I had my first bone density test done I think when I was about fifty seven. I’d come I’d decided to come off my HRT and my GP suggested I have the bone density test which I did. And when the result came in she said that I was below normal, my bones were just a bit below normal just a bit below normal but she didn’t give me the impression that it was anything to worry about. So I really sort of forgot about it. And it was only about three years ago when my mother, aged eighty three, suddenly got osteoporosis and her posture changed radically.

And she was in a great deal of pain and her GP who was also from the same practice as the GP that had given me my first bone density but was a different doctor, said I should have a that she had osteoporosis and that he put her on some pills and that would help and anyway, she died about six months later of something completely unrelated. And then my GP said that I ought to have I ought to have a bone density test again to see whether I had it because he said it was hereditary.

So I had that test done, I think it would have been July O in July 05. And again I was a bit lax about going and getting the result and it wasn’t until September that I found out that I actually had osteoporosis which was quite a shock, actually, I was quite upset. I remember being quite upset about it. And I hadn’t really put two and two together with the previous bone density. That sort of dawned on me later that actually I should have been given some preventative advice at least like, Come back in a year. Have another one. Let’s keep an eye on it Something like that but anyway.

If you take me through to the first when you had your first bone density scan, were you given calcium?

No, I wasn’t given anything at that point. I was just told that it was a bit below average and that’s all I can remember. I wasn’t given any pills or any calcium or any particular advice. I wasn’t even told maybe I should come back and have another test in a year’s time so.

But my doctor said, I think you’d better have a bone density test because your mother had osteoporosis and it does run in families And he sent me off for that and that’s when they found it was osteoporosis. So it had obviously gone got quite a lot worse in whatever it was, two or three years, three years probably.

I joined the group, which had only been formed not quite a year. And after discussions we decided between us that we would approach [city] Health Authority, as it was then, with a view to us setting up an appeal to purchase a bone density scanner for the hospital. And we were told by somebody in authority, As there was no cure, what is the point?" And, Thank you very much, no thank you Anyway the [name] Hospital, which was a private hospital in [city] contacted me. They’d heard about this and they would then buy a bone density scanner. So my advice to them was, Contact the consultants, contact GPs and get their feedback. And if they said, Go for it’ then go for it Which they did. And we got the bone density scanner at the [name] and I had my first bone density scan in 1998.

And you were diagnosed in?

And I was diagnosed then, I got to know my T-score and everything, which was four years after the original diagnosis.

No, I didn’t have to pay for that one. But my subsequent scans that I’ve had, I’ve had three, four, I’ve lost count, I have had to pay for. Because it’s only at the moment that the PCT is beginning to come round to that there is a problem called osteoporosis. The consultants in [city] now have been working a new scheme where the patients who go in with fractures are, the elderly patients, are then handed over to the Elderly Care consultants and they follow up the treatment, they put the treatment in line for osteoporosis. And that’s only been going six months.

Then I think I had to wait a fortnight it that that’s just it. Altogether it takes about two twenty minutes and then I waited about a fortnight to get the results at the doctor. The next time when I had to have the scan I waited nearly a year for it and I’m sure I only got it because I’d I the doctor had sent a letter to the hospital and I used to phone the hospital up and say, Has my appointment you know, am I near the top of the list?’ But first of all it was in the pending tray, not even on the list, So how long is it in the pending tray?’ Well until you reach the top of the pending tray then you get you go on the bottom of the list. Which I thought was awful.

But then as I was getting ready for work one day on the news it said that the that the minister of health had announced that the waiting lists had all gone down and nobody should wait more than three months. And I thought, Well I’ve waited nearly a year. So that night I wrote to the minister of health with all these details and said, You know, if I’m if I sort of been lost in the loop somewhere. And I got a letter back saying it was being looked into. Well I ended up getting a letter from the minister of health, the local health authority, the local hospital everybody wrote and apologised and my appointment came through immediately. So I then got an appointment but I had waited altogether by this I’d waited a year for it.

