I think they should just have an awareness of the patient, particularly if they’re a bit younger, not just talk to the parents, include the, the child as well. That. And I think it’s just an awareness of what else they might, might be happening to them, not just the arthritis. What else might be going on. So just awareness really what it, what it is to be like a child [laugh] and everything involved in being a child.

Did you feel included when you were in the small clinic?

I always felt included because I had such good relationship with the doctors. Yeah I never felt excluded but there’s some doctors you see and you think, ‘Oh no, he’s not really including me. He’s talking to my mum. He’s not really talking to me.

Don’t pull people around so much. They, I know it sounds silly but my left knee was hurting quite badly and my consultant, as lovely as she is, really pulled around with it and it hurt so much more for months afterwards. It took a long time to get it to feel better after that. And I think they don’t necessarily realise that they pull people around a lot especially when you’re being checked over by the physio. These days they’re not so bad but when I was a child they pulled me around something rotten and made me cry, it was that bad. Just trying to find out where my boundaries were. And I thought, ‘That’s not fair, you can’t just” Somebody that I don’t know just starts grabbing me and pulling me about, pulling my head this way and my leg that way and I think sometimes they need to realise that it’s not an ordinary person they’re dealing with, it’s not somebody who who isn’t feeling any pain, it’s somebody who does feel pain and feels pain quite easily and quite sensitively. And I’ve got very sensitive skin anyway. You could sort of touch me anywhere and it would hurt a little bit. I think that’s the way I’ve always been. And they do need to realise that sometimes.

And also realise that a few minutes in each consultant, the consultation isn’t enough. I know they’re busy and very busy but listening is very important I think. I, I’m lucky with that, my consultant I can spend quite a lot of time with her and she listens to me quite well. But I can’t imagine what it would be like if I only got 5 minutes to see her. Nothing would ever happen. I wouldn’t ever get anywhere.

No, well, for me, I was quite honest, I just tell my doctors that I haven’t done this, I haven’t done that. They’re going to lie to you [laughs]. Terribly, but you’ll know.

About what?

No, just about what they’re doing, medication, things like that, they’ll lie. You’ve just got to, I kind of always knew that, for taking antibiotics, so if I wasn’t taking them I would just say, look I haven’t been taking them, rather than, ‘This antibiotic hasn’t been very good, we’ll try you on the next one. Well the likelihood is they haven’t been taking it. To be fair. It’s just knowing that they didn’t go through that stage, but they will come out of it. It’s nag, nag, nag [laughs].

Nag, in which way, how?

Just nagging, it’s repetitive and say, you need to do this, this is why, why aren’t you doing this, are you going to try. I mean [name] used bribes with me, he’d place bets, if I did something I’d get this, I did everything, it made it more interesting, more entertaining, and it eventually has worked. So, but basically I used to go in and I used to know what he was going to say to us every time, it was like, ‘Oh he’s going to say this again, he’s going to tell us to do this’, which just has to be drummed in, it does get there eventually.

I’d advise doctors and nurses and all people that care for people with CF and any medical condition to be realistic and to look at things from that individual patient’s perspective. So say you’ve got a teenager who has CF, try and look at things from that teenager’s point of view like the experiences they could be going through in their life at that time, the type of friendship groups they may have.

And when giving them a new treatment or considering a new type of treatment for them is to consider it in the way that it will affect them in their situation, so to make sure that you treat them as an individual and not just as a general CF patient. While for example you might say, well this is advised to give to CF patients in this situation. Well not just to look at it from that way but to think, well in this situation we’ve got this individual with these symptoms and this situation. And make sure that you, you look at things realistically and for that individual patient. So to treat each patient with CF not just as a CF patient in general but as an individual person who has individual needs and priorities.

