Hospital Not Giving Me Any Information?!

[CheeseSandwich1]

Posting on AIBU for traffic

About 6 weeks ago I started with a significant headache that didn’t let up for 2 weeks. GP sent me for CT that came back normal. I was then sent for MRI. 3 weeks went by with no communication.

On Thursday I had 2 missed calls from Neurology Consultant and a voicemail saying to call back to book further tests. I call back and Consultant has left and won’t be back until Monday. I’m booked in for Antibodies blood test and a MRA scan of blood vessels. I ask what it’s for and I’m told only the Consultant can tell me this.

I was asked to come in to collect blood forms yesterday and have the blood test the same day. I asked again at reception is anyone can give me some information as to WHY I’m having these tests. I’m told no one is available and given a sealed envelope and told to give the sealed envelope to Immunology.

I ofcourse open the envelope and discover I’m being investigated for Vasculitis. A quick google search and it shows the Vasculitis affecting the brain can cause strokes and brain bleeds. I’m assuming the initial MRI is abnormal or why would they be doing these further tests?!

What I’m most concerned about is considering I’m being investigated for a significant autoimmune condition that causes strokes and brain bleeds; why has no one told me this?! I’m on high alert now panicking I’m going to have a stroke or bleed, I can’t even sleep at the worry as Vasculitis is really, really serious!

I don’t know whether to go down to A&E to get answers or leave it until Monday?! I’m on my own so no one to help if something goes wrong and I’m petrified!

But not everyone can pick up the phone when it rings. Many workers can't even have their phones by their side when they are working. Does the NHS not understand this?

Wouldn't you be a little hacked off if you'd waited six months for a consultation and your hospital consultant took a personal call during it?

The same hospital consultant or GP would think me very rude if I did that.

I think you’re wildly overestimating how much control HCPs have over their working day. You’d be better off chatting to the managers about your ideas….they sure don’t care what we think but maybe you’d do better with them.

and know, it hasn’t escaped us that patients have lives…..because we are also patients who have lives and have the same struggle everyone else does when it comes to our own health care.

And you are wildly underestimating the control workers have when they work outside the NHS.

Hi @CheeseSandwich1 I’m sorry you’re panicking. I haven’t read further but hope you’re doing better now. I wouldn’t worry about explaining why you didn’t answer - regardless of whether you were busy with the children, busy at work or don’t like answering unknown numbers, it’s really problematic that results from a significant scan (which an MRI is) would come in via unplanned calls that don’t leave an option for fairly quick follow-up. This is one of the pitfalls of the NHS. When you’re waiting for something that you’re worried about, naturally you will worry further when someone tries to reach you and can’t, and it’s unclear when you will be able to reach them/there’s then a significant wait. It would be better if the initial call was just about an appointment at a mutually convenient time to discuss the results. I’ve been in this position many times with scans and once with a biopsy. What others have said is right - if there was imminent danger you would’ve been called in quickly, but you have my sympathy about the general anxiety that this can cause.

Oh and @RosesAndHellebores in our trust yes the admin staff are allowed their phones on by their desks.

Once you’re referred on 2ww it’s down to the consultant to update you not the Gp. The Gp will only receive letters on what tests your having done and then the results after they have spoke/see you. Everything does not come down to the Gp and also if I was under a 2ww I wouldn’t be waiting 2 months for the results I’d be ringing whoever I was referred to or seen weekly until I got my results.

Hopefully they would never interrupt a conversation with a patient to take a personal call which seems to be what you are advocating.

Absolutely no we wouldn’t interrupt a conversation that was already happening. But if my personal phone rang with a No Caller ID I would step out and ask my colleagues to pick up my phone for me.

Because never have I had a No Caller ID call and it not be important. Scam/Spam calls these days show their number.

What do you think teachers do?

They get significant time off each year in which they can schedule and handle personal things. They chose that profession, and FWIW I always do my best to work within a teachers constraints when they are a patient within the service I work for.

But ultimately we chose the profession we do, and we have to schedule our lives around it. For example I try to schedule what I can for a certain weekday as I only work 4 days a week.

The NHS cannot ever suit everyone, there will always be someone who is inconvenienced unless they staff all departments 24 hours a day-and that is just not feasible.

So what you are saying is that the NHS is entitled to be inflexible but no other organisation or individual may be inflexible. I hope you would agree that if a teacher was given an appointment two weeks before the start of GCSEs, that the hospital would agree to rearrange it at the time of their convenience.

What do you think would happen to the education system if people stopped being teachers in case they had to attend a hospital appointment or receive a call from a consultant during a lesson? Do you think your son or daughter's French oral should be interrupted because their teacher has to take a call from an unscheduled HCP?

Stop being obstinately inflexible and start understanding that people, you know the twits who pay tax to receive a service only free at the point of delivery, should be at the heart of delivering that service and those responsible for it need to ensure everyone can access it.

