you need help. Is there no way round it?

Thinking of you. Xxxxx

[canalchris in reply to sassy59]

So sorry to hear that, Try to stay strong and not get so despondent. We are all now at the mercy of a failing health service.

[Bronagh2015 in reply to canalchris]

Unfortunately that just it Chris, I'm making pancakes, they'll pick me up I'm sure.

[Bronagh2015 in reply to sassy59]

Thankyou Sassy, I've left a message for my Respiratory nurse hoping that maybe she can do something, but other than that I don't believe there's anything else I can do. I live in Northern Ireland so there only is one specialist centre.

[Pam1952]

Hello Bronagh. I'm so sorry that this has happened....you must be devastated. Could you ring your consultant's secretary and see whether they could get it moved forward for you? I really don't think they should be allowed to change longstanding appointments at such short notice.

Thinking of you. XXX

[Bronagh2015 in reply to Pam1952]

Thanks Pam, I have left a message for my respiratory nurse and yes I will ring my Rheumatology Dr, I might as well try everything.

[Hidden]

So sorry to hear this, shame our illness don't go on hold whilst we wait for much needed appointments, maybe u could phone them and ask them to call u if a cancellation comes up b4 ur date 😳 Fingers crossed for u xx sonia xx

[Bronagh2015 in reply to Hidden]

Good idea Sonia, I will do that. Thankyou

[Hidden in reply to Bronagh2015]

Worth a try Bronagh, people cancel for lots of reasons and if u can jump in so it don't go to waste surely it helps both sides . Let me know how it goes 😊👍🏻 Xx sonia xx

[Bronagh2015 in reply to Hidden]

I'm not working Sonia so I could go at short notice. Thanks so much for your concern, I'll keep you posted.

[Katinka46]

So sorry. That is dreadful. Any chance that you could get your team on board to push for an earlier date? Is this your first time at the DA Clinic and do the doctors know how ill you are?

Worth a try? Consultants' secretaries can be excellent.

Kate

[Bronagh2015 in reply to Katinka46]

I'm going to inform them all about this Kate, it will be my first appointment, you can only be referred when everything else fails and they were all extremely eager for me to be seen as soon as possible. It doesn't help that there is only one centre like this in Northern Ireland.

[Hidden]

The problem is that the appointments clerical people are apart form the medical people. I've just had the same sort of thing happen over my glaucoma appointment which they put off until April. I phoned appointments and insisted they refer up to higher authority and will be leaving shortly to keep my new appointment date.

[Bronagh2015 in reply to Hidden]

Thanks Don, I'm going to pick myself up and get onto it. It's really hard work being chronically ill!!

[Hidden in reply to Bronagh2015]

It certainly is Bronagh, I've just been told that my eye-sight is deteriorating after years of no change, just when my COPD is getting some proper treatment. If I'm stopped from using my campervan I think my dog will leave home!

[Bronagh2015 in reply to Hidden]

Oh I'm sorry about that Don, I don't think we really appreciate our senses until we are told something like that!! I'm sure you're beautiful dog will always be loyal to you.

[Hidden in reply to Hidden]

My dog won't leave until the food runs out. Have you made that phone call? They won't know about your distress until you tell them. For most people waiting longer might not be a problem.

[Bronagh2015 in reply to Hidden]

First thing in the morning Don I promise! I honestly couldn't summon up the energy today .

[Erin001]

I'm so sorry to hear your struggling sooo much

😢

Stay strong we all know how hard it is and how much it is a struggle we may not have the same situation as each other but we all struggle to breath in different ways we all get numerous infection

Let's stay strong together help each other stay strong which is what this website is for to support each other in time of need

Stay strong

Hope your ok

[Bronagh2015 in reply to Erin001]

Thankyou Erin, that's a beautiful name. I'll keep you posted.

[Erin001 in reply to Bronagh2015]

thx I like my Irish name too. hope you improve soon xxx

[Bronagh2015 in reply to Erin001]

Yeah mine is Irish as well, St Bronagh was besties with St Patrick, sure you know what they say "behind every great man is an even greater woman" lol. I'm from the North, very near the Mourne Mountains.

