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!

Reading your essage is very interesting. You say the patient can ask to speak to the secretary; the secretary then calls the patient back to tell them a new day and time.

The fact that in NHS world the patient has to ask but is then told, speaks absolute volumes about the respect afforded to the patient.

Sorry if it seemed confusing. But you misunderstand.

You the patient misses a call. Keeps missing the consultants call. So you ring the secretary to let her know when you would be available for another call. The secretary would then relate that to the consultant. Sometimes consultant just rings on one of those days you are available. Sometimes consultant says let patient know I will ring back on such and such a day/time. Obviously one of the days the patient is available. As said before unfortunately consultants have several roles to do. Not all available to
do at their desk.

Or you as a patient misses consultants call you don’t have to contact anyone and can just wait for consultant to call again another time and hope you are available to take that call.

YABU for opening the envelope when you don't know how to interpret what's in it.

" A few days" !!! 🤦

There is no other professional group (with the possible exception of solicitors) who would dream of behaving that way.

And I wish health professionals would understand (acknowledge) that they are not the only people who do a demanding and important job. Patients also have meetings to attend, urgent (as in time critical) things to attend to, clients to visit, etc.

Not everyone works 7 days a week. Therefore consultants don’t work every day hence the it can take a few days. Also sometimes the secretaries cannot get in touch with the patients. Especially if they don’t answer their phone for a few days. It’s not ideal but just because hospitals are open 24/7 patients do need to understand not we home in there is there and available all that time.

Not everyone who works there is an available 24/7. Not sure what happened to my auto correct 😂

The professionals I listed in my earlier post don't work 7 days a week either. I took you to mean a few business (or working) days, sorry.

And we're not talking about patients who don't answer their phone for days (I do understand that there are difficult patients), we're talking about someone who rang back 5 minutes later.

In my personal case I was waiting for a call from my GP: when it came I couldn't answer it fast enough (I was wearing gloves) and returned the call instantly - to be told by the receptionist that no the doctor wouldn't ring me again and I would have to ring again in the morning to request a new appointment.

Apart from being rude it's a ridiculously inefficient way to operate - but that's the NHS all over (over worked staff hampered by time-wasting processes).

Sometimes consultant just rings on one of those days you are available.
This is still misunderstanding how some people's lives work and the importance of stating a time. When DS is in school or camp, I will have meetings every day. One day could be 9-11 and 4-4.30, another could be 8-4 with an unknown lunch break. I might also be called on the first day between 11 and 2. If I know the consultant is calling on the first day at say 10am, then I can rearrange that meeting, but on the second day I can still only be free from 4. It is much too expensive and impractical to cancel entire days of work and sit by the phone knowing they might call at some point that day, and when I'm committed to being in a meeting I can't just hang up. The GP will also only call at a random time of their choosing, though reception are nice enough at ours to limit me to an afternoon call when requested, so that I can manage the continuous availability requirement more easily.

100% agree

💯

@GRex @MrsJeanLuc
Agree with everything you say.

Dealing with GP's/Hospitals is frustrating and it is not patient/service centred. The word service remains in the name and it's high time it were given more than lip service.

@CheeseSandwich1 I know we have derailed your thread a bit but we do suppprt you getting the help and information you need. I hope today is fruitful from an information perspective and that you might also contact your MH team to get some support emotionally as well as physically. Warm wishes for a better week.

There are some great services; for example phlebotomy you can book from a big range of time slots and turn up. If you could do similar for other appointments by getting a link "book your call slot" and then say 10 people can book 9-11am, that would be so much easier.

Not sure what else you expect given that consultants don’t work seven days and have clinics and surgery commitments. I’m old enough to remember the days when a consultant actually ringing you at home was unheard of. You had to wait for a clinic appointment and if you missed it you had to wait for another. Same with phone calls now. If you miss one, you have to ring and book another or in OP’s case wait for the consultant to call again and make sure she doesn’t miss it. I don’t see what’s so unreasonable here.