And then the next appointment when I went when I had the next scan in December 2004, it came through in about a fortnight so and but the hospital had changed. Where before I’d gone to the local hospital in [borough] I had to go to the hospital in [town] which was no trouble, we’d went by car. And it was a new machine, a brand, spanking new machine, yeah, but the same the same procedure but just a new sort of more modern machine.

And how many bone density scans have you had?

I have got a few. Every three years since 1990, since 1990 I think or 19yeah.

What are they revealing sort of in term of your

They have gone down. Each, each three years when they do the density’s gone completely down. Very bad.

And last I had only last year. One, the last one I had last year and I think since then my doctor has put me on Protelos. The medicine that I’m taking for my bones.

How does the doctor explain to you your density scan results?

He just said that it hasn’t like, I’m on HRT all the time but it hasn’t work a lot. That’s why he put me on the Protelos, that’s what he said. That’s why he put me on the Protelos now. But the radiographer in the hospital, she said that actually they should take my, every two years or even a year, so that they can keep an eye. If it is not, they, they can do something about it. But I don’t know what they can do something about it. But radiographer told me that they must, put me through the consultant, so that they, they can do something about it quicker. So, but I cannot understand, I cannot make my doctor understand.

No, he has only told me that it has gone down. I don’t’ understand exactly what this bone, it only says the figure says that it is more deteriorating rather than steady.

And do you think they are going to change how often they do the bone scan?

I don’t know, I haven’t, I never had chance to talk with my doctor. I will ask him again, that is he going to do it earlier or not. Because in between, a little while they, nobody did anythingabout my bone scan. There was gap of long period. Hmm.

How long?

Maybe more than five years, because I had in 92, that started, then they had once, so far I have only three times.

Since 92?

Yeah. Three or maybe four times. This time it was fourth time. So there was a big gap in between. But now I’m going to, I think I will have to insist my doctor as well.

I have like a bone density scan about every six months, you know the DXA scan, I have that every six months, and from when it was measured before I broke my hip it’s gone up by like you know something, I think they gave us 17%, you know my bone strength, which doesn’t seem that much I know but obviously you know it’s a difference, and I think that is a combination of you know the drugs, the Alendronic acid and the calcium. You know so, you know so hopefully that will continue to go up you know, whilst it can but I don’t know if it’ll get much higher than that. But as long as you can reduce the risk of fractures cos obviously I mean I was when I broke my leg, I had to be on, I mean I couldn’t get up I was on total bed rest for eight weeks. So, I mean I couldn’t have that keep on happening. You know it’d be ridiculous. I mean it when I was, when I was at Uni, so it took eight weeks out of my Uni you know course. Which meant that everything was pushed back, you know so I can’t be having that.

My Doctor [Gps name] sends me for DXA scans and you know I’m able to talk with doctors there you know and they send reports back to Doctor [Gps name] and to Mr. [consultant]. You know so there’s no-one specifically but, you know I kind of trust Doctor [Gps name], he’s really good. Really really good, and so I haven’t seen anyone specifically for a while.

So I went and had this DXA scan and was seen by a consultant who informed me that my bone density particularly in my spine was really quite bad for my age. One of my vertebra had a T-score of minus 4.5 I think it was which at the age of 58 was really quite, by now I think I was 59, this was really quite severe. And his words to me were, If we don’t get you treated by the age of 70 you will be in a wheelchair because your bones are already those of a woman in her mid seventies to eighty

He straightaway said that I needed a new drug, a comparatively new drug, called Fosimax and Alendronate and he thought this was the best treatment for me.

I took this drug for eighteen months before I was sent, I was recalled for a further scan and unfortunately the results were not good. Not only had I not failed to lose any more bone, I had actually lost more and the consultant was very concerned and immediately put me on to a calcium and vitamin D and HRT.

