How would you feel if the surgeries had like slots in the evenings, six till eight or whatever, once a week or something, just as a young people’s clinic?

I think that would be useful for young people because it would be nice for them to meet other people perhaps who are suffering from other similar conditions. And that’s a great way for them to get together to share experiences, share how they do things differently. And it may just help them because sometimes if a young person goes to a GP surgery and they’re the only young person there, you know, they’ll sit in a corner and not talk to anybody. Whereas if it’s somebody of a similar age, they’re more inclined to talk and it could be beneficial to them really.

And in terms of young people, what were, what would you say were the main reasons they might go to the GP? Do you have any thoughts about what sort of things are most likely to affect young people?

I mean it’s sort of difficult because when you’ve got young people with long term conditions, the reason why they go to the GP are likely to be completely different perhaps to what other young people might go to the GP with. So I’ve known people who’ve gone to the GP because they’ve had a few aches and pains. Whereas, for me, I wouldn’t go to the GP with that because I’m used to it. So there’s, you can definitely see the difference between young people who are healthy and those who have got long term conditions as well. I think there’s some cross, crossing things perhaps, like young people might go to the GP, you know, development reasons, and sexual health perhaps.

In an ideal world, would you prefer it if the GP surgeries were open longer or ?

Definitely. So my GP surgery closes at six o’clock. So, I work in [place name], so I don’t get home until eight o’clock at night. So when I have an appointment I work from home, I’ll take the day off, or have the day off, which is an inconvenience to the company. It doesn’t add to the economy at all really. So having them longer hours and, you know, weekend hours as well would be really helpful for the patients who are working and trying to contribute to society. To help them just to fit it into their lives really.

Yeah. So, ideally now they close about six, six thirty how late would you like them to stay open?

Even if it’s perhaps not every night of the week but perhaps, you know, nine o’clock really would be ideal. You know, even if it was two to three nights a week perhaps. Just so, you know, there’s one day when they’re open late and you can try and book an appointment on that day really.

What are the kind of qualities that he’s got, or other GPs who you’d consider good, what are the kinds of qualities…

So, somebody who’s approachable. Somebody who understands the condition and understands you as a person. Somebody who communicates really well. So makes sure all your letters are up to date. Keeps you up to date with blood results, and then somebody who when you go to the appointment, doesn’t try to rush you.

And I know, you know, they are restricted by the times but, some GPs I’ve been, I’ve been in two minutes because they just wanted to give me a prescription and then go straight out. Whereas he talked to me, said, you know, What’s been wrong? Let’s do these tests and let’s see what they’re like and then come back and we’ll take it from there.

So he was very sort of nice and didn’t worry you. So it’s like, you know, We’ll take things one step at a time. And just that reassurance as well, that’s really important. Instead of worrying the patient. He thought about what he said, which is really important. I think that’s a really good quality for any GP.

And you mentioned a couple of times that he’s been, he’s gone the extra mile and he’s been proactive hasn’t he?

Absolutely.

Suggesting things you’d never thought about.

Yeah. And, you know, going to him saying, I’m not feeling quite right. And him saying, Have you ever had this test? And I said to him, I don’t think so. So he would go and look. So he’s, Let’s do it and let’s see, what’s wrong. And most doctors say, Ring back up in a week when the blood results are back. But within a couple, it was two or three days, I’d get a call and it would be him saying, I just got your blood results and this is not quite right. So I was low on Vitamin D at one point. So he said, There’s a, you know, there’s a prescription for Vitamin D at reception. Pick it up and you can collect the tablets. So it was that, without me having to go back for him to tell me that. So that was really helpful.

And he understood I was at College as well so there wasn’t much time to having to keep missing, you know, because I had to catch up in College. Where I could just go after College, or get my mum and dad to pick up the prescription for me. So he just thought about, you know, Let’s make it a little bit easier for this person really.

So he was proactive in terms of all the tests and medications but you mentioned he was also proactive in telling you about things that you could, like the compensation thing that you mentioned at University or at School if you’ve got exams and?

Yeah, so you know, he was really good at seeing me and I explained that I wasn’t doing so well and he said, Oh, you have exams. And it was like, he made sure that he conversed with me what I did outside of having the illness. And he said, you know, How was you doing your exams? And I said, Oh, I wasn’t that great, and you know, I was not feeling well at all. And he said, Oh you can get this, because I’ve done it with another patient. Will you be happy for me to write to your College to explain that? So there was that openness and actually asking, You know is it okay with me? And he says, I’ll do it all. I’ll write everything for you and I’ll send it off and if you have had a bad day and you might not have done as well as you’re capable of doing, that shouldn’t impact on your grades.

