We asked young people and some parents to give advice to doctors and nurses about how to make things better for those living with arthritis. This is what they had to say:
• Talk to us, not just our parents.
• Take what we have to say seriously. We know how we feel better than anyone else.
• We are people, not “textbooks”, “bodies” or “diseases”.
• Be relaxed and friendly. Smile and have a good sense of humour.
• It is difficult opening up to a stranger. Get to know us and ask about our lives.
• Include us in decisions about our treatment.
• We are sometimes shy. Encourage us to ask questions.
• We are sometimes scared. Reassure us and tell us what can be done to help.
• Arthritis can affect us emotionally. Recognise this and find us help if we need it.
• Time is one of the most important things you can offer us. Try not to rush us out the door.
• Tell us everything we need to know about our condition.
• Use language which the person sat in front you will understand. Do not oversimplify or overcomplicate things.
It is important to be gentle when examining people with arthritis. They can be in lots of pain to start with and being rough can make them feel worse.
It is important to be gentle when examining people with arthritis. They can be in lots of pain to start with and being rough can make them feel worse.
Age at interview: 21
Sex: Female
Age at diagnosis: 12
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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 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.
When doctors diagnose someone with arthritis they need to explain what it is and how it may affect people in the future.
When doctors diagnose someone with arthritis they need to explain what it is and how it may affect people in the future.
Age at interview: 19
Sex: Female
Age at diagnosis: 13
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For a patient to really understand and get into you know; when you're diagnosed with a long term illness you can't just say, "Hello my name is….," and walk out. You need to sit there and support someone. You need to explain what is going to happen to them. What their future is going to be like, you know, give them a bit of background details, some…even if it's your statistics, you know, anything like that, anything that you can offer a child or person. Any information that you may have would benefit, you know, a patient drastically. What you might think is irrelevant might make a patient feel, you know, better or might make a patient accept it more. So I mean just being there and…I know, it's a professionally paid job but going that extra mile in a sense, that's what makes you a great doctor, that's what makes your patients respect and appreciate you. I've had doctors in the past where, I mean they're just doctors who've treated me whereas when I speak with my GP or my consultant I speak very warmly about them, I'm very respectful about them and I know that they have made the difference in my life. And doctors usually get into the profession because they want to change, they want to have the difference and help people and if that is the case you need, you can't just do what you've learnt in medical school, you need to go the extra mile.
People who feel scared are reassured by friendly doctors and nurses.
People who feel scared are reassured by friendly doctors and nurses.
Age at interview: 23
Sex: Male
Age at diagnosis: 18
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Yeah I think it should especially if a patient's young. I don't know about; it would probably feel quite patronising if you're eighteen and you know, things like that but when you're eighteen and you're in a hospital and you're scared because you don't know where, you know, you're going be walking like this, you know, shuffling eighty year old at you know, twenty seven. 'Oh my god,' you know, it's kind of like, 'aaah,' you know. I think you need a level of friendship because otherwise well I would panic and I've; there were moments, lots of moments of panic so I encourage it. I don't like the, you know, I've, there are, there are other nurses that I've had appointments with when said nurse hasn't been around, it's not been as good and I've not felt like I've got anything from it. And I like to go to an appointment and feel, well maybe not some at the moment because my arthritis is on like an even keel and there's not really much to say, but when things were bad it was, I preferred having something to aim for like more, we’ll do more hydrotherapy or we'll do this or maybe have you thought about another joint injection as much as I hate them and they're bloody awful I don't recommend them to anyone but I do recommend them to anyone. Yeah it's always nice to have the kind of friend, a friendly ear to make you, you less scared. Because you know a rheumatology ward is not like going to a children's ward. You know it's maybe, you know, there's rheumatology clinics for people that are under eighteen and you know and they're classed as a child but when you're eighteen the NHS instantly sees you as an adult so you have to go to you know, scary wards you know and I got admitted to hospital last year for a kidney infection and I ended up on you know, a ward full of old people because you know, they don't group eighteen to twenty four year olds together. So yes it's quite, yeah, there's not really that kind middle of the road gap for young people in the NHS so it's nice to have nurses and it helps that this nurse is quite young and she's, she's got teenagers herself and I think she's quite relatable and that you know, she, she'd worry about her kids if they were, you know, going through the same thing and it's nice that she's got a level of understanding.
See the patient as a person not a condition.
See the patient as a person not a condition.
