Gloria - Interview 06
Age at interview: 66
Age at diagnosis: 58
Brief Outline: In 1999 and following a wrist fracture, the doctor at the hospital advice her to ask her GP for a bone density scan to test for osteoporosis. No maternal history of osteoporosis, but surgery to both her kidneys. On alendronic acid once a week and on Adcal D3 once daily.
Background: Married; worked as a shop manager but retired last year. She wrote to the Health Minister explaining that she had been waiting almost a year to have a DXA scan.
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In 1999 following a wrist fracture, the doctor at the hospital advised her to ask her GP for a bone density scan to test for osteoporosis. Gloria has no maternal history of osteoporosis, but in the past she had surgery to both her kidneys. Her current medication is alendronic acid taken once a week and calcium, vitamin D, Adcal D3 once daily. She hasn’t experience any side effects from her medication.
Gloria asked her GP for a DXA scan but was convinced that it was all a ‘waste of time’ because she didn’t believe she had osteoporosis. Her diagnosis came as a shock and didn’t have much information about the condition. Gloria has made the point to inform herself about her condition and its treatments.
Gloria feels lucky because her condition does not really affect her life style. She has no problem carrying her shopping or lifting and is able to walk long distances. At weekends she and her husband usually go for an outing that involves a good long walk. Nonetheless, Gloria is aware of the need to avoid unnecessary risks that might result in her having a fracture. Gloria said that the only thing that has changed is that now she is more aware of the importance to include more calcium rich food on her diet. For many years she had an almost dairy-free diet because of her kidney stones problem.
Gloria waited around three months to have her first DXA scan and thinks that it is a reasonable waiting time. But for her second scan she had to wait nearly a year. She used to phone the hospital to find out how her application for a scan was proceeding. One day she listened to the Minister of Health saying that no one should wait more than three months to have a test done. Gloria wrote a letter to the Minister explaining her situation and got a reply back saying they were looking into her case. She got letters from the Minister of Health, the local health authorities and the hospital all apologising and got her appointment for her scan within a week. Gloria said that waiting time for a DXA scan had been reduced in her local hospital and so for her third DXA scan she had to wait only a couple of weeks.
After waiting for a year to have a second bone density scan Gloria wrote to the Minister of...
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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.
Gloria gave up drinking alcohol and smoking thirty years ago when she became ill with kidney...
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No, I haven’t drunk alcohol for thirty I think it’s probably about thirty four years.
Why was that?
Well because I had kidney stones and when I was first diagnosed with kidney stones the consultant said not to drink alcohol, so I just stopped drinking it. I mean I only drank it socially anyway but he said don’t drink it so I just stopped. And I haven’t drunk since.
What about smoking?
I gave up smoking also thirty odd years ago after my second operation. I had an operation on one kidney to have the kidney stones removed and I couldn’t smoke in hospital but I had this awful cough and the physiotherapist used to come do physiotherapy on me and she said, ‘It’s the smoking.’ I thought, ‘I won’t smoke.’ But as soon as I came out of hospital I started smoking again. Really regretted it and then less than a year later I had to have an operation on my other kidney for kidney stones and I was, by this time I was feeling so ill I thought if I stop smoking before I go into hospital it might help. So I just gave up smoking then and I’ve never smoked since.
And how long ago was this?
It must have been probably about thirty four years ago.
Okay. So were you a heavy smoker?
I smoked twenty a day at least, yeah.
As well as newspaper articles and booklets from the NOS, Gloria always reads the quarterly...
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I do get books from, you know, booklets that come from the National Osteoporosis society and my husband is very good. If you reads any article in the newspaper about new research or like there is research and I think they are testing an injection, you know, he writes on the on the front of the newspaper page such and such, things for me to read [laughs] about osteoporosis and I sometimes cut them out to remind me that I should do something about them, like ask the doctor. But then I never get round to asking the doctor about it because I think, ‘Oh well I’m all right.’
As to do I get enough information like I’ve read I’ve read the booklets and is it once a quarter you get a magazine from the National Osteoporosis Society so I always read that to keep me up to date with how things are going. Yes.
How do you find the information? How do you find the magazine?
