How is your GP, how is your relationship with her?

Marvellous.

Yes?

She’s absolutely marvellous. The only thing is you can’t get an appointment very often.

How long have you been with her?

Well I’ve been with the surgery longer than she’s been there. Oh thirty years. I would say. And all the doctors there are marvelous you know. If you can’t go to see your normal doctor, there is always an appointment free for another doctor. And they’re all very good. They look after me. They really do. If I’ve got any qualms at all I just have to go there and they sort me out. You know,

Oh definitely, yes, every time I see the consultant he writes to my GP. And my GP has written to Professor [name] at [name] Hospital about changing my drug, so I’m just waiting to get an urgent appointment to see what they’re going to put me on. But I was told a couple of weeks ago when I had the infusion that I would be put on a new drug once I’ve had my annual consultation. So they are just pulling it forward for me.

So when is this annual consultation?

Well it was, it’s coming up in June, but I think they are going to try and get me in sooner in view of the letter my doctor wrote, because she feels I shouldn’t have had this happen. I should have been on a drug that would prevent this happening. But whether that’s the case or not, but that is what she wrote anyway. Well that is what she told me she was going to write.

So everything was quite fast kind of the whole thing?

Oh yes, my doctor doesn’t let the grass grow under her feet. She’s marvellous. [laugh]

So it was sort of, she referred you straight away?

Straight away yes.

Straight to the hospital?

And she’ll also said if you haven’t heard within a fortnight let me know. She’s really good. Well, the whole surgery’s the same.

How do you rate your experiences with the health services, about how your osteoporosis is being managed?

Well I think it’s excellent. I think it was excellent the fact that as soon as I broke my wrist, well it was virtually within four weeks, my doctor actually contacted me. And asked me to go to the surgery. Whereas I don’t think that happens very often. Maybe it does in some areas. So I thought thatI thought she was brilliant. And then when I went the fact that she suggested I have this medication in case I had osteoporosis because we didn’t want to loose those months. And then she’d arranged for this DXA scan. I thought she was excellent. Yeah brilliant. I’m very lucky.

Yeah she’s excellent. She really is absolutely, 100%. Hm.

So you, you have trust in her?

Yes she’s really on the ball. And she’s proactive rather than reactive. Yeah she’s very good.

For how long have you had her?

Well funny enough, she’s one of a group. And obviously when you make an appointment you tend to see anyone of the group. But I happened to see her when I had the fracture. So it was fate really [laughs]. I mean the others maybe as good. I don’t know because I’ve only been involved with her. But yeah she’s excellent and I’m very lucky.

ItI mean we’re, we’re considering moving and it, it sort of makes youthose are things that you have to consider when you make a move. If you change your doctor, if you have doctor that you totally trust, are you going to find another one that you totally trust? Yeah she’s excellent.

Well, from my own experience, and I can only speak for myself, first of all to be told that nothing can be done was not good enough. It really was just not good enough. And I was lucky in the sense that I could pay to go and see a consultant to clarify and get a second opinion. Perhaps I could have got a second opinion on the NHS, but they seemed to be totally inundated, didn’t seem to be coping that well. And also we need a far greater explanation about what the side effects are with regard to the drugs, what we should expect in the future. And just being even given relevant websites to look up to get a greater understanding of what the disease means and the effects on one’s life.

So those are your needs in terms of information and advice?

Yes, well, I think I was, I was very unfortunate in that I got told that nothing could be done because I was of a certain age. That’s unbelievable.

How old were you?

I was 45.

Okay.

Unbelievable, isn’t it? I mean that’s totally ignorant. I mean I don’t know where she trained or whether she was having a bad day or what.

Well, I think I’d like, I’d have liked a lot more information about first of all whether my ankle was osteop-, affected by osteoporosis and what other parts of my body are affected. I also found out, I went one day to the doctor, and I’ve realised my fingers, just these two fingers, there’s, there’s some sort of bending and there’s a sort of lump on them on, on both sides, just beginning. And I went to the doctor’s and they said, Oh, that’s osteoarthritis. That’s an element of your whole condition Why didn’t they tell me that this is going to happen? I mean why wasn’t I informed of the, what other things I could get as a result of the osteoporosis? Totally uninformed about so much. And maybe I have, should have been more proactive, but no one told me anything about what other things could happen to me as a result of this osteoporosis. I knew about fractures, but I didn’t know about anything else.

