Is anyone awake? I’m expecting bad news and I can’t sleep

[MyCake]

My dh is unwell and we have no idea what is wrong. We are getting scan results this morning but they were only to rule things out so probably not conclusive. However, I can’t see how this isn’t going to be something serious as he has declined so rapidly.

I feel sick. We’ve already lost most of his income through him being off work so I’m also worried sick about money. We have enough savings to manage another 2 months at the most.

My dc are already suffering, despite them
mot fully understanding how serious the symptoms are, as dh is pretty much housebound and I can’t physically drive them to all the clubs and places they need to go by myself.
I also work full time although thankfully I’m a teacher and break up this week.

My heart is broken just looking at him disappearing in front of me. The doctors are slow to take his symptoms seriously so sadly by the time he was sent to hospital he was already unable to work and very ill. It could of course be something very treatable but at the moment I feel suffocated with the fear of the worst case scenarios.
I am writing this as I’m lonely and scared and wondered if anyone is awake to say hello.

I have name changed in case anyone recognises me from this post. If you do, please don’t mention this as I am doing a great job of appearing strong on the outside.

@Daftapath I actually know my local mp quite well and hadn’t thought of speaking to her.

Thank goodness. Now your GP is on it, hopefully things will get moving. Have you actually got the GP appointment booked?

Dear OP

I don't know what your financial situation is but having been where you are I would max out a credit card to see a private GP today and get the private referral.

I had a thread on MN too and it was overwhelming all the different advice I got. Sending you my very best wishes

That's great news OP. Fingers crossed your GP will get some news from the hospital 🤞and hopefully PALs will contact you too.

And hopefully this means you can relax a bit more today, without any guilt x

You don’t need a referral for a private consultant you can just ring up and make an appointment. The problem with this case is that any private consultant would need to do the same rafts of tests that the NHS has done and in a private hospital that would cost 1000s.

Sounds positive OP. I hope you can recharge your batteries today.
Hugs. Really want things to improve for you. Everything crossed.

This isn't always the case. I saw a neurologist privately and they wanted a referral letter from GP before I could even book the appointment. (They were then amazing and found an urgent appointment for me)

Thinking of you Op, I really hope you get progress soon.

I would be very surprised if your GP didn't send DH into hospital the minute she claps eyes on him.
I suggest you discreetly pack a small bag of essentials just in case.
No need to even mention it to DH, just put the basics into a bag and pop it in the boot of the car.
Whatever you do MyCake, you must go to the appointment with him.

@MyCake you don't need a GP referral anymore for a private consultation - google the consultant, find where they do their private work. There will be a private medical secretary named for each consultant - ring them and have a chat. Explain the situation and they will sort out any appointment. They may operate their private practice out of a BUPA or Nuffield clinic, or private consulting rooms in the NHS hospital.

I've done this 3 times in the last 2yrs - twice for me and once for a DC. The DC had been passed from pilar to post by GP and pharmacy - they got a video consult with the consultant the same evening they rang - after subsequent tests they were referred back to the NHS, with a diagnosis, for treatment. It was something that would have got much worse without treatment, the log jam in the system was not at the treatment end, but at getting through the GP and the initial stages of hospital referral.

My friend is a medical secretary for a consultant's private practice - which is how I knew it was possible to go direct.

That’s if your health insurance is paying for it. If you’re self pay you don’t need any referral.

Yes I do this - find a private consultant who does NHS work - so if necessary they can refer you across to their NHS practice for tests/treatment. However if they do you still go to the back of their NHS queue.

This case is complex and serious enough to require many different tests - so he’d be going back to an NHS hospital to have the same tests he’s just had.

The most useful thing might be to find a consultant at the hospital he’s at who does private work and see them privately. They may be able to take over the reins.

However - the question would be what type of consultant? Would you go for a rheumatologist or respiratory specialist in sarcoidosis or a lymphoma specialist? The right one depends on the test results which OP doesn’t have.

I think that now the GP is acting there should be no need to pay for a private consult. It would be a pity to spend money on a neurologist when the correct person would be a chest physician. The GP is the best person to decide who the correct person would be.
I am sure the GP will expedite matters as soon as she sees OP's DH.
OP just needs to get everything organised to make sure that she and DH get to the surgery in good time for the appointment.

I am quite sure, based on my experience, that the delay has been down to communication not getting through or not getting passed on to the right person.
Once the GP got an email, she was on it.

PALS are going to contact the neurology managers today apparently.
Thank you to everyone who advised I email them.

I’m so glad you’re getting some progress.

Great!

Fabulous, well done!

MyCake · Today 15:38
PALS are going to contact the neurology managers today apparently.
Thank you to everyone who advised I email them.

actually, thank you to all of you.
This thread has been like a big hug!

Great news OP!

A manager rang and said the consultant and registrar had also got a copy of my letter (which wasn’t very complimentary about the appointment dh had with the registrar).
She was very formal and not very helpful but she did say the doctors had been looking at his scans yesterday and there was a big meeting Tuesday to discuss what comes next.
I have no idea if that is true or whether writing my very detailed letter to PALS sped things up! The PALS lady was lovely.

The manager said she’d ring back on Tuesday. I think I’d feel better if a doctor had rang to be honest as she couldn’t give any clinical information. The meeting to discuss the ct and other results is on 24th January and the 2 week pathway urgent ct was ordered on 13th December.

They haven’t even done biopsies so I am assuming it will be more tests rather than answers on Tuesday. Poor dh 😞

Sounds as though his results are being taken to the multi-disciplinary meeting, that is certainly what happened to my DH when all his results were in. It was discussed at the MDT before we were told of the results.

I’m sure the letter sped things up.

There was a meeting on Tues, they looked at his scans yesterday and you still haven’t heard anything from the doctors. You won’t hear anything until they’ve had their meeting on Tues - so probably Wednesday.

There’s not a lot of point in the manager ringing you on Tues as she can’t give any clinical details. But I suppose at least you know you haven’t been forgotten.

I’m so so sorry OP this wait must be unbearable.