For the patient yes, but what about the doctor ? The nature of the work means they’re not sat at a desk at certain times of the day.

That's great for those who are digital literate @GRex but not so long ago my 88 year old mother had to travel from the coast to a London Teaching Hospital for a specialist heart procedure (fantastic it was available to her). Before one of her appointments, she had to have a blood test at that hospital and it could only be booked on-line. She tried, she failed, she telephoned and asked to make an appointment over the phone. She was peremptorily told "no you can't, appointments can only be made on-line so if you can't do it, get someone who can to do it for you". There were tears.

She is nearly 89 and was ill and scared

The NHS can't do x and y due to data protection but when it comes to it, expects someone to share their medical information with a potential stranger.

I did it and if it hadn't have had the potential to upset her, I'd have made a formal complaint because standards needed to be set with a jobsworth.

So what’s the solution given that the nature of the work means they’re not always available at the convenience of the patient and there are a hundred things that could happen in a doctors’ day to delay the call.

I would have made the complaint anyway. There are alternatives available for those who have no internet access or find it difficult. Our surgery doesn’t do their own blood testing - we have a phlebotomy clinic bookable online. For those who have no internet access or find it difficult, our surgery will actually book the appointment on their systems.

Sorry OP, but I agree with this. The envelopes are sealed for a reason - they’re not meant for patient viewing because they contain information the patient won’t know how to interpret, which leads to googling, which leads to unnecessary panic when you find a hundred different scenarios, 99% of which don’t apply to you. Which is exactly what OP has done.

It's genuinely not an unusual situation. I can have any of about 250 people contact me for something urgent each day, but usually only about 40 do. The vast majority send an email or log a request. I check regularly and respond. If every patient knew call- backs were 2-4pm on Thursdays and could log question in advance that would work. It's the requirement for people to be constantly available in real time that's the issue, asynchronous communication is much easier.

@Rosscameasdoody - a clinic appointment would be fine, that had a time slot. Obviously there should be a phone booking option for people like your mum. Anyone under 80 is quite used to technology now, but there will always be those with learning disabilities or temporary issues meaning they need extra help.

Exactly the same as any other professional in a busy job.

I am often not available at the convenience of my client, and a hundred things can happen to delay me. But I call them back, or I make some other arrangement to speak to them, or I find another way to address their need.

What I don't do is go:
"As you should know I'm terribly busy, and of course I don't work 24/7, and if you're not available when it suits me to talk then that's just tough"

You have missed the point. It's the expectation that the patient may ASK but the hospital can TELL. There's something wrong with the power balance there.

In reality one has to phone and beg a bit, usually speaking to someone quite terse who makes you feel like an inconvenience. You give them dates and times when you simply can't be reached. They then phone you back and the conversation goes a bit like "is that Roses"? "OK lovey, I've spoken to Dr Jones and she will call you on Tuesday, 7th September, between 10 and 4". If one dares say, "oh dear, I'm at Tribunal that day, I did tell you that" it's likely there will be an intake of breath and a tut.

There is no cognizance of patient time or of building good patient relationships in about 50% of interactions.

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?

Did the OP know to expect a call? Did she have any idea re date and time?

Are there any scenarios you can think of where people can't always have their phone on next to them & are able to answer it?

I hope you have had some MH support since this post OP and I hope you get some answers today.

OP on one post you're scared about dying and leaving your children, and the next it's this. Please get in touch with your psych team. Not all mediations are out to poison you. Do you feel the same about red meat? Breathing in the air with pollution? Radiation? Do you go out in the sun?

why would you (if at all needed at this point) deny medication to help you live a life with and for your children? Are you really going to not ever take medications? What if one day medications can save your life?

if you're scared you'll die of being poisoned you could die without medications. It all ends the same. So surely, for your kids, you'd want to take any medications?

I don't think you're thinking rationally at all here. Please get in touch with someone.