How did you feel about that?

I was pissed off, to put it bluntly. I was fed up about it. And it was a sort of a, By the wa thing, you know. There was no sort of care really, I don’t think. You know, there was nothing. Just, Oh, that’s by, by, you know, side effect. Goodby.

No I didn’t really see the point because it doesn’t affect me. You know, so I don’t I don’t really see the point. If it affected me. Then yes I would I would like to see a consultant to see what can be done about it. But as I seem to be going along all right you know, just I and I and I sort of feel guilty you know, why should I see a consultant when there’s someone, you know, I’m fine so I don’t need to see the consultant where there might be somebody that desperately needs to see the consultant so I shouldn’t take up their time.

Okay. So you have such feelings?

Well, it I think it’s because you get this impression that the National Health Service really struggles. And I I’d hate to waste a consultant’s time telling me, Yeah, you’re doing really well. When he could be seeing somebody else that either needs to be told that or, you know, isn’t doing so well or, you know, needs his time more than me.

I can’t understand why I’m not taking vitamin D in with the calcium and the alendronic acid.I would very much like to know the physics or the chemistry of what happens with alendronic acid when you take it. And why you have to take the calcium.That I haven’t really found out from anywhere.

And if I could find somebody who could tell I’d be really grateful.And the other thing is, I wondered whether there wasa specialist who specialises is osteoporosis so that one could go and just have one chat to ask all these questions.

At the hospital?

Yes.Hmm.

So you would like to see a specialist?

I would, I think.I would like to have one private appointment with him so he wouldn’t be hurried, he could tell, answer all my questions and tell me more as well.Not just the good side, the down side and everything about it.So then I’m prepared for whatever might happen.Because I’ve had patients whove had osteoporosis, you know, a lot of them.And as they get into 80s and their vertebrae concertina, they’re in agony.Now whether the alendronic acid prevents this or whether that is what is ahead, I’d really like to know.

My doctor said he didn’t even know anything about it. Bearing in mind we are talking something like fourteen years ago when the knowledge of osteoporosis in general practice was nothing like what it is now.

My own GP, who has now retired, had a tremendous change in attitude, he called me, his pioneer, because I almost pushed him into taking notice of osteoporosis and he became very enthusiastic about sending people for DXA’s. I don’t take the full credit for that. I think this was a trend that was happening anyway, but it was encouraging to see how much more seriously he took it and how he was prepared to look at new treatments. It may have helped that his own mother in law was diagnosed with it. And so consequently his wife may inherit this tendency, but I have seen a big, big improvement.

And so even to the level where I’d been diagnosed with the osteoporosis, you even still have to sit in Gps surgeries when it involved my dad and my mum having to, you know, put me in a car and drag me there and look after a baby at the same time. And being told when I’m linking the symptoms together to doctors, that I’m told, that’s it, you, that’s enough, no more now today, and just told to go away. When I’m linking together the fact that you’ve given me Calcichew and my pooh is now white, which means, and I’m covered in, because you’re also, with coeliac you get, you can get a dermatitis herpetiformis and I was covered in them. And so there was no, nothing creative went on at all.

And in my head, because I am creative, I knew that all these things were connected. But then I think I realised that I was just not important, that you’re just this person whos sitting there going, you know, maw, maw, maw, maw, these are my symptoms. And I suppose GPs and doctors hear it all the time. But what it’s left me with is being I don’t trust them and I can’t communicate with them any more.

Do you feel strongly about it?