All together I have had six DXA scans and once the HRT and the new treatment, the combined treatment began to take effect my bone density showed a tremendously encouraging improvement. I was kept on the HRT for I think altogether six or eight years. I had no adverse effects from it. I found that it improved my life quality in many ways. I had a lot of energy and I really felt very well on it, but at the end of that time because of various scares about breast cancer and so on my GP said he thought I had been on it long enough.

Since then I have kept on the Fosamax and the Calichew D3 Forte. There has been a slight falling off in my bone density but it’s not significant. Overall the density of my spine has gone up some 22% and as I have got older of course my bones would have got more porous anyway, so in fact I am now osteopenic for my age. I don’t actually have osteoporosis as such and I consider myself extremely fortunate that without this treatment I would not have been able to lead the active life that I have done.

I think it was in 1989, somewhere around there, the [hospital] was doing a survey on osteoporosis. And I was one of the people who went up and had some tests. And the result was that I wasn’t osteoporotic. I was well into the proper area. And so I really forgot all about it.

I then had a period in my life where I didn’t do a great deal except work. Worked twelve hours a day but didn’t do a great deal of activity. And obviously being a physio I was aware of the fact I should do activity. And so I went for another test. And I was still all right.

And then it wasn’t until last November when there was some research going on at the [name] centre, that they did blood pressure and height and so on. I’d lost an inch and I was down on the scale of bone density.

So I went to my GP, who sent me off for a test at the [hospital] And while I was there I had a look at the results [laughs]. And it was quite horrendous really. The bone density in my lumbar spine was not very good at all. And so then I was put on alendronic acid and Adcal, two tablets a day. And I’ve been taking it ever since.

I didn’t see a doctor. I just saw the radiographer. And she and I looked at it. And she explained to a colleague that the bone density was not very good. And obviously she couldn’t explain to me that sort of thing because it had to come from my GP. So she was explaining all this to a colleague.

And I think I was quite shaken because I didn’t think I would end up with osteoporosis really.

I’ve had I think one or two. Now that’s a big issue in this area. I have been in contact with the MP, [name], in the past. Apparently at one point when I was being, being seen privately by the consultant, I should have been having one every two years. I’m now on the National Heath system and I haven’t been having one every two years. In fact they don’t think it’s necessary, as I understand. But apparently, they do have a bone density scanner and I’ve been to it once, and it’s in [city], which is quite a distance away, and apparently they only use it one morning a week. So in the whole big area that it covers, they can only scan eight people that one morning a week. I’m appalled. it’s all right if you can afford to do your own. But when you can’t, the provision isn’t there really. I waited a long time, have had a bone density scan, did wait for my turn. But I haven’t heard of anything since. And perhaps I ought to chase it up. I haven’t. I’ve had other things to deal with, like my ankle. But I did, as I say, get in touch with [MP]. He did take it on board but wanted more information. However, as you’re probably aware, [MP] had his own problems, it had national coverage, and it sort of went by the wayside. And also I lost impetus because I had this accident and I had to focus on me and getting myself better.

Getting back to the wife she went to the doctor and asked him about going on HRT and could she have a scan as well because her mother had osteoporosis and, you know, blah blah blah. He said he’d find out. Anyway he rang up three weeks later and he said, Very sorry, [wife] you cannot have a scan because you’re not old enough. She’s fifty five means in apparently you’ve got to he sixty now before you have a scan unless you break a bone. So if she decides to fall down and break her neck or break a bone they’d have her in tomorrow to give her a scan. But because she hasn’t, then no she can’t, not until she’s sixty I suppose. it’s just their way of saving money isn’t it?

Yeah she’s concerned that she’ll get is as well, you see. I think they’re all me family are concerned yeah they’re they might end up with it, yeah. They are getting to that stage, yeah.

Well yeah, they have and then they get told, I mean me daughter especially and they say, You’re too young. You know. I mean surely if I’ve got it, my mother had it, mother-in-law had it surely that they would check the wife see if she’s got it even though she’s only fifty five and perhaps check the daughter as well, perhaps check me sons. If, it’s so hereditary you know, I mean [sighs] I don’t know.

