Autonomic unit UCHL : Hi I had an... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

2,948 members934 posts

Autonomic unit UCHL

5 Replies

Hi

I had an outpatient appt yesterday at UCHL for my autonomic symptoms

I have just o go in for tests ( long waiting list apparently )

He mentioned 24hr BP, tilt table, meal load, exercise bike can’t remember if there is anything else

Few questions....

Has anyone had these?

Is it overnight at hospital or do I have to stay in a hotel?

how long did you have to wait for a appt?

Would appreciate some heads up!

Thanks

5 Replies
leakeadea profile image
leakeadea

Hi there,

I'm having my tests carried out as an in patient because I'm disabled and in very poor health but I think it can be done over two days and you stay at the hospital hotel.

If I were you I would call the autonomic unit and ask them for the details. I know that there's a long waiting list either way but it's even longer if you have them as an in patient. My appointment was at the end of May and I was told it would be a 5-6 month wait!! 😵

You've made me think that maybe I should call them too, as surely I should have at least received an appointment letter by now?!

Claire

in reply to leakeadea

Hi Claire and thanks for the reply!

Trying to remember everything that was said is always challenging after you come out isn’t it?

I remember him saying ‘day unit’ and then24hr BP- so I asked would I have to stay over and he said yes but I should have questioned it further as to where!

I asked to be cc’d in to my GP letter so maybe that will enlighten me further.

Did you get a copy of your letter and if so how long did it take?

Hope you don’t have to wait much longer and do keep us posted as to how it went

Gentle Hugs!

leakeadea profile image
leakeadea in reply to

My appointment was on 31st May and my letter is dated 5th June but I'm really not sure when I received it, I very much doubt that quickly. It only says that I'm being tested, it doesn't give any info on what happens when I actually go in for testing, I'm assuming that this will be explained when I receive the appointment letter for my admission.

From what I remember, the place you stay is just across the road from the hospital. I have just called the number on my letter and got thru to a message service for the autonomic unit secretary. I've left a message asking them when I might hear about my admission.

The telephone number is:- 020 3448 3413 and it asks for the patient name and hospital number, which you may not have if you don't have a clinic letter yet. You could call and tell them the date of your recent appointment and explain that you weren't able to take everything in and could they call you to explain where you stay overnight.

Hope that helps, Claire ☺️

I'm going to have a Google in a minute to see if I can find any info online, I will message you if I find anything out.

leakeadea profile image
leakeadea in reply to

Just googled the hospital but it doesn't say anything about where to stay, it just gives the same telephone number as on my letter, so I think calling and leaving a message is your best option.

Let me know how you get on.

in reply to leakeadea

Good luck for your visit! Keep us posted!

You may also like...

Bath Assessment cancelled, only EDSh Dr. leaves

another GP appt just to find out what is going on. Have I been automatically moved to an appt with...

Stomach problems, possibly slow transit?

I have recently been diagnosed by my rheumatologist with HEDS . I have quite a few things going on ,

My main issue is balance and the feeling like the lower half of my legs are wooden.

frustrating. Does any else have balance issues and what treatment are you having ? Have you found...

EDS? Where do I go to get diagnosed? PS I'm new to this forum.

together and am wondering if I have EDS hyper mobility. I can't stand for too long, my hips click...

Jaw and Throat Spasms

far as I know I have hEDS; I am making an appointment with consultant as others have suggested. Any...