I was booked in for a phone consultation to start a new drug because Benepali was causing drug induced Lupus. They were over an hour late calling me, so I was on the phone to the hospital to find out if the call was still going ahead when I missed the call I was waiting for... So now they've rescheduled to the end of November! Covid aside, I think that's appalling for a phone call & I'm so angry that I wasn't given a call back considering they were the ones who were late. Do I complain? It almost feels like a punishment for not answering. I can't explain how stressed and powerless I feel & the RA is just getting worse. So I'm to be left in agony?! Or unnecessarily take steroids because they can't stick to a time. I rang them twice after the call was missed & they still couldn't be bothered to ring. How is this fair?!
Irritated! : I was booked in for a phone consultation... - NRAS
Irritated!
Write and complain politely. They obviously don't have a system to cope with running late and need to set one up. And give you an urgent consultation...
I agree with oldtimer. I’m find myself very frustrated with the nhs at the moment
I'm so sorry to hear this and as oldtimer says they don't appear to have a system to cope with running late and I think it is very much needed. A couple of times when I've had telephone consultations which have run late you are frightened to move or may need the loo, so what are you expected to do. If you were in a F2F consultation you would know the GP or consultant was running late guaging the people in the room or a nurse may say or it is physically displayed, but on a telephone consultation it is hard to know and how long do you get to answer before they ring off. Hope you manage to get something sorted soon. Take care xx
Thanks for replying, needed to get it off my chest. It comes down to bad management by the sounds of it. Where has the caring NHS gone.. I think I will ring the PALs number & explain what has happened. I can't believe how down it's gotten me and to think how many other people are suffering, it's despicable
I would complain too SarahJane. My phone call from rheumatology came 90 minutes early, which I missed. I called the rheumatology secretary and received my call at the correct time. It is very stressful if the call doesn't come at the said time, as we have no way of knowing what is going on.
I wish you well.
It's not surprising you feel down especially when the phone call was so important to you. It's bad management as Pip says but it's also bad manners. I would ring PALS as you say and explain what happened and how upset you are. The least they could have done is ring you back after you had rung to explain. There's really no excuse for that kind of treatment. You struck a chord with this one as my husband waited all day for a call from the hospital respiratory department a couple of weeks ago which never came.
How awful, I'm sorry to hear about your husband & I hope you resolve it. Yes it does feel bad mannered, it was a Friday as well so half the frustration is getting by the weekend
I missed a call as I was told it was a hospital visit. I was so angry after the effort and stress it caused so contacted my consultants secretary and they had it sorted that day. So go higher and make it happen as the stress hurts the body too.
Thank you, I'll definitely give them a call Monday morning!
Sorry your having to experience this I have also been in similar positions. While waiting for a simple phone call appointment my joints were so bad. You should definitely complain, but also speak to your Gp and ask them to send a letter to the hospital or call explaining how urgent this is and keep calling them. I’m not sure if you have a Rheumatology nurse at the hospital who you should be able to contact.
Best of luck
So sorry to hear this. I would definitely get back in touch with the hospital as it needs resolving for you now and you not having to wait until the end of November. Do let us know how you get on. Definitely speak to the hospital again on Monday. I work within the NHS myself and find that just trying to navigate the systems and support the patients I am in touch with is a mind field and changes all the time. It really frustrates me when I hear the news saying the NHS is open as this message is very misleading it is certainly struggling to operate as it should or wants to and it is having a real impact for patients and staff alike. xx
Thank you, I'm definitely trying to stay aware of how hard everyone has it at the moment, I'm in the dental sector and it's completely shot. I will be updating if I get any luck 🤞 xx
No matter how broken the system is though lovely lady you and everyone who needs access to health care should be able to have it. So sorry if my message came across as trying to highlight the pressures the NHS is under. It is so sad that it is of course however I struggle myself daily with what kinds of things are happening both for my patients I work with and myself. I am so lucky to have such a fantastic supportive rheumy team and health professionals around me for which I am so appreciative of. I have recently had a very negative experience with my own GP surgery though sadly and some of the conversations I have on behalf of some of my patients really has made me very cross and taking all my energy to remain professional. I really do hope you have a positive response and way forward. I am so rubbish at putting my thoughts in words. So I am so sorry if I came across as unsupportive though. Keeping everything cross you get that much needed telephone consultation xx
No don't worry it didn't, everyone's response has been really helpful and I feel much better about it all. I'm grateful for you sharing your experience & for your support xx
Not rheumatology but needed to contact 111, then GP , then specialist nurse who contacted Consultant's Secretary and arranged for
my husband's Consultant to ring us between clinic and a meeting yesterday for advice over a worrying post up complication. Still waiting!!!!
I know it is hard for the NHS at the moment and I am a great supporter having worked in it but where can you go for help these days?
How awful for you and your husband 
I agree completely, it seems know one knows what's happening, leaving people feeling anxious. It's horrible to feel so powerless ontop of everything else. I hope you hear from them soon x
Thank you. Just pointing out it isn't just rheumatology . Just wish it would all get better soon but that's a gain hope I think
Think about it ....if you were on your telephone consult getting off your chest what you really wanted to say .........would you appreciate it if your doctor said I’m really sorry ...but I’ve got to go now now ......and you are left hanging there?
With telephone consultations you have to allow leeway ...and this time you were the one kept waiting- next time you may be the one getting the attention.
You have got it off your chest here why not just forget it?