The information as regards the osteoporosis yeah, I find that very helpful and I always read the letters, you know, what other people are going through and think myself very, very lucky. Lots of ladies, you know, they’ve obviously got it so bad that their clothes don’t hang right. You know, lots of them write about they must have this, what’s it, widow’s hump or something because their dresses don’t hang right and then someone will write in and say, ‘You know, this is a solution.’ And I always feel so sorry for these people. I think, ‘Oh it must be awful to have it that bad and how lucky I am that I haven’t got it as bad as that.’ You know, it just hasn’t affected my life.
And all the medical things in the magazine I always read those and find they’re very helpful.
Gloria decided not to see a consultant privately because she felt osteoporosis didnt really...
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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.
When telling a patient their diagnosis, spend more time giving them explanation and information.
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I think when they’re when it’s first thought that someone might have osteoporosis a little bit of time should be given to the patient. Do you know what osteoporosis is? You know, for us to have diagnose it this is what we would do. I think that would be a good idea. And then once it’s been diagnosed that you have osteoporosis, perhaps my doctor is a bad example, but I just think a little bit more detail not just, ‘Here’s a leaflet. Read that.’ Perhaps.
Some more information.
Yeah, Yes, I mean he gave me this leaflet and said, ‘There’s a bit there’s a bit of information and you can get in touch with the National Osteoporosis Society.’ I mean he never even had the telephone number. I had to find that for myself and I suppose like any illness that’s going to affect your life in some way, just to have a little bit of information to, to perhaps relate to the patient not just give them a leaflet.
Gloria stopped taking dairy products after she had surgery to removed stones from her kidneys....
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Have you made any changes to your diet since diagnosis?
Yeah. Yeah, this I thought may have been a contributing factor. Years ago I had kidney stones and I had an operation on both my kidneys with the kidney stones big operation, it was before keyhole surgery. And at that time the hospital or the consultant decided that the contributing factor to my kidney stones was dairy products like milk and cheese and. So to cut down on milk, not drink milk. Could have it in cereal, as a cereal or in a drink but not drink milk and try not to eat an awful lot of cheese and also strawberries and rhubarb. But so I hadn’t had a lot of dairy, I never drank milk and this was from I was in my early thirties and I didn’t have much cheese.
Well then when I was diagnosed with osteoporosis you need the calcium and I do remember asking the doctor, you know, I said, ‘Well for years I hadn’t had dairy products in a great quantity and now I can have, you know, I’ve I should have it because of my osteoporosis.’ And he sort of said, ‘Well kidney stones are easier to deal with.’
It’s easier to deal with a kidney stone now than it is the osteoporosis.’ So yes I still don’t drink milk because I don’t like it but I do tend to have more on my cereal and I have cheese and yoghurt, and I never liked yoghurt but I have yoghurts. I eat lots of fruit and fresh vegetables and I’m very aware of trying to have a healthy diet. Yes and I’ve got like the healthy eating booklet from the national society. The osteoporosis society. Yes. I mean there’s some things that I just don’t like but I do try to eat more healthily and if I haven’t had my fruit or, you know, sort of something that’s healthy I you know, I do think, ‘I should I should really eat more.’
Gloria thinks that most employers arent aware of how serious osteoporosis can be and do very...
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I don’t think people realise how serious osteoporosis is. You know, that because it contributes to killing people one of my volunteers had osteoporosis, a lovely, lovely lady and she was quite bent over and in the end she couldn’t breathe because she was so bent over her lungs weren’t working properly. And it really contributed very much so to her dying. And I just don’t think people realise how serious it is. It’s not just that your bones are thinning and deteriorating and you can end up with like a pain in your back or you can break something.
But it can cause other problems and I don’t think people are really aware.
So do you think that this affect the kind of support that someone with osteoporosis can get because of this lack of understanding.
I do. Yes, I think, you know, particularly in the work place you know, health and safety is a big factor in the work place wherever you work now but if you’re employed by a company and you’ve got osteoporosis even if you tell them you’ve got osteoporosis, so you’ve got osteoporosis they make a note on your records but I don’t think they’d do anything to help you.