WHY DO I BOTHER!?!

[rinbag]

SO... I have just come back from my long awaited appointment at the hospital. I assumed that I would be starting Methotraxate today (I was told to go away and research it and decide whether I want that or Ciclosporin), but no! No - I'm not going to be starting it today or any time in the near future because apparently, I'm too young! I'm 25. I've had psoriasis for 14 horrible years and I've seen on here that younger people than myself have had MTX treatment and yet that counts for nothing. It's not like I only have a little bit either, I have it on every single part of my body and full scalp coverage. It's ridiulous that they would put me through all that and get my hopes up and then leave me with nothing. Oh actually, tell a lie  - I can have more !**! UVB that only last for a month and then I've got full blown flakes again. Woo hoo, thank you NHS!

That's not even the worst of it. I was made to undress (I was not warned of this) and 4 doctors (2 of them male) just walked in and expected me to show all. NO THANKS. How dare they. I've never felt so humiliated and ashamed of my body. I'm so upset right now. I'm just venting. Apologies if anyone is offended by anything I say.

If this is my life and how it's going to be though - I would honestly rather not live it.

[Mimz]

That's awful! I'm so sorry you've had such a horrible experience. I was put on MTX when I was 25, and I know people younger than that have been on it, so I can't imagine why they'd think you're too young. As for the other doctors coming in, I frequently experience the same, with derms bringing their students to see and poke me, because I'm 'interesting'. It's not fun.

I really feel so sorry for you. It's just not fair. I think you should query their decision, and complain about how you were treated. (hugs)

Mimz

[arizona]

Dont lay down and take this, you are not too young, thats rubbish and no doubt saves their budget

There are plenty on here younger than 25 on mtx or ciclo, i'm sure you'll find some if you put a post asking on the 'younger' part of the forum to back this up

So dont get sad get angry, and tell them you are not happy with todays appoinment and want a second opinion - or what's the alternative, wait , get fed up and just go for the uvb?

You'll feel loads better if you stand up and say no i'm not having this

[Maria2]

Hi,
 I'm so sorry for you having to go through that, I know what it feels like I had a nhs workman walk in on me once 
You need to go back and fight your case, sadly it shouldn't be like this.
Big hugs
Maria

[SallyD]

I feel for you.... I know how frustrating getting treatment can be... They don't understand the emotional side of P.  I would suggest that you contact the PAL's department (Patient Advisory Liaison) at the hospital,  They are there to help with complaints, please speak to them and tell them how you were made to feel with Dr's walking in and that you expected one them and then got nothing.. They can take up your case and help you.... good luck... and a big hug S x

[Pieman]

hi rinbag ..

where did it all go wrong on so many levels ??

on top of the sound advice posted, from past experience
i was always approached beforehand if students were training
and given the choice to consent/ or not...seems a big patient dignity failure
on your hospials derm unit.

indeed - there are many "youngsters" on systemics under dermcare, so your
age shouldn't be an issue - no doubt you will of already reasearched the benefit/risk
ratio of these to make an informed and mutual decision..

what were your pasi and dlqi scores?...were you asked your thoughts and opions
in regards to meds?...it's got to be a 2way conversation!
on the whole nhs has been fab with me, but holes do appear,
seems you got short shrift

pie

[rinbag]

Thanks for all your kind words and support guys. I took on what you said and called the dermatology department at the hospital, but nobody was available to talk so I just left my details. I'll try again if I don't hear back tomorrow. But you're right, I should fight this. I just didn't even get time to think today, I was so shocked by how many people there were in the room and they all just seemed to be staring at me as the head doctor talked...

I thought it was very unfair considering how much research I've put in. I could understand if I was a teenager. but I'm a 25 year old woman. I am capable of making a sound decision about the kind of treatment I feel that my body can handle. The original nurse I spoke to (who got me referred) was there too and she looked pretty embarrassed by the whole situation. I think she was just as confused as I was.

what were your pasi and dlqi scores?...were you asked your thoughts and opions
in regards to meds?...it's got to be a 2way conversation!

I haven't a clue what my scores are. I assumed I would be told, but nobody said anything. I wasn't really asked what I thought about any of it though. I just felt like I was being talked at. He started banging on about PUVA (is that the one with the tablet?) and I tried to interrupt and say that I was here for MTX, but then he kind of brushed that aside and I lost track of what he was trying to say to me. He told me what HE thought was best for me. He didn't ask me what I wanted. I might as well have invited my Mum along and he could have just spoken to her!

I really hope my experience is a one off. I only say this because my faith in the NHS hasn't been great so far. It took me 13 long years to get referred to a dermatologist after having creams and ointments thrown at me by every doctor I've ever met. I've never felt like I've been listened to until I met my new GP who is amazing (hurrah!) and I don't want to think there aren't more people like her out there.

[steelem]

tbh this experience sort of happened to me on a number of times - i have no faith in the nhs and i like so many others have tried every alternative under the sun so i aint gotta make that dreaded trip to hospital.. anyway im on the alternative page as i have now cracked this for the time being - its taken 22 years but this is winter in uk & for the 1st time i can say 99% free of p..  come check out the alternatives you dont need to buy potions like i have done in the past maybe a few diet changes maybe even a few light sessions but hey i dont even need to be here but its the alternative guys that have lead me over the years to find the answer to give me this sort of clearance..

[arizona]

Thanks for all your kind words and support guys. I took on what you said and called the dermatology department at the hospital, but nobody was available to talk so I just left my details. I'll try again if I don't hear back tomorrow. But you're right, I should fight this. I just didn't even get time to think today, I was so shocked by how many people there were in the room and they all just seemed to be staring at me as the head doctor talked...

I thought it was very unfair considering how much research I've put in. I could understand if I was a teenager. but I'm a 25 year old woman. I am capable of making a sound decision about the kind of treatment I feel that my body can handle. The original nurse I spoke to (who got me referred) was there too and she looked pretty embarrassed by the whole situation. I think she was just as confused as I was.

what were your pasi and dlqi scores?...were you asked your thoughts and opions
in regards to meds?...it's got to be a 2way conversation!

I haven't a clue what my scores are. I assumed I would be told, but nobody said anything. I wasn't really asked what I thought about any of it though. I just felt like I was being talked at. He started banging on about PUVA (is that the one with the tablet?) and I tried to interrupt and say that I was here for MTX, but then he kind of brushed that aside and I lost track of what he was trying to say to me. He told me what HE thought was best for me. He didn't ask me what I wanted. I might as well have invited my Mum along and he could have just spoken to her!

I really hope my experience is a one off. I only say this because my faith in the NHS hasn't been great so far. It took me 13 long years to get referred to a dermatologist after having creams and ointments thrown at me by every doctor I've ever met. I've never felt like I've been listened to until I met my new GP who is amazing (hurrah!) and I don't want to think there aren't more people like her out there.

Glad you are going to follow this up, something that helped me sometimes when i felt i wasnt being listened to was to remember that they could close the door at the end of the afternoon and go home in their perfect skin whereas i have to live with it, so why should i be fobbed off and have to live with it
Get onto them tomorrow eh, and if there is no one available tell them you want a call back 

[Darren.]

think we have all been in this situation at one time in our p lives, its never easy tho

firstly i agree with pieman, get hold of your pasi scores they will be invaluable to you for treatment levels

to a degree i can understand where the docs come from , why prescribe something if its not needed at that level .....not saying thats the case here but i do belive we do have to look as objectively as doctors do...the bigger picture of a lifetime disease

certainly do keep on at them, that does help but again i say, get your scores if that hasnt been done then get scored