You might be needing these telephone consults for a long time ...so try to relax and understand the state the NHS is in ...not only for RA, but for all those unfortunate people suffering with Covid,
Why start up all sorts of complaints.....which will drag things out....move on,...& make sure you make of note of everything you want to say when you do get your call.
If you have a rheumatology nurse why don’t you try giving her a call and see if she can offer you some help .....she might even be able to fit you in a call before November.
You should remind the nurses they are there to advocate for the patient. They are your representative when your not there. How difficult would it have been to call you and explain the clinic was running late. I have waited 4 days for a call back that still didn't happen.
I spoke with the lead nurse and explained how frustrated I was on top of feeling ill. I had the appointment I needed rescheduled on that call. The lead nurse is now ringing me back after each blood and personally arranging appointments for me. I think it easy for the nurses to hide.. There main role is to advocate for the patient, push them to do this for you.
I
Thank you for your advice, a few people have mentioned lead nurse or the secretary which seems to being results. I'm glad you were able to get sorted x
My take on this is that the most important thing is that you're in pain and need to start a new medication as soon as possible. I would ring on Monday and explain that first of all; it's worth being placatory in the first instance if it gets you to speak to someone as soon as possible. If a good result isn't forthcoming, then politely point out that you only missed the (very late) phone call because you were ringing to see if you'd got the time wrong. If that doesn't work, it's time to complain!
Thanks Boxerlady, I'll definitely be taking this avenue! Hopefully I'll get a quick resolution so it doesn't come to a complaint!
I'm very f'd off with the service I've been getting. 2 months I've been feeling like total s**t. I was told I needed vitamin and thyroid checking. After chasing blood forms for a month, then once I finally got them had to wait 2 weeks for a blood test appointment. Got phoned yesterday with the results to say they didn't do the right tests and I have to go through it all again. I'm staying angry because if I don't I'm just gonna cry and might not stop.
I'm so sorry you're going through it Angjoplin & I know exactly how you feel. I've spent the past 2 days angry and crying, I'm still not feeling myself now but everyone's replies, support and advice has made me feel so much better. I hope your tests are sorted for you soon & that you begin to feel better ♥️
Hi SJ, please don’t “forget it” and wait and wait and go downhill. End of November is too far off and I don’t think anyone here would really want to wait that long either. I had to wait for my overdue infusion for seven weeks for no fault of my own in 2015 and I tried to speak to someone but an admin woman blocked me three times and I ended up in a sorry state and on oral steroids for ten months and on oral morphine for the summer. My GP got involved as the whole scenario was too silly with too many hospital staff trying to deal with it in my own nurse’s absence for three weeks. Basically if she goes away on holiday everything goes very out of sync. So unfair on her. She should be able to have her annual leave!! You haven’t done anything wrong and was available for the call. They were at fault as such. No one expects a call to be exactly at the stated time, but to then postpone you to so far ahead?? 😑
I’m sure the majority of people here wouldn’t want to sit back and wait to the end of November and not be proactive given if they had RA flaring, so don’t feel like you are inconveniencing anyone if you want to chase up your call. You’ll be much harder to treat if you go downhill so please make sure you don’t, and you can voice your concerns over what has happened without causing huge waves or any bad feeling. Hope it works out. Maybe your GP could assist if you get no joy. Good luck.
I waited all day yest after my appointment was cancelled last week ,it was for orthopedic.
However no phone call all day on the mobile or the home phone as I was in the whole day and like that was frightened to use the phone just in case . I think the consultants are getting an easy ride on the whole covid thing. Think about how quickly there on and off the phone ,and instead of seeing up to 30 patients a mor/afternoon there Not there seeing emergency only patients and I think they should be doing more in all fields. Sorry for the rant like that I'm annoyed because they disnt phone yest ,but I didn't turn up for appo be a different story .
I absolutely get your rant! And I agree, I was so annoyed because how much effort would it have taken them to dial a phone number again? Especially given a lot of clinic's are empty or certainly emptier than before covid. Have you heard anything since?
Yes Sarahjane I got my phn call ,but again I stressed on the phone That if consultants cant phone patient back ,why are they given us false hope ??
And again I got the whole oh it's a bad time !!!!
Well guess what I would rather be a consultant doing part of my job than None of it ,at least tey set up Video calls ???? Why not it does work ,so what are they doin with all the time they have on there hands ????? The answer I got was.......I simply cant answer that .
I rest my case consultants get what patients are goin through try doin something about it . Because the longer it goes on the more we Suffer ......Not Good for anyone .
Sarahjane926 the whole nhs seems to be going into meltdown. Even trying to get a callback from the gp is difficult! The receptionists have suddenly turned into horrible, cheeky people! Im lucky enough i got a face to face with my rheumy a couple of weeks ago. I was in hospital 6 weeks ago with falling haemoglobin levels and had 2 transfusions. Also a endoscopy. Let out of hodpital they said i was on urgent list for endoscopy and it would be 2 weeks top. That was 6 weeks ago. Trying to get bloods done at the gps is a nightmare. 2 weeks i had to wait for an appointment in treatment room. I live in northern Ireland and although covid is bad at present (we are on 2 week lock down) i feel for cancer patients whos treatments have been suspended. I dont know when this is all going to end. Definitely ring the Secretary and complain and get your telephone call u need and have already waited for xxx
I have been angry since before COVID 19. I told my GP that every time I required some kind of medical care I felt like I was suiting up to go into battle. It was difficult before COVID but now it’s worse. I could go on...
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