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Jalé

Brief Outline: Jalé rarely saw the GP until she was 16, when she had muscle twitching in her arms and legs. She saw several doctors about these until one of them found a walnut sized lump in her neck some months later. Jalé had to have her thyroid gland removed and lives with hypothyroidism.
Background: Jalé is an ‘A’ level student and lives at home with her parents. Ethnic background / nationality: Mixed Race (White British and Black Caribbean).

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As a child Jalé said that she hardly ever saw the GP (local doctor). The first experience she recalled was having the HPV injection. Her mum was initially against her having it but Jalé was adamant that it was ‘a very good thing’. She recalls the nurse helping her feel comfortable by chatting to her and easing her fear of needles. 

Jalé usually goes to the doctor’s surgery with her mum, stepdad or a friend, and occasionally by herself. She finds it helpful going with someone that knows her well for support and in case there are symptoms she forgets to mention to the GP. Whenever possible, she tries to have appointments before or after college, preferring not to miss lessons. 

Jalé would prefer to see the same GP every time so she ‘wouldn’t have to explain everything’ to different doctors each appointment. But it was difficult getting an appointment with the same GP. Jalé said, ‘I don’t think I've actually seen my GP because, if you tried, then you'll wait even longer.’ 

In 2012, during Jalé’s mock exams when she was 16, she had muscle twitching in her arms and legs. This continued for two weeks. She decided to see the GP but was told that she was under stress and needed to relax. Jalé saw several doctors over a few months but was always told that it was stress. She felt that her appointments were rushed and that, being young, it was ‘quite difficult’ to get across what she was feeling. By February 2013 she had seen a GP about six or seven times, often because of stomach pain and low energy levels. On four occasions she was asked to take a pregnancy test before the doctor would continue with further tests. Jalé felt that the doctor would not have made her take so many pregnancy tests had she been older. 

On one occasion Jalé’s GP was unavailable so she was seen by someone else. This doctor diagnosed her with muscular back pain and found a walnut sized lump in her neck. Jalé worried that it might be cancer as her sister was recovering from ovarian cancer. The GP reassured Jalé and her mum, who was with her, that it was common for people to have goitres and referred her for an ultrasound scan. She recalled that the doctor was ‘so helpful’ and it was a ‘relief’ to finally find a GP who was ‘actually getting involved’.

After the ultrasound scan, Jalé went back to the GP and was told that she had several nodules in her neck. Although they didn’t look cancerous, she was referred to a specialist who told her that the she had multiple nodes on the thyroid, that it was ‘quite serious’, and that she needed to have her thyroid removed. Jalé had surgery to have it taken out. Looking back, she feels ‘quite confused as to why the GP wouldn’t look at a condition that’s so focused on hormones and energy’ and not link it to a thyroid condition for so long. She wonders why she was asked to take so many pregnancy tests if a different health problem should have been the doctor’s main focus. 

Since having her thyroid removed, Jalé has often felt tired to the point of falling asleep mid-conversation. She has also noticed pain in her arms, legs and stomach. Even though her thyroid medication was increased several times, which eased these symptoms temporarily, a few weeks later she always went back to the GP because the symptoms had come back. Although Jalé was given an urgent hospital referral to see a specialist, all of her test results came back as normal. She went back to see a GP after the specialist and said that ‘this isn’t good enough’ and that ‘this is clearly not normal’. She was told, though, that she didn’t need any further tests.

Jalé eventually found an online hypothyroid support group where she read other people’s stories of similar symptoms. She wishes that she had been told about the possible complications of having the thyroid gland removed and where to get advice and support. 

Jalé understands that a GP’s time is limited but being told, ‘Here’s a possible place to read up… Here’s a good place to look at’ would have made a big difference and her symptoms wouldn’t have come ‘as such a shock’. 

