To move hospitals

[eclipseofthefart]

Posting here for traffic.
DH currently in our small local hospital with problems with his pancreas. What he has is extremely rare and no one seems to be able to give us any answers. They are doing some tests on him but not enough in my opinion. DH isn't well enough for us to discharge him and move hospitals so I wanted to know if any of you had any experience of getting specialists around the country involved in things like this?
I genuinely believe they would be really interested in his case for their own research as all the doctors are completely baffled by his condition and have never seen anything like what he has.
We don't have private health but are willing to pay if that's what it takes (not crazy amounts of money though)
I don't even know where to start, any advice would be really appreciated
Thanks

I would ask his consultant who the regional specialist is for this condition. Small hospitals will have bigger/specialist units that they refer complex cases to. His doctors at the current hospital should be speaking with the specialist centre for advice +/- transfer when he is well enough. If it’s a really rare condition then there should be a national specialist or specialist centre which he should be referred to. Can you try to speak to the consultant or senior doctor tomorrow?

I will make sure I'm there when the doctor does the rounds tomorrow then and ask. The Doctors are so stretched, it's sad to witness how underfunded the NHS really is, so I just can't really see them putting much energy into his case, which is why I wanted to try and get someone genuinely passionate about the pancreas involved as DH has such an interesting (whist also heartbreaking) case

I’m so sorry he’s poorly. I hope you can get help soon. Things are incredibly stretched at the moment, it is so difficult

It depends on the nature of his condition.
In healthcare doctors often don't know exactly what's going on - I saw a lot of people today with viral rashes. I know that the rash no sinister features, and they look and behave like they have a virus and I send them home. I know enough that its not serious and there's nothing I can do about it, but I don't know exactly what's going on.

If he's got a pancreas problem - the first thing to do would be to do basic bloods, then depending on the results do more complicated bloods (some of which would take weeks to come back regardless of what hospital you were in). You'd also think about imaging.
In a bigger hospital there are likely to be image machines, but a higher demand and sicker patients - there's no guarantee that he'd get it quicker.
Likewise blood tests may not happen quicker.
In the mean time you'd manage depending on the best guess of the disease process (and you should have an idea of that). Is it likely infective - give antibiotics. Is it a possible mass - discuss with oncologists. Is it that pancreas just isn't working - support with enzymes and insulin etc as needed.

Depending on the nature of what's going on I'm not sure that a specialist centre will speed you up.

Thanks Fleabag

That's really interesting to hear Negomj, you really know your stuff!
He's had an X-ray, CT Scan, MRI so far and the only ones we are still waiting on are blood cultures (which they only did on Monday even though his CRP has been over 300 for 2 weeks!) and an autoimmune blood test which we will hear back on next week. The area of his pancreas that is affected is a completely different area to what they've ever seen before so they can't give any advise on foods and drugs etc either
Just feel like he's getting worse and not better and he's not being giving the right treatment or advice