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!

If they have found inflammation, it is likely at a very early stage, especially as it was not visible on CT scan and you only had a headache for a short time. Chances are medium of you being given pills like steroids. It isn't the end of the world, it is a marvel that modern medicine can help. If you get all silly about it, you're just making a bad weekend for yourself and your kids. You need to stop catastrophising about something most likely extremely minor and get on with your day; play with the kids, get some good sleep.

Well yes, in theory. But in my experience of you open and read a sealed envelope which was meant for another medical professional, when you have no idea of how to interpret the information in it, then you deserve all you get. There’s a reason it was sealed. It wasn’t meant for OP to read - for precisely the reason that’s become evident here. She’s googled, still doesn’t understand and can’t find reassurance and now she’s spiralling and blaming everyone at the hospital for not giving her the information she wants immediately. She’s now worrying excessively, and probably needlessly to the point where she’s cancelled her weekend plans and she still has to wait until monday.

The NHS app and other individual hospital portal apps won’t give results until the consultant has discussed them with the patient.

OP is spiralling because she chose to ignore phone calls from a consultant

Op has clearly stated on several occasions that she missed both calls, one immediately after the other, because she was seeing to her young children at the time. She didn’t ignore them. As soon as she could, she called back.

I work in a hospital. The consultant would have spoken to you if it was anything urgent. Call your consultant on Monday to ask him. But meanwhile stop panicking although I realise this isn’t always easy.

That’s true. But I imagine most people in that position who didn’t understand what was currently going on would open the envelope.

You’re spiralling, and in a way that won’t be doing you any good.

Do you have a plan for what to do if your mental health starts to deteriorate? It may be a good point to put that in action.

You need to sleep

My problem is the majority of my psychosis symptoms show as me panicking something is wrong with me; specifically growths/swellings that I feel are poisoning me.

Obviously my psychiatrist and nurse would say ‘you don’t, there’s nothing medical to say you do’ BUT now there’s actual evidence that there’s something very wrong so I can’t rationalise.

In my mind it’s best if everyone forgets about me, moves on with their lives… I have been in a situation where I’ve been so mentally unwell I’ve not known where I am/what date it is/genuinely convinced I am poisoned etc. I can’t imagine having a psychical illness that effectively stops brain function as I know what it’s like to lose temporary brain function. I just can’t cope.

Children are with their Dad and I’m just researching, putting things into place as I would never take medications that could poison me further. So if I have it I will die soon.

You really don’t know that there’s evidence that there’s something very wrong though. There could quite easily be nothing interesting at all on the scans so they’re just ‘crossing the T’s and dotting the I’s’ and excluding all the rarer stuff with the bloods.

it sounds like touching base with your psych team would be a good idea for some extra support.

OP, I am so sorry things are panning out like this. Have you got anyone you can call, midwife or any other health professional? You only need to get through tomorrow until you can get a fuller picture from the consultant. Hang on in there.

OP you need to contact your mental health crisis team.

If you have visitation scheduled with your children before you speak to the neurologist, arrange to be supervised if you are concerned about something happening when you are alone with the children.

But stop googling.

I am not a neurologist, but I do know a bit about this sort of thing. The differential when you see inflammation on an MRI scan is quite large and can vary from something very minor (eg migraine can cause changes on an MRI) to things that are a bit more complicated. The blood tests are to rule things out to try and narrow the cause down, so they don't necessarily think that you have vasculitis and even if you do, it can be treated. Please be warned that it may take some time to work out exactly what is going on. It's actually quite common to find non specific changes on a scan that eventually turn out to be of no consequence so please try not to worry.

It's unfortunate that you missed the call from the hospital, but I think it's a bit unfair to say that they aren't giving you any information - they did try and you can contact them again on Monday.

You need to try and manage your anxiety around this in the meantime - spiralling and not sleeping isn't going to help matters so I would consider contacting your mental health team.

Good luck - I hope it turns out to be something minor

If they needed you to come in the consultant would have handed it over to their team to get you in.

You will not die, because you love your children and you understand that taking any recommended medication will allow you to be healthy for them. You say you have psychosis, so you know this is your anxiety leading rather than any logic; call your mental health team or just call 111 and ask for someone who can help you to talk this through.