Jalé believes that an understanding attitude and patience ‘goes a long way in helping the patient’. She understands that GPs have a difficult job but feels that health professionals and young people should ‘sit in each other’s shoes’ and remember that both sides are dealing with difficult situations. Jalé feels that a good GP makes patients feel that they are not ‘just another number’.
 

After several appointments where Jalé had been told she was stressed, it was good to have a GP that referred her for tests. She needed a scan on a lump in her neck.

After several appointments where Jalé had been told she was stressed, it was good to have a GP that referred her for tests. She needed a scan on a lump in her neck.

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And she [GP] said, "And second of all, have you had an ultrasound?" And I said, "No, for what?" So my mum looked at me like, 'I'm sorry?' And I looked at her like, I don’t know what she's talking about. And so I said, "For what?" And she pointed at my neck and she said, "For that." And so I stood up and I looked…I went over to the mirror, and I found that there was a lump in my neck that was the size of about a walnut, and it was just out in my neck.

Whereabouts?

And it was just about there, so it was right near the bottom. And I thought, 'That's the most bizarre thing, especially for a young girl to not have noticed.' Like I spend half of my time looking in the mirror without being vain, and I hadn’t noticed. It hadn’t crossed my mind, it hadn’t crossed any of my family's mind, and my friends – it was just there. 

And so I kind of went, "Oh, like that’s…you know." And from obviously…most people, as soon as you see a lump the first thing you think of is cancer, and so I was very nervous because I'd also…my sister had previously just recovered from ovarian cancer, so it was quite alarming at the time. 

My mum was obviously instantly like, "Oh well, you know is that common, what is it?" And she said, "You know, it is actually common that people have goitres and, you know, we'll go and get her to have an ultrasound, and it'll be fine." And so she was just so helpful. It was just nice to have a relief like, 'Wow, someone's actually getting involved.' As soon as I walked in she's like, sort that out, sort that out, sorted, and out the office. So that was really good. 
 

Jalé’s symptoms wouldn’t go away. It was hard to describe them and the appointments were rushed.

Jalé’s symptoms wouldn’t go away. It was hard to describe them and the appointments were rushed.

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I remember I was sitting doing my mock exam, and I felt a pull in my leg, and I thought, 'Oh I must have pulled something.' But by the time I got home it was in my arm, and I was like, 'Well that doesn’t make sense; you’ve obviously not pulled something.' So, you know, they normally…you don’t rush to a GP when one thing happens, so I thought, you know, 'Maybe I'm just stressed out and whatever.' 

So I finished my mocks and that was a two week period, and it was still happening. So I turned up at the GP and I said, "You know it's quite concerning because it's jumping around everywhere." And she's like, "No, you're just stressed. You're very stressed out, and you just have to relax and, once you've relaxed, then it will calm down.' And that was it. I was out the office. 

And so I was like OK, you know, I am in exams. I did feel quite prepared so it was a bit funny, but I accepted that maybe I was just stressed, and I left it. And that was in November of 2012. 

So I carried on minding what I was doing and everything was fine, and it just kept building, but every time I went back I was told, "You're just stressed, you're just stressed." And I think that’s when I started to feel a bit…I thought…I started to feel that, in being a young person it was quite difficult to get across what you were feeling because it was kind of rushed like as well. If you're in this age bracket, it must be growing pains or it must be stress, and that’s it. So...but yeah that was a bit tough I definitely could admit [laughs].
 

Young people have lots of pressures and expectations. They may be going through a roller coaster of emotions. Giving them information helps.

Young people have lots of pressures and expectations. They may be going through a roller coaster of emotions. Giving them information helps.

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For young people I don’t think we need to be treated like children, but I do think it's actually more to be aware of the lifestyle that we're kind of in, and the things that we're expected to do and how we're expected to be. And actually that we are still learning ourselves about ourselves, at the same time as you're telling us [about the condition]. 

So, you do have to kind of put all the pieces together. But I mean, to be fair, I could say that about any age group for different things. But especially at that time anyway, so you’ve got a lot of pressure going on as it is. 

