Arthritis (young people)

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.

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.

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.

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.

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.