[Erin001 in reply to Bronagh2015]

I'm not from Ireland but I have family who were brought up in Ireland (Kenmare) but now live here and they don't have the irish accent I just have the name and I don't have the accent either.

love Ireland, beautiful place I have been once a couple of yrs ago I went to Kenmare stunning views

[Bronagh2015 in reply to Erin001]

Yes Kenmare is truly beautiful, if you ever visit again do try and get up North, it is beautiful too.

[Carnival567]

I wish they would tell us why they change appointments like this! It is so annoying, it's not as if we want to be ill. I had a go at my last hospital as it seems to be the admin staff who make these changes. Is it possible to have a go at appointments people, secretaries etc and do you have a Patient Liaison Service and complaints department? I said to my PALS group that I thought NHS was for patients and not the other way round. Hope you get things sorted out.

[Hidden in reply to Carnival567]

Appointments can be cancelled for many reasons, often because medical staff are people too. My wife's diabetic clinic appt was delayed several weeks as her nurse was off with pneumonia and the appts. had to be rescheduled with the remaining staff.

Many years ago the paediatric consultant we were seeing became unavailable for several months, he was in ICU with legionnaires.

All these sick people they mix with.

[Bronagh2015 in reply to Hidden]

Yes, you are right, we can tend to forget they get ill and have family problems etc just like the rest of us.

[Bronagh2015 in reply to Carnival567]

I know what you mean, "unforeseen circumstances " is so frustrating! Thanks for your concern.

[Carnival567]

I appreciate that, but I was also told that often the problem was that consultants only had to give six weeks notice of holidays etc. My current consultant asked me to make a fuss if I didn't get the appointment in the timeframe he wanted, I didn't so managed to get it altered. I have no objection to appointment changes when necessary but I feel except in cases of illness on the staff's part too many appointments were being altered regardless of medical need by admin staff with no medical training. The hospital admitted as much. I feel that, except for genuine emergencies the patient has a right to a proper explanation. I once had an appointment changed to another consultant I did not know anything about and when I queried it I was told he was a paediatric cardiologist. No one bothered to tell me what they were planning. I was 60 at the time!

[Hidden]

Such a kick in the teeth isn't it, Bronagh? It's happened to me before and made me feel like I just didn't matter at all. But a relative stepped in and phoned the secretary (I didn't feel able to) and the secretary spoke to my consultant and hey presto the date was brought forward. There are always spare appointments for urgent cases so hopefully they can slot you into one of those. Trouble is, when you're not well, you don't feel like phoning up & making a fuss. Gird your loins, Bronagh

[Bronagh2015 in reply to Hidden]

Ah thankyou Hanne62, I fully intend to "gird my loins" tomorrow, I just couldn't summon the strength today, the fatigue and brainfog were overwhelming, but watch this space!!

[Bettz]

THE SQUEAKY WHEEL GETS THE GREASE call them every day asking if there is a cancellation - it might work. What can you loose? Be sure to tell them that you are desperate.

[Bronagh2015 in reply to Bettz]

Thankyou Bettz, I'm just about to ring and see wh I can find out.

[Tracytrackerb]

Get intouch with them and explain how bad this is affecting you..its worth ago hun..hope things get better for you ❤xx

[Bronagh2015 in reply to Tracytrackerb]

Thankyou, just having others understand your frustration means so much.

[Tracytrackerb in reply to Bronagh2015]

❤

[Dedalus]

How very disappointing and frustrating. Good idea from Sonia about informing them that you'd be happy to take a cancellation if any come up x

[Bronagh2015 in reply to Dedalus]

Yes it was a good Idea and I've been told I'll be the first to be offered a cancellation. Thanks for your concern.

[Semibreve40]

Sorry about this disappointment for you. Lets hope there is a cancellation before 26th April so that you will be seen earlier.

[Bronagh2015 in reply to Semibreve40]

Thankyou 😊