Yeah, I think it’s all, it seems to be that it’s altered my life now. As I, even badly, when I meet a friend or one of my son’s friends whos a GP, I can’t talk to them. I just can’t have that relationship with them because I know how they, kind of how the brain thinks, there’s a very logical, A + B + C, whereas life really doesn’t, necessarily go that way. And so it, you know, has had a detrimental affect on my being able to ask for help from a GP surgery. Because when I did think that things got bad GPs would be there, and consultants and stuff, they’re not really. But I hope they are if like my son’s ever ill. Then I hope that they, it will, they all work fantastically. But with something like osteoporosis it’s so, so meaningless and boring and not life threatening that I think it’s, it has it’s backstage somewhere.

That’s you view?

Yeah.

That’s how you think they look at it?

it’s an old people’s disease. it’s just like, there was something on the radio, only the other day about the fact because women are living longer then they’re, they’re more at risk of their bones thinning than at risk of not taking HRT and getting breast cancer. And so it’s told, you know, it’s an old people’s disease and so it’s put on the thing that you just naturally get when you’re old. And so I’m 42 now, I was 36 then, and I knew I’d become old.

I didn’t know anything about it at all. I. He just. Because first of all the doctor said to me, I’m going to refer you because,’ he said, I think your bones are crumbling. That’s what he said. He didn’t say it was osteoporosis. He said, I think your bones are crumbling. So this is when I was referred then to this hospital.

Ok to see the consultant?

To see the consultant which I, you know, I did. And he chatted with me and then he said, he gave me an appointment to go back again to have the bone scan.

The second time I went to see him [consultant] he said to me, You’ve got osteoporosis which is deterioration of the, the bones through lack of calcium. So he said, I want to put you on this weekly tablet to try and build your bones back up again. Which obviously the bone tablet wasn’t strong enough because my, they’d gone too far. You know, they were so thin but this is how I kept getting fractures. And so then of course, after a. It must have been going on for a year I would imagine. He said. I had a letter to say he would like me in the hospital for ten days, so ten days like a pain clinic. And he said, I will try you on these various medications to see which suits you best. Which works with you, on you. But none of them did because I kept getting a fracture. I’d only have to bend down and I’d get a fracture. My bones were so thin. And then it must have been three or four months later he said, I would like to try and get this Forsteo. He did say the name.

Teriparatide [laugh].

He said, I’d like to get this funding for you for this drug if I possibly can because,’ he said, I think that is the only treatment what would possibly work with you.

So that’s when they referred me to. And that must be what, five or six years ago wasn’t it [husband]. Five or six years ago that was.

So now you are under the care of the consultant?

I’m under the care of Dr [name].

Son’ Since my mother has been under the care of the consultant we saw such a rapid change in my mother. She went from a frail, looking old lady to who she is now. I think if the doctor’s had diagnosed her earlier, the GPs I don’t think my mother would need to have suffered the pain that she had done. And if they’d sent her for the x-rays or a bone test earlier it would have saved my mother a lot of anguish.

And the family. Since she’s been under the consultant in the [name] hospital in [city] he’s just turned my mother around.

The consultant, the metabolic bone specialist I see is. He’s absolutely brilliant and we’ve sort of discussed all the avenues if you like. He’s become quite a friend as well because he… We don’t just discuss the osteoporosis but we discuss my pain and all the things that go with it. I think he understands that osteoporosis alone isn’t. You know, once you have osteoporosis it is the trigger for other things. it’s been suggested that it’s unwise. I’ve had a second opinion on the surgery that, that you know it would just be too dangerous to operate again to put this right. So at best I live on painkillers and that’s basically my future I suppose is living on morphine and that’s what it’s left me with really.

The osteoporosis is under control. I had a DXA scan a few months ago and I’m waiting for the results of it but it. Every year they’ve been showing steadily, you know, that it is under control. So the treatments for osteoporosis are working. it’s the after. it’s what the damage the osteoporosis has done is what I have to live with now.

I mean the good examples are really easy when you consider the metabolic bone specialist I see. As soon as I started seeing that person then all of a sudden the picture became clear. It was instantly identified that it was spinal osteoporosis. It was explained to me clearly. I understood the condition. I didn’t need to ask too many questions. I was, you know, I was given enough information to digest and where I could get even more information. And that was a good. You know he was a, he was brilliant. He had a brilliant way of describing things. And that was the one extreme.

