Please post here for UCHL visits -

[clairbear]

Hello!

My Gp completed a referral a cooule of weeks ago - I got a letter from UCHL to call for an appointment - the soonest available was 20th Jan which i took - i didn't think that was too bad . . . .

Good luck with getting a referral

Clair

[Wobbly legs]

Hello there!

I spoke to prof g secretary Mary last week ho told me NHS appointments were 13 weeks minimum . As a result my boyfriend has stumped up the £300 to allow him to go see the prof privately. I've now got an appointment for 1st December. I hope that helps, I can give you the number if you want to phone them yourself? His secretary was very lovely and helpful

[laracomps]

Hi all,

Kept meaning to post about this, but keep forgetting, hence the late night Christmas eve post lol.

I've finally got an appointment at UCHL on 28th Jan. It isn't with Professor Grahame, I kind of expected that I think. He gave me the initial diagnosis in 1999 or around there anyway.

So I've been given an appointment with one of his 'team' - I'm aware I cant post their name in here, but as I've not heard of them before getting a bit worried about how good they are. I'm hoping they should be very good as they are part of Prof G's team, but all the experiences I've had in my life have turned me negatively towards anyone medical unfortunately...

I'm not sure if I can hint about who I am seeing? If not mods feel free to remove... But it is with another Professor whom I believe might be male, if anyone might think this is who they saw, would it be possible to PM me to let me know how you got on?

Sorry this is a bit confusing, hoping that someone will have also seen this professor, I hate going into things 'blind' as it were.

Lara x

[keenly]

Hi everyone.

I will have to go back to London in Feb or March for 4 days of testing upon Prof M request.

I really need some info. I do not want to stay in hospital but want to sleep at the hotel. I will need an escort(my dad)where can he stay?

I know barts have a place for guests and its much cheaper than the other LOndon hotels

ANY info would be well appreciated for those who have done this

god bless
Paul
{mod edit - email address removed. You can PM or email Paul usig the buttons}

[clairbear]

HI all,
I am off to uchl on Thursday - due to a small fracture in my foot, I am walking more slowly that usual.... can anyone let me know how far it is from the main entrance to the clinic and how long I might be there? I need to plan my pain relief!

Thanks

CLIR

[Fiona-Jane]

i think the entrance is about 150-200 meters from the tube station ish, the building is directly across the road from warren street tube station (it's got a glass front so is really easy to spot when you're still getting your bearings when first get out of the station and onto the street) but the entrance to the hospital is a little bit further up the road. i've no idea how long you'll be there though, i've only been twice and once i waited several hours and the most recent time i was seen within 30 mins, i think it depends on how many patients they are behind with and so if you have an early appointment you tend to have a shorter wait.

i hope your foot heals quickly and isn't too painful on the way there!

and keenly, i'm sorry, i've never stayed at the hospital or the hotel so i dont know. maybe you could give the main reception at the hospital a call and see if someone there knows? i'm sure they must get a lot of similar questions


i'm going to see the orthopedic department at uclh on the 18th feb at 1pm, has anyone else seen this department before?

anyone around on the same day and fancy a coffee or tea in the cafe?


fi

[laracomps]

I would have done But I'm up on the 28th Jan.

I'm so scared, it's making my anxiety etc so bad leading up to my appointment. I'm so scared that they won't listen to me/believe me/think i'm over exaggerating like everybody else does.

I even know that it's ridiculous as its the clinic at UCHL that initially diagnosed me!! I guess its mainly because I saw Prof Grahame all those many years ago, and because I'm seeing someone else that I've not heard of before, I'm panicking. I'm even getting worried about being told off for things like using a stick even though my physio & a community physio recommended to do so. I'm a plank, I know.