Age at interview: 28
Sex: Male
Age at diagnosis: 2
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Okay I think the main thing is you know you must see the person, don’t automatically see the condition. Don’t see a body but see the person. Like I said earlier about you know if my consultant treated me by my blood results I’d be in hospital. So you know look at the individual. You know I mean too many times people are you know, I mean clinics these days it’s like a cattle market now. Going in there’s one out, there’s one in, there’s on out, you know. And the consultant sees, you know he might see 20 different people in a morning. But each of those people will be different and have different needs, and they’ll be on different medication probably and be of different ages. They all must be treated individually.
And if that means different information, more relevant information to them, more relevant course of treatments, and it could be anything. But that’s my big, big critique in today 2012, is that people don’t see the patient. They just see you know they just see a body part or a head, you know treat the individual.
Give people information that is age and ability appropriate.
Give people information that is age and ability appropriate.
Age at interview: 18
Sex: Male
Age at diagnosis: 14
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I think you shouldn’t be afraid to dumb it down. Because for me without sounding big headed I’m quite clever, so when, when I was 14 and I first went to the children’s hospital I found that they were dumbing it down a bit too much. And that annoyed me because well I don’t like things dumbed down for me, I’d rather know as much detail as I can, and if I don’t understand something I’ll ask for it. I ask what it means. So it’s never a problem with being too detailed.
I think give us as much information as the person wants. And if they say it’s too much then maybe you could simplify it. Well maybe suit it to their age range more. ‘Cos I think whilst I was at the children’s hospital it, I did feel more a child. I know it is a children’s hospital but it was a young person’s clinic, but that was for about 11 to 18, or 16. So I was always towards the upper end of that, and I’m quite clever as well so I always felt that it was a little bit dumbed down for me.
Sometimes people hide how much pain they are really in. Try asking them how they are feeling more than once.
Sometimes people hide how much pain they are really in. Try asking them how they are feeling more than once.
Age at interview: 20
Sex: Female
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Sometimes when, when the kid says I'm OK, just double check because they can, pride is probably a big thing with kids with arthritis. Like we you know we don't want to show we're suffering, we'd like to, you know, just want to feel that we're in control and then sometimes we're not in control but we still want to appear that we are and you know, it's difficult because we just, it does depend on the child but sometimes we just want to, you know, do it ourselves even though we really can't. We want our independence, we love our pride and you know, it's just sometimes, just you know, just ask, just you know, just to double check that we are OK because you know it happens to me all the time. Like I say I'm OK and I'm really not but you know my Mum would turn round with me and like, "Jas are you sure because in your face you look like you're in pain?"
It's like, you know sometimes we just, we just don't want to admit that sometimes we're in pain and you know admit that we want some help because you know especially when you're a teenager you want your own independence and you want to do things yourself and you know sometimes we do need a helping hand even though we really don't want it but yeah you know just, just sometimes just, if, get to know the patient you know the person with arthritis and everything and you know get the little, little tell-tale signs that they're not OK because it does depend on the patient. With me sometimes I just like just you know talk a little bit less than I actually do because I talk a lot, so it's you know, it does take time to know the patient but obviously it's a real, a long period that you will be with that person and throughout their life so yeah just get to know them and then you know, if they say they're OK you say, "I'm sure," they'll get a little bit annoyed but be like if they, you know, ask them again but you know, they maybe like if you like say, "Are you sure?" it'll be like, "Oh well there was this one time," and then they might you know, tell that there's actually something wrong.
People with arthritis have ambitions like everyone else. Keep these in mind when you treat them.
People with arthritis have ambitions like everyone else. Keep these in mind when you treat them.
Age at interview: 23
Sex: Male
Age at diagnosis: 18
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So yeah it was mainly because my usual nurse wasn't around; well it's just one nurse that I don't have a great relationship with. I've never really seen eye to eye, I don't know, it's not, I don't think it's seeing eye to eye I think it's just, I don't know maybe she; tried to explain to her one day how, well actually, I think, I shouldn't really say that; this nurse started off being my original nurse but when I started being quite insistent about that I was going to go to university and I was going to do this and I'd seen that other nurse a couple of, the one that I've got a really good relationship with, a couple of times and she was one of the nurses that was helping me with my treatment and I was actually seeing her on the unit when I was getting my drugs, not actually as a, you know, a consulting nurse at the time. It ended up kind of being switched because original nurse, or scary nurse as I like to call her, we just never saw eye to eye and I was trying to, trying to explain kind of the frustration of, 'I want to go to university, this is where I am now, unable to move, this is where I want to be at least to leave where, my home.' I didn't want to be at university close to home, that was not what I wanted and that's what she wanted me to have all, you know, it felt like that's what, 'Why don't you stay closer to home, we'll be able to monitor your treatment closer,' kind of trying to, maybe she was being more realistic trying to slow me down and that you know, 'this treatment's going to take forever, time is, you know, you've got lots of time, you're eighteen, we'll be able to sort it by the time you're thirty,' that kind of thing.