Did your parents or you occasionally leave a letter and then he would get back in touch?

Yeah, so I had to take, I went on holiday to France with a charity when I was about ten, and I needed authorisation to take the medication on the plane. So my mum did that, wrote that letter and dropped it in, and straight away, within a couple of days, he’d wrote a letter. He rang us up and he said, you know, This is what you need to do with it. You need to show it to such when you get to the airport. And he said, It’s in reception ready for you to collect.

So he was just really, really supportive and he just went that extra mile to help, and he still does now. Just to help, anything that I’ve got any problems with even if I can’t see him in clinic.

And can you talk a bit about this extra mile’? The little things that he’s done that you feel that he’s really gone the extra mile to help.

Yes, quite a few occasions really. When I was having a really bad stage with Crohn’s and arthritis. Well, it wasn’t, I didn’t know it was Crohn’s. So he used to, kept pushing, because I kept going back to him saying, Something’s not right here. So he referred me to the gastroenterologist at the children’s hospital and he kept pushing and sending them letters to say, Can we speed it up a little bit? And he kept ringing me back up in the evenings to say, How did you get on at the clinic today? Is there anything that I can do to help the process, to help in any way?

And it’s the same with medication, the repeat prescription, and he would automatically, when the allowance had run out for how many times you could have the medication, he would renew it automatically without having to go in to have a review. You know it was just a lot of different things. Being available to contact him. I used to go into his clinic and speaking to him. It was that continuity of care and two way communication, and open communication that was really helpful.

Have you made any appointments online?

I have, yes. So it’s really helpful because you can see what times are available, because sometimes when I’m on the phone and I’m saying, Can I have an appointment with the doctor? And they say, Oh, such a time and I say, Oh sorry, I can’t make that date or that time. And sometimes you can go through seven or eight dates and times and you feel like you’re being a trouble. But it’s just that you do have a busy life and you have to do your daily life regardless. So it’s great to see online and you can see the times and you can just choose which one you want to go to and which doctor you want to see as well, which is really good, and it’s fast and convenient.

And have you got appointments kind of quickly or have you had to wait? Looking online, have you noticed that your doctor is not available for a couple of weeks?

So my doctor tends to be the one that seems to be booked up. Sometimes you see that he’s not available for two weeks. If I think it’s something that can wait, I’ll wait for them two weeks because I want to see that doctor. Sometimes you do see the odd appointment in that week where his name is there, which is like gold dust really. So you tend to book it [laughs]. If it’s something that I think I need to see somebody this week, I’ll look and see which doctors I know and seen a few times and I’ll book with one of them.

What do you prefer, do you prefer booking online or do you prefer phoning?

I prefer booking online because I don’t feel that I’m troubling the team at the doctors to go through all the times that I can’t make. It’s just nice that I can see, right that’s the date that I can make. Book it, and I can put it in the diary. It’s done, which I find helpful.

Sometimes, you know, trying to get through the admin team. Sometimes that can be a challenge. And it can be frustrating when you ring up and you get quite an abrupt response, which is not something you wanted, you know, you’re there to try and get the problem that you’ve got sorted, and you’ve just got this bit of barrier straight away. Which has happened frequently. It’s happening to a lesser extent now I’ve got to admit. And that’s something like a block, and sometimes you think, Is it worth going back?’ Sometimes I think, Well I’ll just not go back. Perhaps because you just feel uneasy. So that’s one time really.

Do you think that you get treated differently because you’re really young or do you think it’s easier for older people or, or it’s just.?

I do think, I’ve had, I’ve had a comment a few times that young people are cheeky, or not got good manners. And that’s not applicable to all young people.

Was that from a receptionist?

Yeah, and I’ve heard it from receptions saying, Young people, and you know saying about arthritis, and sometimes, Well, arthritis. He looks absolutely fine.

You’ve heard that?

Yeah, I’ve heard that and just little comments when you’re sat down and you can hear over the counter and you’re thinking, you know, I have, I have got it. You know, it’s an invisible illness, like a lot of people have invisible illnesses. And it’s sometimes little comments that were perhaps were meant with no, you know, no malice, but sometimes that can stick in the head, you know in the head of the patient.

And I’ve, you know I’ve had a few comments that really stick in your mind really. And just impressions as well, you know, that they just stick. And there’s perhaps a couple of receptionists who I try to avoid because I know they’ve just got a bit of an abrupt tone really, which is, is not really good when you’re in a capacity of being a receptionist and the first person patients see when they come to a GP surgery.

Was it mainly your parents who would ring the doctors or the GP, or would you actually do any of the ringing at that point?

