Long term health conditions (young people)

But I, one thing I find really annoying  when you go and see consultants is that they read you your history. And I'm like, 'Why are you reading this to me? I know. It's my life. I've lived it' you know. And they go through every like medical thing that happened in my life. And because I was a twin, and my twin died, like the fact that they'd always tell me that I found really strange, because it didn't seem relevant. They were like, 'Yes, so you were born prematurely. You were one of twins. Your twin died. Da-da-da. You had your first this here' you know. And it just, that has always bugged me about going to see the doctor, because I don't want to hear it really. Like it just seems a bit pointless. I feel like, 'Can you not read that, and then call me into your little funny room and ask me how I'm feeling?' Which I do find, like sometimes I do find what they ask you a bit like, like they say, 'How's your epilepsy?' Like I think that's a really weird question to ask. But I suppose there's no other way of putting it. Or just like, 'How are you? How have you been coping?' I suppose. 

And I, the new consultant, I've only met her once. And they often like seem like they're in a bit of a rush. Which is quite annoying. Like because you don't really feel like, because often, it's often after I leave that I think of something that I want to ask them. And then like, 'Oh, God, I'm going to have to wait for another six months before I go and see them again'. And the, who's the other one that I saw? The epilepsy nurse. And I didn't go to see her the first few, like I don't remember being, going to see her initially when I first got diagnosed. And actually that would have been the most helpful. Because out of all of them she has been the nicest person. And I found her the most helpful because she's much more chatty and like she just chats to you. And you end up, she ends up finding things out and being like, 'Oh, well, you could do this'. Or, because like I wanted to go onto the pill. And with a lot of epilepsy medications you can't go onto certain pills and, because some of them don't work or they're contradict, yes, you know what I mean, they don't, they just don't work together.

They clash with your medication.

Yes. And that, she was really helpful with that and finding me the right pill to go on and stuff. She was really good at talking to me about that, and also more recently talking to me about if I ever wanted to get pregnant. 

And if you have any questions, can you  contact your nurse?

Yes, yes. Now I can. I only saw, but I only started seeing the nurse probably four, four years ago I think it was when I first saw her. And she's been really helpful actually. And when I was having all my problems with getting employed because of my epilepsy, I spoke to her quite a lot. And I used to phone her up and ask her what, I mean because she was a nurse as well, and she said, when I told her that I wanted to go into nursing, she said, 'That's brilliant. Go for it. You know, don't let it, you know, don't let this stop you'. And she, but I found the epilepsy nurse really helpful. I thought she, out of everyone she's been probably the most sort of honest and upfront and like just kind about it as well. 

Like doctors sometimes can be quite clinical about things and sort of forget that you're a human being, and just see you as a condition rather than thinking about how your life is. That would probably be my biggest criticism of the consultants that I've seen is that a lot of the time they see you as your illness and not as your person. Which I suppose is really difficult for them because they see hundreds of people all the time. And, you know, when you go to a neurology clinic they’re, you know, pumping them through as quickly as they can.

Now regarding your GP how do you evaluate the kind of communication with him?

It's good but I think it's different with a nurse because when you go to see your GP it tends to be, you know oh this has happened this week and you know I need a fix for this. Whereas the nurse is more of a, more long-term care. You know I've gone to see my GP when and I've said, 'You know I can't breathe. I've, I think I've got bronchitis 'cause I always recognise the symptoms now'. And so he says, 'Fine you know give you some antibiotics'. And so you don't really get the sort of same care as you do with the nurse because the nurse talks to you about things in more depth and in a long-term sense. So you know, 'Are you feeling different this month to three months ago'. And you know looking at it like that rather than you know, 'Oh you're not very well today. Let's do something about it'. So sort of short-term fixes.

So it's more like an assessment, a long term?

Yeah, yeah, exactly.

Based on your experience is there anything that they should improve regarding sort of how they relate to young people with asthma or?

It would have been useful to know about the nurse a while ago because I mean I only, I was only told  yeah I think it was a couple of years ago. So I didn't know about, I don't know whether that's a new thing that they're trying to do or whether it's being going for a while and I just didn't know about it. But there's, before that time there was nobody to really talk to about it and get that kind of advice. And I don't know with my GP I don't feel that I want to waste his time by talking about these things. Because I just, you know, they don't have a lot of time anyway so you just want to go in and say, 'Right this is wrong' and he can fix it so you don't go into depth and. And I don't think. They, they don't really volunteer that anyway. I think it's more of a nurse's role to give you that care perhaps [laugh].