And it's like, 'Well no actually I'm eighteen, I want it sorted by nineteen,' you know and it kind of ended up being that my appointments not through me requesting other nurse started when I put my card in because they kind of put you with anyone who's free on the days. I started being seen by the other nurse a lot more and then now, well and luckily when I got put on the biological drugs, so the Humira (adalimumab), my current nurse was appointed like the nurse to do with those drugs so I have to go and see her now because she's in charge of that clinic for the biological drugs so I, that means I get to see nice nurse all the time because I'm on the nice drugs whereas scary nurse, well I don't see scary nurse anymore. I don't think I've seen scary nurse in two years now. I think she still works there but….she's just very not understanding I don't think and it just yeah, quite belittling really. Like you know, not, time wasn't her essence whereas I think for me time was the essence, it was the all of a sudden my life has stopped, it's quite big. Quite a big thing, there's no counselling involved, you're dealing with this yourself. You've got the rheumatology nurses and doctors to kind of deal with the treatment and get you kind of trying to function as normal but there's no emotional buffer so and it's nice to have a nurse that you have a good relationship with because it kind of acts as the emotional buffer. I can scream, I can shout, I can cry and tell her I'm pissed off with my joints and she'll understand whereas the other nurse probably just would have gone, 'she's crying in my office, someone take her out.' So …that's it really.
Trust is built up when people see the same consultant over time.
Trust is built up when people see the same consultant over time.
Age at interview: 26
Sex: Female
Age at diagnosis: 13
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I remember seeing different consultants which I found really hard, because as a young person you’ve got to trust someone and it’s really hard to trust someone when you’re in and out with different consultants. You build up a relationship but then you, you know that consultant might not be there the next time that you’re there, and it’s just how much does that other consultant know about you. Not your diagnosis, but as you as an individual, you know? Do they know that you’re, you know the reason you’re not exercising is not because you’re lazy but it’s because you physically can’t do it? Do they know that you’re as much; you know more pain than you were last time? Because you know what can a note sort of transfer into someone’s mind. They were amazing consultants but I think that, that was, I found that quite hard, whereas I also got introduced to my consultant in my local area because obviously he’d be taking over when I think I was sort of like 19 or 20 (they kept me on for quite a while) when I transferred across, and I was lucky that I’d been seeing him every six months, so he was in constant sort of liaison, knowing what was going on at the other hospital. So that was good, that was a good handover sort of for the period that they done that.
If the treatment is not working try something different.
If the treatment is not working try something different.
Age at interview: 20
Sex: Female
Age at diagnosis: 18
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So it’s really frustrating. Especially when, with the first specialist because it wasn’t making any difference what they were doing with the different medications and then I got all the side effects with the Methotrexate and things like that. But it wasn’t making any difference to my knee, though I would have been fine to carry on with that like if they said, like you might lose your hair, but it will always grow back when you stop taking the methotrexate. But I didn’t care it was like if it works, I will go with it, I will not have hair. I don’t care if it gets rid of that.
But I started getting all the side effects and it wasn’t helping. It made no difference to my knee whatsoever. And then I went back to her to them and she then decided to take me off that and put me back on the original medication, but I’d said that obviously it’s really frustrating that it’s not making a difference, and I don’t know if they were just a bit blasé about it, and it was sort of like a, “Oh right, okay well that’s not working. Let’s go back to plan And try that again.”
And it was like yeah fair enough but what about me, what about the fact that I haven’t been able to do what I want to do for the last three years, and you haven’t made any progress with it. Which I think was my breaking point with the first specialist ‘cos I was like, “No, I’m not happy with this. You’re just treating me as bad really,” and it sounds bad but it was like ‘cos she sees people with the same problems every day it was like you were a number or a folder on the side. And it was all just a bit blasé and it was obviously, and ‘cos I’m so young so when you’re in the waiting room and everybody else there is 50, 60 years old and you’re there with the same problems, and then the doctor doesn’t understand and treats you the same, and just expects you to get on with it, it’s really frustrating and really hard to, it’s yeah.
PART B
Do you feel that now you’ve changed consultants that you’re taken more seriously?