I’ve had quite a few. The initial one was at [hospital] then it turned it transpired that the machine they use at [hospital] as far as the results were concerned, wasn’t compatible with the machine they use at [hospital] and [hospital] so there was nothing to compare.

So the comparison didn’t really begin properly until I had scans at [hospital].But now I have regular ones at [hospital] and I can keep a proper record, you know, I keep it in my diary, the results of each DXA scan.

Because when I said initially there was a three year waiting list. The waiting list now is non-existent because the [city] and District Support Group with fund raising events paid for the DXA scan that’s currently in use at [hospital]. And the computer which prints out the results in a format that GPs can understand so you know, but yes as a nurse, yes I have a personal interest.

What do you mean in a form the GP can understand?

Well, when the results were available initially. The GPs didn’t realise that the plus or minus of the As, the Zs the T scores and the Z scores they couldn’t interpret it and the patient was told, Yes, you have osteoporosis Or, No, you don’t have osteoporosis With no idea of the levels, you know, the spine and the hips. No idea whatsoever of how severe this osteoporosis had become. Well, now there is absolutely no excuse for Gps not knowing how to interpret the results, you know. There’s no excuse now because, as I said, we bought the computer for these results to be made available.

Locally I think possibly our biggest contribution has been helping, we didn’t spearhead the campaign but we did a lot of work and we raised money to get our own DXA scanner at the local hospital which has cut out this long journey for patients having to go over into England for a DXA scan. We have one member who actually had a spinal fracture in the ambulance being taken all that way to be scanned. So those days are over.

Locally we are very, very fortunate to have a lady consultant who is passionate about osteoporosis and we’ve formed, as a result I have to say, of help from our MP who is our Patron, after we got our DXA scanner we discovered that it was not being very frequently used and our MP called a meeting in the hospital and we were appalled to find that of the consultants who attended it from other specialties, some didn’t even know that there was this machine in their hospital to which they could refer patients from perhaps geriatrics or another specialty and so as a result of this, people from each of these related specialties formed an osteoporosis working group on which our group secretary and I served and we met twice a month in order that right across the hospital and within the group information was being shared about osteoporosis treatments and we could hear how the DXA scanner was being used, how many people were being referred.

What did the DXA scan say. Increased risk of fracture. No previous scans available for comparison. Results will be elevated simply due to Strontium but to what extent is impossible. Results for the spine scan are compromised because degenerative changes have falsely elevated the BMD (bone mass density) results. The value for the hip may produce a more accurate picture. And it just said that the hip was showing that I was at risk there. I can’t remember that was here.

Treatment recommendations were the calcium and vitamin and it talked about bisphosphonates or Strontium and someone like me has already had a low trauma fracture, a fall from standing height or less. And that they, because I’m post-menopausal no further drastic bone loss expected unless there is a clinical change.

Did these results, did you talk to your doctor about them?

Yes.

Ok what did he or she say?

She said yes you must make sure you continue taking all your medication and because you definitely do not want to break a hip. And I agreed with her, no I do not want to break a hip. So the reason I do take them, the hip score is lower. And so yes I, I’d like to think that I’m doing now all that I possibly can in order to help myself.

Now did you have another scan after you finished the treatment?

Yes, yes I did. But after that they did tell me that I, to, they don’t advise the deep bone scan now. But they say they can tell from the blood, taking blood now. So they, the deep bone scan isn’t so necessary any more. So every year I go to my GP and have s-, blood taken once a year. And it takes a couple of weeks or so before the results come back. But I go and see her every so often. And she, she did say that the osteoporosis was out of the spine, you know. So that was excellent, you know, as far as I was concerned. I feel very fortunate, you know, to have um done what I’ve done so far.

Who gave you this information?

Yes, that was up at the hospital. Yes, because I did suggest, you know, saying, Well, can I have a deep bone scan But then I was told, Well, the blood will tell us as much as having a deep bone sca.