Emotionally they're probably on a rollercoaster, and you just need someone who actually will sit there and go, "OK, you know this is what I can advise you." Because the worst thing that I think is – say something's wrong and to be left with nothing, even if it's the tiniest thing in the world, the tiniest possible ‘maybe try this’, at least gives them a little bit that you’ve actually tried to give them what you can, and I think that’s really important just to make people feel a little bit like they have, you know, they’ve been acknowledged. And they’ve been understood even if you can't find something.
 

Jalé was given very little explanation about the long wait. It seemed ironic to be told by the receptionist to be as quick as she could with the GP.

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Jalé was given very little explanation about the long wait. It seemed ironic to be told by the receptionist to be as quick as she could with the GP.

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There's only been one really long wait that I can actually remember, and that was I actually sat…I must have sat for an hour and a half, if not two hours. And there'd apparently been five emergency calls that morning. And they were very low staffed because I think it was either near Christmas or just after the New Year. And so they obviously weren't in the, you know, doctors were on holiday and stuff. And I remember that there was a woman, and she had twins and one of them had a cold, so he was absolutely screaming like there was no tomorrow. 

And so she, you know this woman next to her went up and she said, "You know how many more have I got in front of me?" The woman said, "You’ve got two or three." I can't remember what she said. I think she said two in front of you. And she said, "Right, well I can't wait any longer, you know, I have to go." 

So she left, and then that left somebody else, myself and the lady with the twins. So, not long after the lady with the twins went up. She said you know, "How many more in front of me?" And she said, "Two or three?" 

So I went, I said, "Am I the lady in front of this one?" And she said yes. I said, "Well can you swap us please because clearly this lady needs to leave; she needs to be seen and she needs to go." And they said, "Yeah, that’s fine." So she did that and the woman was like obviously very thankful and stuff. 

So she went in, then she came out, and so I waited for myself. And then somebody else went in, and I was so, I was like ‘‘huh’’ you know, I'm meant to be next. 

And apparently another emergency call had just come from nowhere. And I thought, 'OK obviously I don’t need to know anyone's life story or anything but, you know, it would have been nice to have been told that, you know this doctor has to urgently see someone, please wait.' But I was just left to sit there. 

So that person was in there for a good twenty minutes/half an hour, so I sat even longer, and then was told, "OK well we're a bit behind today so please be as quick as possible." And we all just kind of carried on. I thought, 'I've sat here for two hours. I did my thing as a good citizen and let the woman go in front of me who needed to. And then just suddenly another woman just came out of nowhere, and she just walked in and went straight into the doctors. And I've been sat here for two hours with my friends taking pictures on Snapchat. It's a bit crazy.' 

And it would have just been nice to at least know that somebody else had to come in urgently, and I was like…I wouldn’t have been happy about it; it wouldn’t make it any better, but it meant I would have known. And then there was just like, "Oh yeah well we're running really late, so please be as quick as possible." Like, I've been sat here for two hours. I think whatever I need to talk about needs to be spoken about [laughs].
 

Patients may feel stressed and rushed sometimes. It’s quicker to get the process done when the receptionist is calm and understanding.

Patients may feel stressed and rushed sometimes. It’s quicker to get the process done when the receptionist is calm and understanding.

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I think there's only one…there's only one, or possibly two, receptionists that if I see at the desk in the morning I think, 'Oh this is going…you know this…I'm going to get quite a grilling before she even thinks about typing my date of birth in.' And you know what's going on. And it's reached a point where I think it's either difficult. Before I know only one… there's one appointment that I asked, and she said, "What, you know what's wrong?" And I said, "It’s private." And she said, "Fine." And she got on with what she was doing. 

But there's one or two that if I think, if I said that, I would feel like there would still be another question, there would still be something else. And obviously that’s not pleasant for anyone in general. And so I find that quite difficult because it's kind of like very snappy and kind of de de de, getting on with it de de de. 