[christianne]

Hi, Last time I was there for my adult daughter I seem to remember that from the main entrance you turn left and there are a set of lifts which you go up in but I am not sure to what floor, so check at the desk (or it might be on the letter), then it really wasn't far along a corridor to the department if I am remembering rightly.
Chrstianne

[Rosie]

Hi all

Laracomp, no need to be anxious, they are really considerate and take their time to liste to you. I was seen at UCHL by Alan Hakim, who was one of Prof G's team at the time. Not only did he listen carefully to me, he was polite, treated me like an intelligent woman, and was very gentle when he examined me. In particular, when I said that all my joint problems had been blamed on my weight, he picked up my wrist and said, 'I would like to see how they could blame this on your weight'.
I lost sleep before the visit as well, I do get anxious, and it was so unnecessary as they were lovely.
Try and relax, and plan what you want to get out of the visit. Write down any questions you have, or any referrals or treatment you would like to access, or for them to reccommend.

Rosie

[laracomps]

Thanks Rosie, that has put my mind at rest a little. I too am overweight, and having had 2 children (youngest is 8 months) all my problems keep being blamed on that. If only they would listen to me and my body. My back is a little worse since having the kids admittedly, but the rest of my problems have remained the same. It is only since I stopped fighting the pain etc, that I've realised how many problems I do have and how it affects my life. Stupid thing is I'm happier now than I ever was fighting it!

One other question I guess I haven't thought to answer... well a few actually.

1. Will they give me a written report confirming all the problems that I have?
2. Will I get follow up appointments there, or will they find someone local to me? (I'm only 40 mins train ride from london)
3. Will I see a special physio or OT there, or will they just give advice to my current ones?

Thanks.

[Rosie]

Hi again

OK, as far as I know

1 - yes, definitely. While you are there you can ask for a copy of the report to be sent to you, as well as to the your Dr (or whoever referred you.

2 - I didn't get follow-up appointments, but then I was living in West WSales so miles and miles away. This is something that will be discussed while you are there, and will probably depend on what is available locally, the quality of what is available locally, and maybe funding? as well as what they think you need. I know that some members who live locally to me (Worhting/Brighton) are treated there.

3 - not sure whether you will see the physio, unlikely to see the OT. I saw the physio on the same day as my appointment, but again, this was because I lived so far away. I don't think it is usual to see one at the first appointment. i think it will also depend on what you have available locally, but I do know that they are happy to advise local physios.

Do add these questions to your list, and do write things down cos if you are anything like me, once you get there your mind will go blank!
If you do forget to ask anything, they are very good about answering email or phone queries. Their secretary can answer any queries you may have about the mechanics of a visit. Hopefully someone else will be along to answer some of your queries as well.

Rosie

[christianne]

Hi Lara,
I can also second what Rosie says, you will get a written report although they can vary as to how much detail they put in it, you could ask them to write about about your specific problems though if you want. Also they are genuinely nice and are so used to our problems that there is no question that they won't believe you and it will be a huge relief to actually tell people who understand and believe you, so try not to worry. Best of luck
Christianne

[Bo1970]

I waited for my apointment for 3 months and it's on 20th too
I'm so anxious just in case I forget or miss it. Must tidy up my list and write down questions.

I've been feeling tired and also I think I am getting a Malar rash around my nose and I don't know if I have Lupus after all, (as well as EDS or fibro) I'm still bendy though.

[Purplesheep]

My rheumie said he would refer me to UCHL when I saw him in October last year, I'm getting a bit worried now since I called the UCHL Outpatients Appointment line today just to make they got the referral, and the person I spoke to said they couldn't find it. I've already emailed my rheumie's secretary, since I couldn't reach her by phone, to ask whether the referral has been done. I just read that many people here waited 3 months, or even slightly less, for their appointment so I hope that my consultant didn't mess it up ... I already asked for a referral back in July but it was never done then, so my patience is slowly beginning to fade.

Good luck to everyone who has their appointments soon

[clairbear]

hi all,

I'm looking forward to tomorrow - although it will be an early start for a 9.45 appt. Thanks to everyone's directions .

What I have found recently is that I am struggling to get to see consultants I have seen before due to the Pct no longer funding hospitals out of area, or treatment being delayed due to lack of funds . . .

Clair