Yes definitely. ‘Cos the specialist I’m seeing now also has, from what I’ve seen has another patient about my age. I’ve only ever seen one, ‘cos I was there at the same time sort of thing, but he could have more but I feel a lot more taken seriously in the things I say, they actually go, “Right okay, well if that happens do this. Make sure you’re eating a lot of oily fish. A lot of things like that and keep your iron up,” ‘cos I’m slightly anaemic as well, so like, “Keep your iron up ‘cos if your iron’s low then your blood cells are going to be low and that’ll affect the medication.”
So they’re actually like you need to do this and this, and we’re gonna do this and this. If that doesn’t work you can look at instead of taking the methotrexate in a pill form, if I start to get the side effects again they were like well we can stop that and you could have it injected instead. Which should stop the side effects because you’re not digesting it. And things like that.
And it’s like right obviously that sulfasalazine level didn’t work so we’ll up that, if that doesn’t work we’ll look at taking a different route with different medication and things like that. And also looking to put me on a physio course to try, even though I’ve got restricted use of my knee, to try and build up the muscle in it ‘cos that will help. So they’re a lot more informative and a lot more helpful as it were.
People like to have a choice about their treatment. They do not always like to be told what to do.
People like to have a choice about their treatment. They do not always like to be told what to do.
Age at interview: 25
Sex: Female
Age at diagnosis: 13
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It’s never really about lifestyle. It’s all very much the medical side of things. Specifically with Professor, who I personally find to be very rude. I mean I, I have requested not to see him actually. I don’t like his approach. I think his people skills are lacking. I mean he has upset me before with some of the things he’s said. He’s too blunt in his approach. And I think that’s, that’s not the characteristic of a doctor or someone that you should be seeing for, for medical help if you like. But it ends, it turns out I have seen him again obviously, with just like, “Michelle will see Professor [name] today.” So I think that’s lacking.
So it’s a problem of communication, of interaction?
Yes, yes. Sort of I guess he’s a bit patronising. So I think when my foot starts to get really bad, I have to say, “Well, what, what can we do? I’m in so much pain.” He’s like, “Well, we haven’t got a magic wand.” And, you know, he’s just really quite harsh about it. And it’s like, “I wasn’t saying that. I’m just wondering if there’s anything else that can be done without surgery.” You know, he’s very sort of sergeant-major in his responses. Kind of, “Yes, do this, we’ll do this, we’ll do this” and kind of talking to his team and telling them what’s going on rather than talking to me about it.
I mean I’m not, I know we don’t sit down and have a chat about, “So how is your day? What did you do at the weekend?” I know that’s not how it works. But I have had rheumatologists in the past saying, “Oh, you know, how are you? And how are things at work?” And, and I think that kind of thing is really important because it builds up trust between the patient and the doctor. And I think that way as well the doctor can probably gauge how your health is. So if you say, “Oh, you know, work’s not great. I’m not coping. I’m struggling to get in in the morning” then that shows that you’re not so good in the mornings maybe and that your, your joints aren’t great, rather than just sort of, “Right, we’ll put you on this. We’ll do this to you and we’ll do this. See you in three months.” I don’t think that approach works at all. And, and that’s, that’s how Professor [name] seems to work and just sort of saying, “You, go and see [name], go and see him about surgery.” That’s, that’s not what I want to hear. But, you know, I’ve, I’ve told him I don’t want surgery. So I want him to say, “Okay, we’ll try you on this therapy” or, “How does this sound?” or, “This is coming up. You could try this at some point in the future.” You know, it’s, he kind of dictates what he thinks should happen rather than discussing it with you. And that’s a shame.
What parents had to say about doctors and nurses caring for their children
• Some parents are worried and want to know if they are doing the right thing. It would help if doctors and nurses reassure parents.
• Be patient with parents and take your time explaining things to them such as how medications work and their side effects.
• GPs need to learn more about arthritis in young people so they can recognise the signs. GPs who are knowledgeable about arthritis “are worth their weight in gold”.
• Listen to parents. They know their children better than anyone else so include them in discussions about treatment.
• Speak to the young person not just the parents.
• Avoid being condescending when speaking to young people. They know how they feel and how medication affects them.
Do not be condescending to young people. Respect their experiences and choices.
Do not be condescending to young people. Respect their experiences and choices.
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Well when we met her for the first time Charlotte said, “She looks about 90 years old. And them clothes must be like, you know, last century you know.” And she’s not cool and you know and everything else. And I just go, “Just listen to her,” and the first words she said was, “Hallo Charlotte.” You know, “I am, why don’t you come into my office and tell me all about it.”
