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!

Just looking in to see if the OP has managed to speak to someone this morning.

There is no power balance though is there ? You are the patient and you have to accept whatever phone/face to face appointments are available at the convenience of the doctor. There is of course, no excuse for the staff being rude to you but beyond that some of the entitlement on this thread is batshit.

This

Not sure what you’re after here really. I don’t think your last sentence reflects in the least the attitudes of health care professionals I’ve dealt with.

I disagree. To see my solicitor and accountant, a mutually convenient appointment/call is negotiated and their staff are always friendly and helpful. They are also professionals working under high pressure.

I will change arrangements where I can but just like medics sometimes I can't. I am also messed around far more by the NHS and doctors than by any other professional.

If a Dr cancels an appointment with me and sends one I.can't make in its place, the letter comes with no apology and it can take 45 minutes of my time dealing with call menus and phones to be answered to rearrange it. If I have to change an appointment I apologise. I am never late for a medical appointment and allow for a 60 minute delay.

I have sat in the waiting room and after 15 minutes, the whiteboard has changed to a wait of 30; after 40 to a wait of 60, after 65 to a wait of 90. At which point I have had to rearrange the appointment and despite politely explaining I can't wait any longer, get the curated eye roll.

You undoubtedly will think that is satisfactory. I do not and I think the NHS would get a higher rating if there were at least to offer some apologies and respect for patient time.

At the crux of it is the fact that it is free at the point of delivery. Many NHS staff think they are providing us with a free service and doing us a favour. Not so. In most other sectors it would not be tolerated.

Like I said. The entitlement on this thread is off the scale.

I'm not after anything, I was answering your question (which was "what's the solution....").

I do appreciate the stresses and time constraints that health professionals have to deal with. But to hear it repeatedly trotted out as a "get out of jail card" to excuse nonexistent customer service gets tiresome.

If, from within the NHS, you think it is entitled to expect an efficient, respectful and courteous standard of service, there really is no hope.

If staff in my service, different sector, were as cavalier in their dealings with customers/service users/clients, disciplinary action would take place.

Hi,

I had CT, MRI and ultrasound on my noggin all because of pulsatile tinnitus. If you look that up, it's very scary and can be as a result of an impending aneurysm, tumour etc.

This was mentioned to me at a GP appointment, during covid, when I thought I just had impacted wax to then see my GPs eyes widen with fear and illicit an immediate referral to neurology.

Once there, I saw an ENT, neurologist, head radiographer and spoke to people in the UK and internationally.

All of this to say that, if they thought you were in genuine danger, you would not be getting missed calls from a consultant. Some things can be an issue, if not resolved, but these things are not an issue that could kill you at any second that you're left to the mercy of scheduling before you are told, if that makes sense.

In my case, there are 3 brain reasons that could cause my problems, and I have all 3 but none of them fatal. The scans ruled out the serious ones but they weren't all ruled out in one day and I'm here and alive and well.

You'll be okay but I know it's scary. I had all the same thoughts as you. Stay strong and distract yourself until Monday, if possible. Hope this helps x

Can people please leave the op alone. Read her posts. She’s really struggling and the bickering and sniping about the nhs isn’t helping.

I’ve spoken to Neurology secretaries this morning and my consultant is calling me back today. I don’t know what time, but I’m keeping phone on me at all times on loud.

Well done @CheeseSandwich1. I hope it's a good call and thinking of you.

Thinking of you . Hope it goes well and puts your mind more at rest:

Any news @CheeseSandwich1?

You poor love it sounds like you're having a really tough time. Not knowing is awful especially when it's so triggering.

i hope you've got some answers and some more support in place now.

Hi, just thought I’d post an update.

I’m not further on. One consultant said CNS Vasculitis (which is 1 in a million diagnosis) the other consultant says doesn’t look like it.

I have changes to the ventricles around the brain and possibly a distended blood vessel (I think this is an aneurysm?) I have a MRA scan tomorrow to look at the vessels.

So stressed. I’m 27 and there’s something wrong which is really stressing me out x

That sounds a lot to manage OP.

I hope the MRA will give clearer answers for you and that it won't take too long to get the results.

Have you got decent support?

My Mum is amazing and is coming to my appointment tomorrow. My partner/children’s father doesn’t seem to understand.

I’m in Manchester for work today (he runs his own business) and I just want to curl up in a ball and sleep.

I'm really glad your Mum is going to come with you tomorrow and has been amazing with it all.

Sorry about your partner though. What you are going through would be stressful for anyone, but add the pressure of two young children and your previous mental health experiences it's a real shame that he isn't stepping up more.

Editing as I misread it as him being at work and then me saying to rest where you can but not easy with you having to work!

This ^

OP, you are not well and I am not going to berate You over the missed calls.
Please get your Husband Home .
Been there, re Psychosis.

Hi OP such a worry for you. The important thing is they are doing all the proper tests and not just ignoring it . It sounds like a build up of fluid on the brain which is usually mild and treatable. Xx

Best of luck for today. I’m pleased to hear that your Mum can be with you xx

Op, just wondering how you are, hoping all is ok.