Involving me in decisions about my care

– Health professionals help me to take care of my own health.
– When choosing a treatment, health professionals listen to what is most important to me.
– I can refuse a treatment.

Being involved in your care helps you learn to trust yourself, gives you control and an…

Gender Female

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Mandy’ That they’ll [professionals] take the time to stop and go, Well, this might help. But you know I want you to try it not, This will help, go away and do this type thing. Cos I found that even with the good ones to begin with. He gave me this thing of, he wrote it up, a sort of a care plan of what I’d do if I felt really, really bad, and I didn’t even, I didn’t do any of it really, I was you know, I’m not doing what you tell me to. You know I’ve only just met you, I walk in and you give me this. You’re having a laugh But then you, he re-did it, and he re-did it with me, and he involved me in the process of it, and like I was a lot more open to actually using it then, which I found was helpful. So being involved I think helped. And you know since I’ve been a lot more involved in my care I’ve come a lot further.

Sian’ Definitely. I think if they involve you in the meetings rather than talk behind your back, you feel. I mean, they haven’t been, they have like big case meetings and things about you and it’s all done behind your back and it’s all hush, hush. And you’re not allowed to know anything about it basically. That, that’s not good but when they do start thinking well, yeah, let her come in, let her sit down, have her opinion, and, but that’s what helps really, letting you, letting you have own opinion.

Mandy’ And it helps you learn to trust yourself again. That you can make decisions, that you’ve got some control. Which is what a lot of people with the depression and sort of the similar illnesses feel they don’t have, they feel they’ve lost that.

Sian’ Control, yeah.

Mandy’ It makes you sort of, if you’re involved in trying to fix your life really, cos that’s what it is, then you’ve got the opportunity to build a better one, you’ve got the opportunity to actually wanna live.

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Her relationship with the GP is good because he listens well, is responsive and doesn’t…

Age at interview 54

Gender Female

Age at diagnosis 50

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And is there anything that looking back you feel worked particularly well for you?
My GP letting me take control of it or not control of it’ I mean he was’ I mean I said to him in January, ‘I want one last try to get these under control. And he said, ‘Okay, but you’ve said that before. And I said, ‘No, I really mean it this time. I will, and then if I don’t get it under control, I will start insulin. And you can put that on my card, that I will do that. And he let me do that, you know, without, and he hasn’t sort of, he hasn’t pressured me into stuff that I didn’t want to do. It’s been negotiated. The increase of medication has been negotiated.

The, I mean I said to him about the atenolol, coming off the atenolol when my blood pressure went down. And he said, ‘Oh, I don’t know. Oh, all right then, well give it a try. So he responds to my requests. And if my bloods continue to stay the same, I shall ask if I can take lower doses of the metformin. And I’m sure hell let me if he thinks that’s okay, as long as I monitor it.

So theres a lot of, I think for me I’m glad theres a lot of self-monitoring. And you have to take responsibility for it yourself because it is a lifelong condition – it’s a 24-hour condition. You can’t just take your medicines in the morning and expect to go through the whole day then just doing what you like.

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Marine thought her GP was really good because she warned her that there would be lots of choices…

Age at interview 37

Gender Female

Age at diagnosis 33

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She was really good, because we came after the year after the ectopic and said, Okay we’ve tried ra ra ra And she said, That’s fine. I’m going to refer you. This is what’s going to happen. You need a sperm test. You go to see the infertility nurses And then she said, Remember this could be a long process and there’s a lot of choices coming up that you need to make and remember that at any point you can say no So she was really good actually, yes, she was brilliant. Hm. Hm.

So she kind of warned you about the sort of choices?

Yes, yes, she didn’t go through exactly what it was, but she just said, Remember it’s easy to be just swiped into it. You don’t, you can stop at any point So yes, she’s great, yes, yes.

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