And Charlotte was there and wouldn’t talk to her ‘cos she didn’t know her so Charlotte’s quite shy when she doesn’t know anyone. And she just, the consultant just sat there and smiled at her and said, “You really do want to speak to me, but you’re shy.” She goes, “I’m shy as well, so why don’t you speak to me and I’ll speak to you and I’ll tell you how my day went and you tell me how, how things are going. And so she’ll ask her how was school and Charlotte would respond, “Terrible.” And then she’d go, “Well why? What? You know teachers’ terrible, food’s terrible? You know I heard the canteen can be really terrible.” And you know and Charlotte would just respond to her and say no it weren’t the food, and then she’d say, “Well what was it? What was it that really made you feel like it was a terrible day?” You know and then Charlotte would say, “Well I was aching and the stairs were too high,” she goes, well you know, “Ah right, so you know did it take you a long time to get from the bottom to the top?” And Charlotte said “Yeah it took ages. By the time the bell went.”
And so then the consultant knew that you know she was having a real struggle. And she was just able to talk to her, not condescending, but in the way that Charlotte felt that she was, she was listened to, and that she could grab what she knew was the truth without you know, “Okay,” you know it was, it was a wonderful warm empathy.
She had a very warm empathy oh she didn’t pretend and Charlotte how Charlotte felt because she goes, “I’m not you, so I don’t know how you feel. But if you tell me then maybe I could try and together we can all try to make your life a little bit easier.” And Charlotte said, “Well you know I hate needles, and I hate treatment and Mum‘s not well, and I don’t like it. And you know I, I wish I wasn’t here.” And the consultant said to her, “You know some days I feel like I don’t want to be here neither. I get up and I don’t want to do this and do that” and, and she asked Charlotte how, how she felt about needles and Charlotte said, “Well I don’t like ‘em ‘cos they hurt and that.” And she goes to her, “You know one of the, one of the things about being a child, or a teenager with arthritis, or all through your life you will find that sometimes you don’t, you don’t have the power that you think you should, and sometimes you have to do things that are not nice for you, like does your Mum make you eat your vegetables even though you don’t like ‘em?” She said, “Yes.” But she goes, “There are vegetables that you do like, but some that you don’t like. But you still have to try them otherwise you won’t find out whether, why you didn’t like them.”
And Charlotte just, at the end of time up, she was, she just goes to me, “I like her,” and I just goes to her, “So do I.” I goes, “Why? Why do you like her?” And she said to me, “Well she didn’t treat me like I was five, and she didn’t treat me like I was 50.”
Talk to the young person, not the parent.
Talk to the young person, not the parent.
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I mean it's their sort of bedside manner if you like, they're so helpful and I, when I go with Bradley, you know, they basically, they're talking to Bradley not me. I mean he's old enough to know and they ask him, "Have you got any questions? Do you want to know anything?" It's a very relaxed atmosphere when we go and as I say because we have got to know them now it's not just, I feel like we're not just a statistic if you like. They, they know us, certainly the nurse, I mean she's so good and you know, not only does she speak to me sometimes, she's spoken to Bradley before on the phone as well if ever we've got any issues and she's very kind of gentle and understanding, reassuring, they just, they care, they do care and they certainly, they do know, they know us. Sometimes when you go to a doctor it's, 'Oh we're just another patient,' but they know the history, they do remember. Of course they've got the notes in front of them but we just feel that we know them better now. I can't, I can't even, I can't fault them, I think they're fantastic really, they do look after him.
Do not get 'rubbed up the wrong way' if young people know more than you about their condition. See them as experts and negotiate treatment with them.
Do not get 'rubbed up the wrong way' if young people know more than you about their condition. See them as experts and negotiate treatment with them.
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A hypopyon where you get a line across their eye. You know it’s not that common but so when junior staff or younger doctors and nurses have a 14 year old try and tell them what the what it is, or what she’s got, they, they sometimes get rubbed up the wrong way. Professional pride or whatever.
Yeah, so they like to say, “Well this is what you’ve got,” and you say, “Well,” or Elizabeth said, “Well I know what I’ve got.” So there.
Has that changed over time then?
I think it has because I remember the first time you know the doctors sort of looked at her; dismissed her almost you know just as a patient, not as a very young expert of her own condition. And I’ve got to say that the consultant we have with the NHS, there is a fantastic banter between Elizabeth and him and you know he’s obviously a lot older in his, but he’s been with her for 17 years and really you know they’ll negotiate medicine. You know and she’ll say, “Well I don’t want to take that one.” Or “I hate it.” Or, “The methotrexate makes me sick. I don’t want injections.” You know or whatever, “I want a strawberry flavoured,” And they’ll actually negotiate and say, “Well okay, you can’t have that, or you can have that.” And it’s really good.
Last reviewed November 2018.
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