Feeling Fed Up 😔

Hello,

So, last Sunday - not Sunday gone, my husband had two seizures - a focal where he was aware of what was going on which then escalated into a full blown one. Paramedics arrived and they were in for about forty minutes before whisking him off to a&e to be checked over.

He has Hydrocephalus and had a new shunt fitted back in 2023 after 30 years of having a non working shunt (NHS thought it was unnecessary even though he had symptoms of dangerous levels of pressure). He had an aggressive cough for over three weeks. I said I thought he should get it checked but he persevered with it.

He had scans last week, and he said there seems to be a kink in the line, so he might need a revision.

He was told on Monday he was on the urgent list to be admitted but it’s now Thursday. He is there right now waiting to see his consultant after non stop body jerking - it’s like someone is sticking a charging cable in him making him jump! They’re that bad. Doctors said they don’t know what the cause is.

I am beyond fed up of non answers as is he. We’ve been through the entire department looking for answers in the past two years since his accident and revision, been in touch with PALS who said they don’t deal with that sort of thing.

Well, what on earth do they do, then?

We feel stuck. What do we have to do to get them to take his condition seriously? His shunt nurse actually laughed at him a few weeks ago!

What do we do because I am out of answers.

Hi @Phoenixwings35
Goodness, how worrying and stressful for you both. Have they admitted him.

This won’t help if they haven’t but if they have it’s useful to know:

@Melly1

No, they didn’t admit him. They were supposed to be but they’ve said nothing else about it since Monday.

He’s home now, but it was wasted journey as he waited over seven hours only for his neurosurgeon to be called into theatre at the last minute, so he’s been told he’ll ring him tomorrow.

I highly doubt it but we’ll see.

He was meant to be high priority and seen within two hours. But that didn’t happen.

@Phoenixwings35

Sorry to hear that.

If the consultant doesn’t phone then perhaps ring his secretary by lunchtime to remind him.