Can you explain what a long term condition is?

Okay, long term conditions are things that we can treat and look after but we can’st make them go away. So that will be things like asthma, diabetes, high blood pressure and some conditions that happen like a stroke, so people get a little bit better but they don’st get better completely. In that situation they need care for a longer period of time and also monitoring to make sure the condition is as good as it can be.

I went to see the nurse, well, one, because they do blood tests for our like reviews and stuff for type 1 diabetes. So you don’t need to see the GP for that. So that’s usually just the nurse.

And then also my diabetic review was done by one of the nurses as well. So, yeah, that was, that was fine, completely fine. She had all the information she needed and she was a really, a really nice lady.

Anything they can do to improve the service?

No, not that I can think of. I mean I was, I was fortunate that I had someone who was very knowledgeable, for one. And two, was just very, kind of made sure that I was okay before I left, that all my questions had kind of been answered or, if there was anything else I wanted to talk about. So, yeah, that was a good experience.

I was diagnosed about five years ago, after kind of about six to eight weeks of just feeling really run down. I was really tired all the time, struggling to get upstairs. And I was going to the toilet fairly frequently, and getting up in the middle of the night to go for a wee. And my dad’s a GP and obviously I’d been kind of saying how tired I’d been feeling. And he suggested I go to the, my GP, just to make sure that everything was okay. He thought maybe I had glandular fever or something.

And so I made an appointment and kind of described my symptoms. And the female GP who was there at the time, she took a blood, did she take a blood sample? No, she definitely took a urine sample and asked me loads of different questions. And kind of I sat in the waiting room for five to ten minutes. Got called back in, basically to be told, You’re type 1 diabetic. You need to go to the hospital. Here’s the number. On you go. [laughs] That was my experience of that.

So it was a pretty immediate, You need to go to the hospital to start an insulin regime. Because they don’t offer those kinds of things at the GP surgery. I had to go specifically to the hospital department, diabetic and endocrinology department. Which I did.

And, you know, at the time I didn’t really know what type 1 diabetes was, what it meant. And I found the GP was quite abrupt and just said, you know, well, this, my recollection of it was, you know, You’re type 1 diabetic. You need to go to the hospital. Goodbye type situation. Which, looking, like when I look backed, look back on it, you know, and obviously discuss with other people, they, you know, people are pretty shocked that that’s how someone would choose to deal with a pretty life-changing event.

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 lookedI 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’syou know.” And from obviouslymost 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 alsomy 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.

When I was two and a half at the time, my mum noticed, because I’d been a healthy child otherwise, she noticed two joints which were looking a little bit strange. And my mum was under the rheumatologist at [place name]. So she took me to her consultant, and back in sort of 95/96, JIA [juvenile idiopathic arthritis] wasn’t as well spoken about as it is today. So he said, I think I’ll refer you to one of my colleagues and it was done outside of the GP and they referred me to [name of] hospital.

And I saw a paediatric rheumatologist and then that’s when they said to my parents that I had arthritis, which came as a bit of a shock to them because it was so unheard about, you know, a child with arthritis. And I remember my mum telling me that they were on the ward and there were babies with arthritis, and she just couldn’t believe it.

So I started being diagnosed, they didn’t put me onto any treatment because I was relatively well. And I just had to carry on as normal, as a normal child, going to school. And it was only when I got into Year 1, Year 2 of primary school, I had tonsillitis, and at this time my GP had left. I was without antibiotics and I flared up to every joint and was in a wheelchair, unable to move. And had to go back to hospital to have the joints drained and be admitted for the steroid injections.

So that was, that was quite hard as a child, being seven, not really knowing what was going to happen. Lots of visits to hospital. Missing school. Having to catch up when I came back and at a young age, that’s quite hard because you’re missing out on a lot of developmental stages in primary school.

I actually realised, I didn’t know that I couldn’t eat fried food, pasta, normal rice, salad, fruit. So these were all the things that I bought regularly. So things like spaghetti bolognaise, lasagne, curry, Chinese, I’m gonna have an Indian out. So it was so, so bad.

But the thing is I could never really, I guess it’s more when you have to do something that the effects become more worse. So I could eat and go home, but I would wake up and I would just think that I just needed to go toilet.

But then I actually realised as time went along, the more of the food I eat that I’m not supposed to, the worse my stomach gets. So it’s like, it’s like if you had a little portion of pasta, it’s as if you’ve eaten the biggest meal. And I would feel my stomach spasming like constantly. And then I would feel my stomach echoing and that’s when the wind would start.

So and if and this is why it’s difficult for me because if I’m at home, I can release it. So I can sort of control it. When I’m at work, I can’t release it. So it all builds up and builds up. And then if I don’t go, like if I don’t pass my faeces when I need to go, then I’m constipated. And it will just be like this, I can feel it wedged in my intestine. And then the gas, it goes up into my gall bladder and my gall bladder pops up.

So it wasn’t too long ago I actually had to go to hospital because we thought it was going to burst. So we thought we was gonna have to remove it. But they turned me a few ways and [laughs] obviously my wind come up. But that’s the sort of things I have to do. So I have to, it’s horrible, it is really horrible.

And painful?

It, it’s painful but it’s not a normal pain. So, you know, if – can you imagine having really bad wind and that? It’s like a mini stitch. And then it gets worse and worse. And I think it makes your stomach feel empty but full. And because there’s so much air, it feels like you’re just empty. But because it’s where you’re bloated it’s just, it’s so confusing.