When I was, pardon me, under ten, I didn’t really do anything. It was when I got to eleven, twelve and started to go to high school that I started to get in touch, you know, so that I could speak to them.

At eleven, twelve?

Yeah.

That’s quite young?

Yeah, I wanted to because I’d had it for so long. You realise that you have to grow up quickly and, you know, you start to take control of your own illness. It helped me to have that control. And when I went to the doctors, I would speak to them, ask them questions and they talked back to me, which is really nice because sometimes you do see it’s always talking to parents and that young person still has a really important voice to share. So that’s what I did and that’s why I tried to help other people, you know, to learn the skills to do it and it is hard. But it did help that I had that support from the GP.

I think it’s really important that a person, especially somebody with a long term condition, has access to a GP who’s, you know, gives continuity of care, rather than seeing different people trying to repeat your story over and over again.

When I was diagnosed with arthritis at three, I had one doctor, with my local GP, who looked after me for quite a number of years and he was really good in keeping the communications going with the hospital and this was when they didn’t really do email. It was all back to fax and everything. So he was really good at keeping on top of it.

When I got to about eight or nine, he retired and we were just assigned to a, another GP in the practice who didn’t really know me. And with that arthritis, when I got an infection he used to put me on antibiotics straight away. And that’s something I knew and my parents knew, and my GP used to know, and he used to prescribe them to me. With the new GP, she said, Oh no, let’s leave it a little while.

And what would happen is, I’d have a tonsillitis flare and then it would go to all the joints, and then I’d have to go to hospital to have joints drained. So that just added to that complexity.

A few years going down the line, we got another GP which I still have now, and I think he’s looked after me for about eight years now. And it’s really lovely because when I was really bad, you know, he said, You can contact me out of hours. Just gave that little bit extra support. And kept up to date, chasing me up by ringing me up with blood results. Chasing appointments at the hospital and keeping the referrals going. So he was really helpful and it felt like there was two-way communication.

I used to like going to see that doctor [who knew about arthritis] because I felt more comfortable talking to him and he knew, if I was trying to explain something, that he knew, you know, my history and how it fit into me. Whereas with new doctors, sometimes you said something and perhaps they didn’t quite get it or understand the implications for you. But I think they’re probably more frustrating for my parents at the time. They sort of dealt with them a little bit more than I did.

And then you heard about the reputation of the doctor. Your parents heard about the reputation of the doctor and asked to be under that doctor so that you could see that doctor every time. Is that right, or.?

More or less. You know, you try and get to see that doctor but it’s not always possible. But what we wanted was for him to be our registered GP. So he would receive all the letters and would chase anything up if it came through to the GPs and the hospital. So that was important to know that, you know, you are being looked at by one doctor, even though you might not see them every time. If you need to see them urgently, you know, it’s a booking system and you book in with an available GP.

And you mentioned he had a good reputation. Your parents thought he had a good reputation. Did they talk to you about this at all or it was people, other people who’d seen him, when they mentioned it to your parents and they thought, ah?

I think it was a bit of both really. You know, even as a young child I knew, heard that this doctor, I had seen him a couple of times when I was at the GP and he was really nice and seemed to know a lot about juvenile arthritis which, at the time, not many people seemed to do because when you used to say, Oh, juvenile? He knew about it. You know, he’d done his reading. He’d done his extra training. He kept up to date with the medications.

So it was really nice when I went, and I was on the injections, some doctors had never heard of it because it was coming up for retirement age. But he knew about all the medications and what he couldn’t do with being on that medication. And it was, you know, it was down to him, like he said to me, I couldn’t have live vaccines and raw egg materials as well. Which I hadn’t been told beforehand. So he really knew his stuff and that gave me a little more confidence in you could go to him at any time really to see him, or you could drop him a letter and it would get to him and he would get back to me.

Right. You dropped him letters, did you?

Yes, my mum did that. And then, you know, I sort of started taking over a bit when I became a teenager. You know he said, If you can’t see me in clinic, you know, you can write a letter. Leave it in reception and I’ll ring you back. And he used to do that after hours as well. So it was really, it just added a little bit more personalised care really, that. You knew somebody was looking after you and they really knew you, really.

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?’

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.

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.

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.

Are there situations where you would go to a pharmacist first at all rather than a doctor?

I guess if, you know, if you’ve got like a runny nose or a cold, then it doesn’t make sense to go to the GP because, you know, if it’s a virus, there’s nothing they can do. Whereas, you know, the pharmacy you have got different types of medications over the counter.

So I have gone to the pharmacist if I’ve got a bit of a sore throat and I just want to nip it in the bud really. But in terms of going to them with my long term condition, I haven’t really. Just because I feel more confident in a GP being able to help me or going to the specialist to help me really.