And but then on the other hand… on other occasions, you know, somebody can sit in and she's like, "OK what can I do for you today de de de?" And that just makes it just easier to kind of… even just think straight off what's going on. 
Because if somebody's snapping at you, you're trying to get answers quickly, it constantly frazzles you and you don’t really think about what's going on. But someone clearly looks like they're understanding what you're going… and just, you know trying to ask you generally what's the problem de de de. You just kind of get the process done actually quicker because you're not then stressing and thinking. And when they're going, "Oh, well next time he's free is on de de de," and you're trying to think what am I doing that day, or what… you know you haven’t got your calendar straight out or something like that. 

Then you're just constantly feeling like even at reception you're on the clock, and you can't even think to say, "Is that a date that I'm even free?" so you say yes to something, and then think, 'Oh, I'm not even free that day, but now I've said it, and if I don’t go that day I'm not being seen so I have to go.' So I do think it's really important, as a receptionist even to take just that bit… just you know, because the calmer you are, the calmer the person is to actually be able to work out what they're trying to get across. 
 

Jalé went to ‘serious’ appointments at the hospital with her parents. She often saw the GP with a friend or by herself. Sometimes it was just to collect test results.

Jalé went to ‘serious’ appointments at the hospital with her parents. She often saw the GP with a friend or by herself. Sometimes it was just to collect test results.

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Have you always been to see the GP with someone, or do you sometimes go by yourself?

Every now and then I'll go by myself. I think at, say if I went on a ratio, say if I went like twenty times, I will probably only four times go by myself. And most of the time I'll go with…even if it's just a friend's support, just because sometimes it's quite difficult especially with something so complicated, it's quite easy to forget symptoms and forget moments. And if you're with someone who's with you all the time, they’ll be like, "Oh yeah, and also this is…" And it kind of helps you to remember it because it's just too much of it, and you know you're told to write stuff down, but you just don’t because you forget even that you’ve been told to write it down, let alone remember the symptom. 

So sometimes it's helpful to have someone who's, you know, around a lot to talk to. And then just in general just for a bit of support when you're trying to get across what you're doing.

Do you prefer going with a friend or with parents, do you have any preference?

It depends what it is. When I go to the GP I'm quite happy to go with a friend because it's not that serious, and normally it's results on a blood test, or I'm just saying what's going on. 

But it's when I see specialists and stuff like that, that’s when I prefer to have my parents because that’s when larger terminology is being used, and this test and that test and stuff has to be arranged. And that’s the sort of stuff where I kind of feel I need my parents because that’s when it kind of seems more serious because actually your parents are worried as well, and you know you're not just coming in because you’ve got a bit of stomach ache. 

But when you're seeing a general practitioner it's just that, "OK what's the problems?" And they’ll send you to work out where you need to go next. Do you need a blood test, do you need that. So, it doesn’t seem too harsh.
 

Jalé felt nervous about seeing the GP. She thought he would ignore her but he referred her to hospital.

Jalé felt nervous about seeing the GP. She thought he would ignore her but he referred her to hospital.

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I was reading through and I was learning about all the different hormones and all the different problems. So I thought, 'OK I'll sit and highlight every symptom that’s in the book that I feel I have.' So I sat and highlighted them all. I went through all the different conditions and highlighted them ones. 

And I thought if I take this to a doctor, they can't ignore it. It's, you know, it's right there. And as I was reading and I was asking other people [on an online support group] , find out what they'd been going through and stuff like that, I found that a lot of them were actually being ignored and I was thinking, 'Well, you know, how's that possible?'

And so when I went back to the GP just recently, I did feel very nervous in thinking, you know, he's just going to ignore what I'm saying. I'm not going to get seen by a specialist. He's just going to say, you know, "You're fine." And he took his blood test and he said, "You know, your T4's fine, but you are a bit low on your TSH, do you want me to up your dosage?" 