Doctors should know more about it because if there is a situation where you are suddenly horrendously ill and you have no idea what is going on the first person you go and see is the doctor. That is the first person I went to see and that makes sense, that the first person you go and see is the doctor and so the doctor should know more about it and if they don’t they should at least be able to suggest one that should. Like I went to see this GP with a special interest in ME who was a brilliant doctor and he knows a lot about the illness so perhaps they should ‘ people that are suspected of having ME after they have done tests for glandular fever and all the rest of it and nothing shows up, because there is nothing to show up for ME. Then if they don’t feel confident enough to be able to deal with it themselves then they should send someone on, the patient on to someone who does know about it. Because it is unacceptable just to send children off or anybody off without giving them satisfactory medical advice about it. And I know it is difficult and I know there aren’t any fool proof answers but graded’ resting and pacing yourself sounds almost a bit like a clich’ but I think that is the thing and I think some doctors do say that and I am being a bit harsh on doctors but it think they need they need to be a little bit more understanding about the situation because every case of ME seems to be a little bit different. Because tiredness affects peoples bodies in different way and doctors panic at that because they want to try and treat everybody the same way and I think they have to try and be a bit more flexible. I don’t know, may be that is just educating doctors better on it, or if they are not capable of then sending the people off to somebody else, then talk to them about it more. Because they do need to know about it more. Because it is such a daunting prospect. You are suddenly horrendously ill and no one knows what is wrong with you, it must be ‘ it is the worst thing. I mean you need help and you go to the doctors and they need to help you. I think.

It’s important for diabetics to have a big say I think in their treatment because the treatment is a lot around them but I’ve, I know I’ve been quite lazy with my insulin and taking it and I think in many ways my doctors should’ve picked up [laughs] on that a little bit earlier, but for them to have seen it I think they should’ve asked me a few more questions like, ‘when I have my insulin am I, how much shall I thinks getting in?’ or ‘if I’m sure that I’m, my insulin’s getting in all the time?’ and just things like that would’ve been more helpful in a way, and I think probably it would’ve been better if I could’ve had someone just checking on me a little bit more regular than three months because I was finding that a lot of my appointments were close to six months appointments rather than three months so.

I’d want to tell them how frightening it is, just making the effort to go and see them. You know, I just felt like it was the biggest ordeal in the world going to see the GP because I was so frightened of not being believed. And I think like if the doctor had said to me, ‘It’s ok I believe what you’re saying. I would have been able to tell them a lot more. But I felt like they looked at me like a teenager or, you know, ok I was a little bit older than that. But they looked at me and they were just sort of making judgements about me because of who they thought I was. And I didn’t, you know I didn’t want to be this. I didn’t want them to think of me as like someone who is just lazy or someone who is trying to get attention.

You know like I’m a young female. I lost a lot of weight so they started saying things about me being anorexic and it was just because they judged my age and who. You know, they didn’t know anything about me and I felt like, you know, I just wanted to scream at them and say, ‘No that is not what’s happening. But I think, you know, I’d want to say to them just listen to what I am saying and try and make it easier for me to explain. And don’t just like make judgements on who you think I am.

But I think it’s also really hard for doctors to like appreciate when you’re making a real effort because I was so nervous, you know, I talked to the floor and I didn’t want to say very much at all. So then they couldn’t really engage with me and I think it would have been really helpful if like a doctor, you know the doctor had said to me, ‘I can see you’re, you know, you’re nervous and I can see that you’re making a real effort to be here. And I think like that’s the thing I would say. It’s that, like, acknowledge that it’s really frightening and acknowledge that it is really hard to talk to a doctor when you’re sort of talking about things that, you know, you’re not really sure what’s going on yourself. And I think like, you know, doctors always, they can come across as being very factual. They have lots of facts and often you don’t have any facts and you don’t know how to explain it in like big words. So you don’t explain it at all. And you know, then that’s really silly because if I had explained some of the things I think they’d have been able to help me more.

I think with eczema and my experience with knowing people with other skin conditions is that it’s very often treated as being cosmetic and therefore not as important and the only reason you want it to be treated is because you want to look a certain way. It’s like having a white filling, because, you know, you don’t want people to see your fillings or something. It’s kind of the same approach and I think especially with young people who have a, you know, a compromised image of themselves I think it’s important to not let them think that that’s all it is because that’s obviously, it means it’s very, you know, important to them.

And, I don’t know if that’s, you know, I might be saying something that they already know, but I think that’s important to make young people feel like it’s not it’s not just a superficial thing. And it affects, you know, how they feel about themselves and also like, you know, the choices they make and what they do and their happiness.

Tell them everything, like the doctors and nurses and don’t hide anything from them, away from the children with sickle cell. They might be young but just tell them what’s going on and how things are and what’s going to be happening and keep them up-date.

And you know, maybe like with me ’cause I never got any information on children and so my mum had to tell me about it. If they know information about if they have, if they get older and they’re having children what the effects will be. Like what effects will they have. ‘Cause I’d just give them as much information as you can and be supportive and just yeah, that’s it really. Just keep them up-date and tell them what’s happening, what’s going on and then they’ll be alright.