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!

OP, try to calm yourself down.
Absolutely the worst thing you can do is cancel all your activities and sit at home fretting. You need to get out with the kids and give yourself something else to think about.

You said yourself:
"After 3 weeks I genuinely didn’t think anything would come back from the MRI. I was always told significant things are reported on with hours/days"
Try to hold on to that thought. Also PPs have pointed out that if there was any immediate threat (or concern) the hospital would have gone straight to your GP or asked you to go to A&E.

Everything will get sorted out on Monday and you will be laughing at yourself for panicking so much.

Never not shocked seeing how people think it’s reasonable to talk to worried people on here. FFS.

@CheeseSandwich1 I have some sympathy as I’m currently awaiting a CT and neurologist review, however this situation is all of your own making by opening the envelope and not answering either phone call.

Your mental health is obviously precarious and I would encourage you to get your DH home and get some mh support as a priority.

Apart from that, you need to wait until Monday and keep your phone with you and on full volume. As you have such severe anxiety around your health, and have young dependents, have you got your will in order and power of attorney’s registered? That might provide some reassurance in the very unlikely case that you are extremely unwell and unable to make decisions for yourself.

I was investigated for Vasculitis - didn’t have it. The blood test will give more info.

ffs - you want to be seen by a consultant that works 24/7 - have the results read to you by a receptionist, who may or may not know any more that you do about what you've jsut read?
you are being given appointments speedily, speak to the consultant on Monday

Because sometimes people need a bit of a shake and a reality check. OP is spiralling because she chose to ignore phone calls from a consultant, then open a letter she shouldnt, then use dr google and complain about how a consultant isnt available at her convenience...... instead of just waiting for monday.

This is a woman who knows she has a significant MH history so should have avoided doing all of these things. Now shes complaining as if the NHS are gate keeping her medical info, whilst saying shes going to deliberately not sleep or leave her house (apart from to turn up at A&E). If ever someone needed a reality check and not a hug its this OP.

You're spirally OP. If it was immediately urgent or immediately a risk to your life the hospital would have you in.

I had a serious life threatening diagnosis a few years ago. Around 6.30pm I was putting my kids to bed and my phone was blowing up. But I was elbow deep in changing a baby and a toddlers dirty nappy and my husband was at work for a night shift. The consultant must have rung my phone 6 or 7 times before I answered and he sounded panicked when I hadn't answered..

Long story short, I was fine but it does show if there really was an immediate risk they wouldnt be leaving you.

Maybe dont read private letters in future..

If it was urgent they would have kept calling you or even sent an ambulance round. The fact they didn’t means they don’t think you could have a stroke over the weekend.

Hi, OP. I’ve read your posts, and appreciate you’ve had issues with this hospital in the past hence concerns on trust. But just to say that if the consultant was concerned there was an imminent risk this weekend, they have protocols and would’ve persisted with contacting you and eventually sent an ambulance to the house if necessary. This happened to a neighbour (post covid - so even under NHS strains) - she had no idea why they were there until they explained. Appreciate it’s worrying, and you’re on your own, but the very best thing you can (try to) do, is continue as normal as possible - get some decent sleep tonight. Putting the condition to one side, because I’m not medical - our bodies need good nutrition, hydration & rest to function well, and these are all simple things you can focus on until Monday.

This.

OP sounds like she is heading back into OCD/psychosis—stopping sleeping is going to tip her over, frankly, into a very serious relapse. Please call your psychiatrist and self refer.

She said she was busy and didnt get to it in time!
Should i answer my phone when i am driving..in case its important ?

Dear me , everyone doesnt have a phone surgically attached to them 24/7

I think people have ridiculous expectations of the MHS, and this is one example. It’s fine you weren’t able to answer your phone. So wait until tomorrow.

Med sec here….admin staff DO NOT discuss results over the phone. And when you phone you will always get a member of the admin staff.

Quite frankly we know what the mri shows, but we ARE NOT medically trained and therefore we say nothing. Please take a moment to realise that no good will come of you get angry with them, begging them or any other thing you may try to do.

We can get ourselves into a lot of bother if we give results out over the phone.

Hello , I was investigated for the same.
I was very worried .
Very scared.
Over a year I had on and off tests and they found an AVM , 6 months later I had a quick procedure to remove it in a specialist hospital, they said if you scanned everyone in the world , half would have an abnormality like we have birth marks , freckles and moles on our skin.
My choice to remove as I was 30 with two children and it was what the doctors thought were best.
It could turn out to be something very very minor , nothing at all or something that they can deal with swiftly but I know how worrying it is.
I think doctors have to be more open now and gather information from colleagues just incase, to cover themselves.
I know waiting at the weekend too is the worst .
Thinking of you ❤️

Have you git the NHS app there may be some information on it. Try not to worry if it was urgent they would of sent an ambulance. They may of been calling to request bloods from you anyway. Take care x

Where is your husband?
Can he come home?
I'm sorry that you are so worried, I firmly believe that you have no need to be, as others have said, if anything was going to happen imminently you would have been called to hospital (one way or another)
Take care

I always answer No caller ID numbers. Much higher likelihood of being something really vital than unfamiliar random numbers.

Then gently. You shouldn’t have opened the envelope - that’s why it was sealed. Just because you’re being investigated for it doesn’t mean you have it. You missed the calls so you have to wait until monday. The consultant is the only one who can discuss it with you - these things are beyond anyone else’s’ pay grade.

But this poster is right - they could have put it more gently I agree, but basically OP has opened a confidential envelope and scared the wits out of herself unnecessarily. They may be investigating it, but that doesn’t mean she has it. And no amount of chivvying the hospital staff to tell her what’s happening is going to work - the consultant is the only one who can discuss it with her. It’s beyond anyone else's pay grade.

Cancelling activities that would have helped pass the time? Do consider counselling to deal with past trauma

If you really think you are at risk of death then why hasn’t your partner come back?

Please don’t ask people on the internet to second guess your illness, its level or the possible treatments and outcomes your consultant might offer you! Because whatever they say will probably not apply to you.

As others have said, if the department were at all worried that you needed to be seen immediately they would have made sure you were spoken to.

I know you are worried, but your health and diagnosis is exactly the same as it was before you got the missed calls, nothing has changed except that you are now working yourself into a panic.

Frequently, consultants will try to fit in phone calls adhoc whenever they have a few minutes as soon as they receive the results.

Alternatively you can wait a week or two for a scheduled telephone appointment in a session with admin support organising appointments at a time when it suits… There has to be time for a letter to be sent.

I wish people expecting to hear from healthcare professionals would answer the phone ! These days I usually have to call at least twice or three times before someone answers.

No perfect system I’d afraid.
OP you don’t need to go to ED. There are quite frequently Incidental findings on imaging of things that could be Vasculitis . Your consultant may well just be being thorough and dotting is and crossing ts.
You don’t need to stay awake or worry that you will have a stroke.

Don’t waste A&E time wait until you can speak to the person who ordered the tests.

I mean I disagree. Anything to do with my, my medical history, my body, I have a right to read.