Hospital Not Giving Me Any Information?!

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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!

On Thursday I had 2 missed calls from Neurology Consultant

This was where they were wanting to discuss your results, investigations and treatment. The consultant is the person who can discuss the results, further tests and treatment, not the receptionist or an A&E Dr.

Wait til Monday and speak to the consultant.

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?!

They called you twice and tried to tell you but you didn’t pick up. What more do you expect?
Going to A&E is pointless, why would they tell you anything when you can wait for your Consultant to get back on Monday. You opened a sealed envelope so your own choices have created this anxiety.

I understand the Consultant is the only one that can speak about it. It’s the fact they’ve left me Friday and all of the weekend with no answers. To then give me a piece of paper which clearly states what they’re investigating me for! Which has then made me really really panic.

I have 2 small children, one is pretty much newborn. The calls came from no caller id and I was busy trying to sort my children out.

I feel like most people would open an envelope when know one is telling them anything about their own body and health.

I’m most concerned about having a stroke or brain bleed over the weekend and having no one there for me, dying and my children being left!

They'd have told you if it was urgent. They'd have left a message, or kept calling,

A&E will not give you answers from a scan that they didn’t request and have nothing to do with.

Ok you need to calm down. I work in a hospital. If we think there is a high chance of an imminent adverse event we send your gp or an ambulance to your house and you have 20 missed calls. Not 2. Vasculitis is a very broad ranging condition. Call your gp on Monday and explain you are freaking out. Do the same with the neurologist. They will respond.

Very sorry that you have waited so long to hear from or speak to a specialist about your MRI findings and that you were not offered an appointment/call to do this. Understandable to be v worried.

Others won’t be able to explain the findings to you under the hospital’s protocols. If the specialist thought immediate further action was needed other than the recommended tests now being initiated they would have taken or requested the action.

While I understand your worry, would actually knowing make any difference? If you're that concerned make plans for your children for if anything happens at any time.

Ok, I will try to calm myself a little. I had a really difficult pregnancies and with my first was treated very badly (medical negligence and legal involvement) by the same hospital and was very unwell as a result. I just don’t have much trust in them now. So in my eyes that could happen again!

I’ve spoken to GP and all they say is due to nature of the situation they can’t disclose anything.

Do you think the medics should be on duty 24/7 in order to be available for every person they are dealing with? Would you have preferred them to not have given you the sealed envelope?
You should try to be calm about this - they’re not testing to confirm, they’re testing to rule out. Or at least that’s always the way I look at these things as it makes me feel less anxious.

If there was a genuine chance of stroke/brain bleed I’d get myself down to A&E! I’m late 20’s so I really don’t want to die and leave my babies behind when something could have been done.

I feel like most people would open an envelope when know one is telling them anything about their own body and health.

I understand where you are coming from but the letter wasn’t addressed to you and thus was written with only the intended recipient in mind (a medical and diagnostic professional). The nuances and explanations that the consultant would have conveyed had they spoken to you, would have been very different.

It is unfortunate that you missed the consultants calls and it is unfortunate that this happend on a Friday and the consultant won’t be available until Monday.

I understand your trepidation but there’s nothing worrying can change about the situation.

For future reference- pretty much any call from the health services come from unknown numbers as they come through switch boards. Some put generic local health service number to appear as calling from. Others just unknown.

You are no more or less at risk than you were before you opened the envelope. If they think you might rapidly deteriorate they admit you.

If you’re a single parent, with this number of tests it might be worth channeling your concern into something productive and have contingency plans in case you need admitting for longer tests.

OP you have my sympathy, I was on a 2 week pathway scans and bloods for ovarian cancer, the GP 2 months later hasn’t called me to give me any update. Luckily I was able to login to the app see my CA125 results were normal and the scan lady said all looks good. BUT the GP has not even messaged.

I’ve also spend my whole life life with endometriosis being gaslit, so I do understand wanting to know is totally normal and the panic when you are not told anything

I ofcourse don’t think doctor’s should work 24 hrs a day. I do however think I quick call to update me from a professional in Neurology at some point yesterday would have been helpful.

If the hospital staff were so set on not telling me what I was being tested for they shouldn’t have given me an envelope with the condition plastered all over the letter.

I understand my reaction might be severe but it’s due to the negligence that occurred during and after my first pregnancy; I nearly died as a result of their treatment (or lack off).

I’m so sorry you experienced that and glad your results were ok! I know I wouldn’t be so panicked if it wasn’t for nearly dying under the same hospitals care a few years ago. But when it’s happened once you think? Could it happen again?

If there was an imminent threat of something happening do you not think that they'd have whipped you in instantly. So it's unlikely that something will happen over the weekend.

The point I was (badly) trying to make was noone can foretell the future and you've now been made more aware of your own mortality, so regardless of the cause, perhaps you should make some plans. And it might take your mind off your situation.

I don't mean to sound unkind, sorry.

They called you twice! Take some responsibility. If you are so anxious, why didn't you made sure to be able to answer the phone?

I’m not a single parent, I’m just on my own this weekend. My children’s Dad is aware of the situation and is there to support for my upcoming tests.

I’m just emotional because I’m panicking I’m going to lose brain function and/or die.

Thank you for your input, I genuinely appreciate all the replies.

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.

I wasn’t expecting a call and I was busy with my children so didn’t think anything of it.

As another pp said, at this point they are mainly trying to rule things out.

And as yet another pp said, nearly all medical/hospital calls come from unknown numbers so just answer them. I've never understood this fear that your generation has about answering the call to an unknown number.

And as another pp said, you need to make plans for your kids anyway, in the event that something awful happens to you.

I hope everything turns out to be ok though. Try and put it to the back of your mind now. Have you got something nice planned for the week-end?

Because then it wouldn’t be someone else’s fault….🤷‍♀️ God forbid we’ve to take any responsibility for ourselves nowadays!

I’ve cancelled our plans and staying in. I can’t take the risk of something happening when out doing something. I can’t even sleep incase I die and there’s no one here!