So I said, "I don’t want anyone to up my dosage anymore because the more they up it, the worse I feel. And I would just really prefer to have a referral." And he said, "OK that’s fine, I'll give you a ‘book and choose’, a book." And so that’s what I did, and then I was told wait until I could be seen in July. 
 

Jalé felt that the doctors were ‘patronising’. They seemed to ignore the other symptoms she was describing, apart from stomach pains.

Jalé felt that the doctors were ‘patronising’. They seemed to ignore the other symptoms she was describing, apart from stomach pains.

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Do you feel that you're always taken seriously or listened to because you mentioned that, at the beginning, you went quite a few times before?

Yeah, no I don’t think I always have. I mean the first, when I was a lot younger, it was, "You're stressed or it's growing pains." And as I've got older just before, in fact just before I was seen for the ultrasound, and I was telling them I was having abdominal pains, I was asked to take four pregnancy tests. Every time I went there, I was told to take a pregnancy test before they would continue talking to me. And it was like…

Was this by the GP?

Yeah, and it was like it's on your screen that I'd clearly had a pregnancy test twice, and it's come back negative twice. Unless you don’t appreciate your own work, then clearly that’s not the case. And clearly you need to be talking about something else. And literally they just would not talk to me and would not absorb what I say. As soon as I said abdominal pains he said, "Well I think we should check." 

And the first time, I think if anyone, woman, said that, I completely understand. The second time, fair enough sometimes they get it wrong, fair. But after that I was just sat there like this is actually ridiculous now. Like it's reached the point where you can see it on the…it's not like you don’t even know that it's happened. You can see it on the screen that it's, you know, it is what it is and actually I'd like to be spoken to like an adult going through what I'm going through. 

And...but I then I kind of felt like I had to kind of do it because, you know, that’s the doctor and the doctor's not going to continue this conversation until I've done what I've been asked to do. And I just felt that that was completely just unfair. And I felt, if actually I'd have been older, I don’t think I would have been asked to take four pregnancy tests just…

So it's the four times that you went in?

Yeah, so the four times I went in. Before I was spoken to, they would check my records, ask when I was last seen, and then ask me to take a pregnancy test.

There? They would give you a…?

Yeah, so well they'd give it to me and then yeah I'd go. Well I'd still be there but I'd go and take a pregnancy test, come back in, then they do their dip and la, la. And they go, "Oh OK well you're not" and then carry on. And I was just like, "Well I know I'm not; I could have told you that myself," you know there's a…

They kept going back [talked together]…

Yeah, I just kept going and going. And that was all they could come up with. And I mean I was going back again and again at the beginning, and it was just stress. And then when I'd been going back again and again since, it's just, "You must be pregnant." And it's like, "No there are other problems."

Yeah, how did that make you feel?

It's…I find it more patronising more than anything else because it's just like, is that the only solution you can have for a young lady whose got anything wrong with her stomach. And surprisingly enough actually, most of the pain has moved from my stomach now, so it's the last thing I'll mention, so that’s not the first thing that comes out. 

But it is just the most patronising thing to come out with because, to be fair there's other questions you could ask me that would have secured you the fact that I'm not pregnant. And it's just like that’s the first thing you come up with before I've even finished talking, it's, "Oh yeah, you must take a urine sample, you must be pregnant." 

And you reach the point where I might as well turn up with my own pregnancy test and just go, "I'm not, so can I carry on talking now?" And it is, it just feels like a complete disregard to everything else you’ve said, like you're not absorbing the fact that, yes I've said to you I've got abdominal pains, but I'm also telling you that I can't sleep. And I'm also telling you that I feel quite depressed. And you're not taking any of those on. You're just taking the one that will quickly get you out of the office." Because if I turn out to be pregnant then it's, "Oh you're just a silly girl who didn’t know she'd end up pregnant." And that’s not the case for everyone. You know, you can't take it all the same.
 

Good GPs listen, advise and reassure. The patient isn’t rushed or made to feel like just another number.

Good GPs listen, advise and reassure. The patient isn’t rushed or made to feel like just another number.