I was fourteen when I was diagnosed. But I did have symptoms for over two years beforehand and started to notice these things weren’t right. So I thought, I’ll go to the GP. And tried to, you know, tried to explain what was wrong and he referred me to gastroenterology straight away. He was like, Let’s get this sorted out. You’ve got arthritis and you are more likely to get another autoimmune condition. He said, You know, there are so many different things that you could have. You know, we don’t know. We need to do the tests properly.

So I went to the hospital and it was at the hospital where I was actually delayed at being diagnosed because of quite a lot of excuses, I don’t know, you know, back to me saying. It’ll not be anything inflammatory, you know, it’s probably constipation. He needs to give you laxatives.

And I used to take them and it wasn’t getting any better. The pain was bad and I was still passing blood as well, and it was this to and backwards and to the hospital. And my mum was supporting me at the time, you know, I was twelve, thirteen and she was really saying, Something isn’t right with my son, you know. She knew I wasn’t right. And I was saying the same but nothing would be done, and it did take another two years for them to say, Right, we’ll do a colonoscopy to see what is wrong. They did a colonoscopy and then an endoscopy and he came back to me after they’d done the investigations and he was really apologetic because he said, I never knew it would be so bad.

Right. But it took them two years?

Two years to actually do them, them camera investigations, which if they’d done them two years beforehand they probably would have caught it but it hadn’t of, hadn’t have done as much damage.

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 normallyyou 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 bitI thoughtI 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].

So if they’re with the parent, it’s good to include them, but talk to the young person. It’s their appointment. It’s also good to try and think, you know, we’re helping young people and, you know, all the doctors that have been people without a training in medicine.

So it’s good to try and think, Right, instead of coming out with all these fancy words and acronyms, let’s just take a step back and just, you know, don’t dampen it down too much where it’s, you know, too young an audience. But you’ve got to look, you know, if you’re talking to a seven year old, you’ve got to talk differently to a fourteen year old or perhaps a twenty year old. It’s about the way that your approach a conversation and just think about, you know, making it age appropriate, which is what, you know, it’s an ability to be able to do.

But I think that should be brought more into the training process to, how to talk to patients perhaps without lots of fancy words and just, you know, get the message across. But don’t make it too complicated.

Have your own GPs been good in that way? Your GPs over the last, you know, since you were three?

Yeah, so as younger, younger person, they used to talk to me in a nice easy to understand way. Sometimes you know they’d say, Oh we need to be an ESR and a CRP. And when I was ten, that meant nothing really. [laughs]. If it was, you know, We did the blood test, it shows if your arthritis active.’ I would have understood that.

But as I was growing up into teenagers, it was me saying, Are you going to do my complements. Because I do science anyway and naturally engaged into the condition and I would ask questions and they would realise. Oh, he understands this and we can talk a little bit more complex perhaps to him. So it’s looking at your patient and thinking, How can I get this across to them so that they’ll understand?’

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.

And you’ve talked about going to the GP because of the long term conditions. Would you consider going to your GP, for example, if you were feeling stressed about the condition, or feeling stressed about work or exams or things like that?

I must admit it’s something I’ve not done. And I’ve got stressed and you, sometimes you just think, Well, I’ll get over it. And sometimes you think I’m too busy to think about stress, which makes you more stressed.

Would you be more likely to talk to friends about that sort of thing than to talk to a GP?

Probably to closer friends, I’d say, you know, I’m more stressed and I have mentioned to the GP a few times that I’m really fatigued. But the problem, you know I’ve just had the response back, Well there’s nothing we can do about that, unfortunately. Which is, just adds to the stress because you’re so tired, and you’re told well do less, do less things. But, you know, I’m still a young person and I should be able to do all the things a young person without this condition could do.

But sometimes it is, it’s a funny thing to talk about stress, and I think we need to get better at talking about it and realising, you know, it can affect our lives and our health.

Sometimes if GPs perhaps asked, How are your stress levels? How are you feeling? You know, do you think you might need any support or you need to talk about things? And sometimes that GP, or, you know, somebody talking to a patient about that will just help them to open up a little bit better.

So you think GPs could be better at asking people, young people or people of all ages?

People of all ages, but particularly young people. And, you know, people who have a condition as well, to actually not think about, you know, the stress and the psychological side because it can really get pushed under the carpet. But if they are more likely to show some signs of, you know, sharing, you know, thoughts of how they do feel. And it is, it’s a hard subject to talk about. I think if that conversation’s started it will help.

And you, you feel the conversation should be started by the GP by asking the question, How are your stress levels?

Yeah I think, I think it would be good. Some people may go into their GP surgery and say, I’m feeling really stressed. But not everybody does have that the confidence to do it. And just by the GP put it subtlety into the conversation, you know, how are you feeling? Are you feeling stressed at all?’ So they don’t feel it’s something they should be ashamed about. They shouldn’t feel guilty about it. And that’s important the way that the GP approaches that question really.

I’d say for children and my age sort of thing teenagers, a bit older, I think you’ve really got to listen to the patient. Don’t, you know what I mean, actually listen to them. Let them say what they want to say and actually go from there, and use that because quite often we don’t get like that’s the thing with the Voice of a Child that we’re doing, is we’re trying to get children’s voices heard. Because, you know everyone, like it’s always been a thing that oh adults are superior than children in a way because, you know, I mean they’re older, they’re more wiser. But actually, I’m sorry but if it’s their own health, they know.

Like, and there’s things that I’ve been through that I think, ‘Oh, I think they could have done it this way. And it would have been a different story basically. I think they, I think any professional in health could learn from someone like me just to be like, ‘OK and show me the way you do it,’ and then be like, ‘OK, what if you did it this way?’ And then they’d realise yeah OK whatever.