And then there. You know they, then you take the other extreme where, where your own GP doesn’t really understand about osteoporosis and still calls it brittle bone disease when it’s nothing like brittle bone disease. And you know they just. And they’ve got, they’ve probably something they touched on but don’t really understand. You know and they sort of start quoting things that are sort of 20 years old. You know and talk about HRT and things that we haven’t talked about for 20 years.

And also they, you know they, the bone, the orthopaedic surgeons that I’ve met you know there’s two bad examples in the beginning where they, you know, they didn’t really talk about osteoporosis whatsoever. You know didn’t even mention osteoporosis and I find that really amazing, you know that. But I think once I was in front of the metabolic bone specialist then it did. It immediately, you know, we knew where we were going. We knew what we were doing and as a patient that makes life a lot easier. You know once it’s diagnosed and you have a diagnosis then you can identify and you can go away and learn about the illness yourself then.

As I say, the only thing I can say is it’s still staggers me that, you know, when I was diagnosed with osteoporosis that the amount of ignorance, you know, in the medical profession. it’s still there. it’s still prevalent today really that, you know, that people have this perception of osteoporosis that, you know, it, they’ve got a preconceived idea it only affects 75-year-old people. You have to be a female and you have a hump on your back. That’s osteoporosis. It doesn’t affect anybody younger than 75. It certainly doesn’t affect men. That is the conceived idea, you know, and it’s a steep learning curve. it’s going to take a long time to change people’s mind set. You know hopefully we will achieve that. But, you know, I feel as a patient it’s an uphill battle you know that the ignorance is still out there.

I was taken to see the consultant, put up on to the couch, no blanket. And in that room there was the consultant, the registrar, the houseman, the occupational therapist, the physiotherapist and the student nurses. Now this man came to examine me, had my nightie up round my neck, no curtain round the bed and no blanket. And I just looked up at him and said, Whatever happened to patient dignity And from then on, oh, he was nasty to me, he really was.

So I said to my GP, I’m sorry, but I want to change from that man So he said, That’s your choice. Who do you want to see So I named this particular consultant at another hospital. And he said, Well, you’ll have to go privately So I said, I understand that, I realise So we made an appointment. I went through to see this other doctor and, who wrote back to my, who was, to be quite honest, quite appalled at my drug regime. He changed everything. couldn’t understand why I was taking that, why I was, What are you taking that for? You shouldn’t be on that. You should be on this And to be quite honest within two months of seeing that consultant I was a different person.

What did you have to pay to go and see him?

When I saw the original rheumatologist it cost me £70. When I saw this rheumatologist it cost me £70, but there was nearly ten years’ difference. And that new consultant has made such a difference to me. I am so much better.

Yes. But after I’d seen him initially privately, he wrote to my GP. And he wrote to my GP and said, Yes, I know Pat and I’ve decided that I will see her on the NHS So I go now and see him through the NHS. But, as I say, he, everybody will tell you what a difference there is with me. There’s a lot of difference

And you get along?

We get on fine, yes. I mean he calls me by my Christian name, like my GP does. He calls me Pat.

How is your relationship with your GP?

Oh, great. I can ask him anything. I’ve got him on to the osteoporosis road. I take all my information I get from the NOS down to him. Get them on. Because, as I say, the, it’s only just in this last year that osteoporosis has come to the fore in [city]. Or is coming to the fore, let’s put it that way. We’re beginning to get somewhere. That’s not bad after fourteen years of, of fighting. We’re getting there.

You’re changing?

We, yes, we’re changing attitudes. We’re getting the G, the, the GPs round and the hospital consultants round to realising that, I’m sorry, but osteoporosis does exist. it’s not just an old ladies’ complaint I mean when you think 1 in 2 women, 1 in 5 men. And what does it cost? £1.5 billion a year in fractures.

You are working or campaigning for more preventative work?

Exactly, yes. Early diagnosis.