I remember well asking to reschedule a maternity appointment when I was 34 weeks. We were burgled during the night before it and I was waiting on the police to come back to finger print. Would the hospital reschedule it. Nope.

God no wonder we can’t sort out the NHS in this country, the bum-kissing of doctors going on on this thread is shocking.

OP, it’s obviously not a good way to treat a patient. I’m so sorry you’re going through this and are so anxious. Your feelings are valid, ignore the mad people trying to pretend you’re unreasonable for expecting the health service to work.

OP - I am so sorry to read you are having such a hard time. I have also suffered with significant mental health difficulties and unfortunately would also struggle greatly with this.

If you haven't already, I really would urge you to reach out to mental health professionals. If there is a crisis team number that is great or if you are in England or Wales, there is 111 option 2.
I know they can't totally reassure you right now but they may be able to help a little.

Wishing you well when you speak to your consultant tomorrow.

Consultants call from their own office number hence it’s called withheld. Otherwise some patients would direct call them every day. If it was life threatening then they call the police request a welfare check. The police come to your home to tell you that you need to present to A&E immediately.

We often do, and people still don't pick up. I am more specific, giving a 30 minute window, as i appreciate people have busy lives, but still sometimes dont get through. The patients who genuinely need to contact me, I have given my work email, with the caveat that of they don't hear back from me within a few hours then to call our admin team and another clinician will try to help if I'm not available. We often end up playing phone tag with patients, and we don't have time for that, so if I can resolve a query via email that's much more efficient. But some conversations are not suitable for email and do require a phone call.

The problem with this is yes we can text to say consultant will call between say 2 and 4. But then a medical emergency comes along as said consultant can’t then call in those hours. This happens a lot. Emails are not encouraged by NHS due to security issues. That’s why consultants tends to keep trying as much as they can within their working hours/other duties. Admin staff are allowed their phone. Why wouldn’t they be allowed them?

The NHS does not have the funding to be flexible.

Of course a teacher (insert other profession as appropriate here) should be able to reschedule and as far as I am aware they can and do.

I also pay tax you know. And I do my job to the best of my damned ability with all the heart and compassion in the world…but I am not payed beyond 4pm so delivering the service to the best of my ability to ensure everyone can access it is a bit beyond my remit if Jayne in Pontefract can only access it from 6pm - 9pm in the evening. Unless you are saying I should give up my free time and work unpaid so that Jayne in Pontefract can get what she needs from me??

Sorry but I agree with this. Neurologists are incredibly busy people. Clinics a fully booked for months.

Yes patients can change their appointments either by phoning, going online or replying to the text they get reminding them about the appointment. Although sometimes there is no available slot to put them in when the patient wants to be seen.

How about behaving like any other professional?

If I have a missed call from my accountant, my garage, my dentist, my insurance broker, etc, etc, then I can ring back and either speak to the person who rang me or leave a message for them to try me again (with the promise that I will have the phone to hand).

In my experience NHS professionals try you once and if you don't pick up that's it you've missed your chance and have to go through a HUGE rigmarole to get back to the faint chance of catching a random phone call. It's an appalling way to behave; it's inefficient, it wastes my time and theirs (both clinical and admin), it injects delay, and it's RUDE.

You wouldn't run a business like that! But of course we patients are not customers in this context.

You can ring back. If you are under investigation then you know the consultants name. You can ring and ask to speak to their secretary. They will then pass a message onto the consultants. Unfortunately consultants don’t sit at their desk all day. They may be in clinic with other patients, visiting patients on wards, seeing urgent cases that have come into A&E, or attending meetings. Therefore it can take a few days for consultant to get to see that message, let secretary know new day and time and that secretary to then tell patient.

I can only speak for myself, but if I am trying to contact a patient I will call all numbers on the system, leave a voicemail AND then send a text telling them to call me.

I understand not all are like that and I am sorry if you’ve experienced that. However the NHS is chronically underfunded and understaffed and sometimes this shows in ways we’d rather it didn’t.

To be fair, I have had similar to you from GPs and consultants. Call, voicemail, text, email - all 4 arrive within minutes, but the issue is that if I'm on a work call then I still won't see nor answer until the end of the call. Leaving a text "will try to call again at x time (atvleast 2 hours away) or ask reception for another slot on 0207xxx" would be much more helpful, as I might be able to reschedule something later.

Don’t be ridiculous. If they don’t give you a day and rough time that they’re going to call, it can be difficult to be able to be available, unless you literally sit around all day doing fuck all. People work, could be driving, caring for a child, hsv7ng an shower etc.

We have to be careful about what information we leave in a voicemail/send in a text. We are taught a lot about coercive control etc etc. A good admin staff member of the NHS should only leave a message stating where they are calling from and a return call number.