If that were a material probability they'd have put you under supervision if not admitted you? Surely.

I'm not trying to sound facetious but panicking is probably the least helpful thing you can do. You need to take active steps to calm yourself down.

Still no excuse to speak to somebody in that way. It’s best not to sound like you’re enjoying it when you’re responding to someone as worried as the OP..

OP please contact your mental health team.

What techniques have you worked on to manage your feelings when you are triggered?

If it was truly urgent, you would have been told to go to A&E. Please do your best to just live life as normal and just look after yourself. I have metastatic cancer. It’s an aggressive one with a high ish mortality rate. If something is truly an emergency, they will sort you out. It’s normal to wait several weeks for scan results (2-3 weeks currently).

But if there is something worrying that pops up, they tell me to come in right away. Like literally get in the car, drive to the hospital and admit myself straight to the ward. If there is no bed or no staff capacity, they tell me to go right to A&E. It can be 10pm, someone will ring me and tell me what to do.

When they’ve needed to give me urgent results, they get me in next day or tell me to come right over.

I’d see the fact you’ve been asked to just carry on with investigations as a positive thing. They aren’t worried about you getting on with life. But they’ve sorted out the next steps which is all really reassuring. Those results will come back quickly and you will have an answer.

But look after yourself. Don’t google. My cancer has a 60% 5 year survival rate. I was convinced I was going to die within a year. I started planning my children’s birthday cards for the next 70 years because I was sure I wasn’t going to be here. It was very scary. But I needed to back away and take care of my mental health. It’s been a year. I’m not dead! I’m doing great and don’t think I’m going to die anymore and am optimistic about the future.

Hmm? Respectfully, when giving a letter for somebody else to deliver by hand, traditionally the correct etiquette is not to seal the envelope. If the deliverer must not see the contents the letter should have been delivered by an alternate route. Email makes this very easy nowadays.

I wish health professionals could understand that some patients have professional, demanding jobs or just jobs where they are not alliwed their personal mobile and cannot take unscheduled calls.

For me that might be a formal negotiation meeting with a trade union, a disciplinary hearing, a research appeal, or meeting of the executive board. In some meetings I can say "I'm expecting a call from my doctor and might have to hop off for five minutes" and that isn't a problem. Some meetings, I simply can't do that. If I'm in a meeting, I can't leave it to take a random call. If I'm working to deadline, my personal phone might be off and in my bag - and I am senior enough to have agency.

I just wish health care professionals respected the time of patients to the same extent that we are expected to respect their time. Also, when patients are at work, they have a contractual obligation to be working and might have to seek their manager's permission to have their phone on their desk rather than in a locker. DD cannot leave a class of 22 15 year olds to take a phone call and certainly can't have her phone on ring in a lesson - when part of her role is policing pupils and sm.

It would be nice if some mutual understanding prevailed.

I will counter this…when should we/they ring (I say we as hospital admin staff). Should we stay past our hours just to suit your timetable/schedule? should we come in of a weekend when we don’t work to call you? How do you see this playing out when the majority of admin work 8-4 Monday to Friday?

Is it not possible to send a text or an email to let people know when the Dr might call? Also, I don't think 8-4 suits patients particularly. Operationally your service needs to meet patient need. Why can't admins work staggered hours on a rota: 8-4; 9-5; 10-6?

Are hospital admin allowed to have their phones switched on, at their desks? I hope not.

In our trust - text message can be done yes, email is generally not encouraged. As far as our trust is concerned core office hours are 8-4, the only department that generally goes beyond that is the appointments team. The counter argument is that we are there to meet the needs of the patients, but how do you meet ALL the needs of millions of patients (if you count the NHS as a whole) without putting too much strain on the budgets for shift allowances etc, after all the budget only goes so far. It is impossible to please all the people all the time.

What shift allowance. Surely core hours should be 8 to 6 and no individual member of staff is expected to work for longer than 7 hours.

A key issue for the NHS is that it revolves around the needs of the staff. No other institution/business does that.

This is why i tell people to pick the phone up when it rings you never know who it is.
If its a scammer switch off and block.