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What would you say makes a good GP, what are the qualities of a good GP?

For me, having seen most of the GPs at my clinic now, I think that it's the ones that will listen to what you're saying, because I know on some occasions I feel that they will kind of jump on something you said before, you’ve kind of finished, and I find that quite difficult because you kind of forget what you were going to say. But they will listen to what you're saying; will give you advice on what to do whilst you're waiting [for test results or hospital appointments], because waiting is always so long whatever you're doing. So, you know, whether it be just try and eat something or de de de. And will just, you know, will make you feel as though you're not just another number, sitting in their chair and to get out as soon as they possibly can. 

Even if they can't do anything for you that day, or even if it is, they're not concerned about it, to actually have…take the times you know, "This is what's going on; you're absolutely fine." Or, "This is the next step." Just because you don’t want to feel like another number because it always, whatever the result is, you do kind of feel like you’ve just been brushed out. And obviously they see, I don’t know how many hundreds they see a day, but you know that’s the kind of job you’ve taken on. So I feel it is important that you take every patient as a patient. And they're not there because they want to be there. They're there because they're not well. 
 

Because of Jalé’s symptoms and the fact that her sister had had cancer before, Jalé felt that the GP referred her to hospital quickly. She had several tests.

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Because of Jalé’s symptoms and the fact that her sister had had cancer before, Jalé felt that the GP referred her to hospital quickly. She had several tests.

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I went back again [to the GP] and they upped it again [medication dosage], and I went…But then as I started to notice is the more they were upping it, actually the more tired I was feeling. And it was getting more and more.... So I was thinking, 'OK that’s, you know, that’s a bit bizarre, that doesn’t make sense.' 

And so I was fine for about six months after I got on to a hundred micrograms; that was fine. And then just recently it started to then build up again, that I now get more and more tired, and I get the pains in my arms, the pains in my legs and pains in my stomach. And it can reach some days where I'm really tired that I will fall asleep mid-conversation. So I'll be talking and I would just…I just can't…and would just shut down. 

And so I went and I spoke to the GP and I'm like, "You know, I'm really worried." And I was having really severe abdominal pains, so I was really worried you know, after my sister's history and after everything that’s going on, what's going on. So they said, you know, "Considering your sister's history, we will go and give you an urgent referral."

How old was your sister when she was diagnosed [with ovarian cancer]?

She was seventeen, so yeah just before her eighteenth birthday. And I was now eighteen. So the worry starts. So, you know, they did say, "OK we'll go and get an instant referral." And so I went back to [name of hospital] again, and I was booked for a CT scan. And what else did I have that day? I had a CT scan and I had…I can't remember what it was called, but it's a gastro something, I can't remember what it's called now, but with the camera. 
 

Jalé is aware that some people go to A&E for minor things. When she had severe stomach pain, she was scared and wanted to know what was causing it.

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Jalé is aware that some people go to A&E for minor things. When she had severe stomach pain, she was scared and wanted to know what was causing it.

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At one point when I had…I'd completely forgotten to actually, just thought of it – one point that I had the severe abdominal pains I actually ended up in A&E because I couldn’t sit up. I was in so much pain I could not sit up. And they…the first nurse took it very seriously, and she was like, you know, "What tablets do you take, like what painkillers do you take, what do they do, do they help or do they not?" And she said, "You know, I've taken everything. I understand they're not helping. I can't sit up. I'm actually scared that I might go paralysed." 

And by the time I got to see the next doctor, he kind of looked at me as though I was a little girl coming in with a stomach ache. And I was saying like literally, when somebody's saying to you for the last three weeks they’ve not been able to sit up properly without feeling pain, that’s…it's not a normal stomach ache. It's not, you know, it has to be taken seriously. And it was only when my sister said… my mum said that my sister's had ovarian cancer and we're now worried, that he kind of had to take it seriously, and then moved on with it. But, obviously I'm more than aware that some people do turn up at A&E with the most silliest things in the world. 
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