Sources of information for people with osteoporosis
People who wanted to find out more about osteoporosis sought information from many different sources such as support groups, the internet, books and medical journals. A few attended lectures and talks organised by the National Osteoporosis Society (NOS). Several people said that magazines and newspapers were also a good source of information. In general, people seeking information and advice tended to rely on more than one source at any one time.
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.
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.
Many people tended to use the internet following their diagnosis. Their views differed regarding the quality and quantity of information on the internet. Several people were put off by it and stopped using it. Iris said that the information she found ‘frightened’ her, in particular the side effects of medication. Valerie said that there was, ‘too much negativity’. Sarah wanted information about alendronic acid and an on-line chemist-type of site apparently gave her inaccurate information about the year it was licensed. Susan stressed that it’s always ‘safe’ to only search official websites. A few people thought that the Canadian and American websites were very informative.
Keith works full-time as a statistician and he is also a concert pianist; single. He was aware of breast cancer in men but thought that osteoporosis affected women only.
I just Googled it, and you know one thing leads to another.
What do you think about the information you found?
I found quite a lot, no I found a lot of good stuff about Osteoporosis, for example there was even one Canadian site (http'//courses.washington.edu/bonephys/FxRiskCalculator.html), where you could actually put your levels in, you know, they, the levels from the report, which I did, and they come out with risk factors and, and for example it, you know, you know, it said well based on your, your hip measurement you’ve got something like I think a 5% chance of a hip fracture within the next 10 years. It might have been less than less than that even, but it was quite low.
Do you remember the site address?
I don’t, no, it was all, it was it was last, you know, it was after I had the bone scan which I think is late last year. I can’t remember any of the URL’s no.
But it was a Canadian one?
Yeah, it was a Canadian website yes. That was you know that was quite good, but it there was an awful lot on the web about it, and all about the treatments, and yeah one of them, one of them in the, in the link to testosterone deficiency was one of the causes which was mentioned. And so I went into it, and you know and you know I found quite a lot about the effects of you know testosterone treatment. Which were basically pretty positive, you know it seemed to me, but you know the interesting thing was there was not many, there was not a lot about side effects, but when I actually got the pack of the testogel there was actually quite a lot, there was a long list of possible side effects given on it, you know, one of which was I noticed was actually it was irritability. Which I had no, you know I had observed in myself after a month.
Some people have used the internet to find out general information about osteoporosis or searched for information that answered their specific questions. But people who searched for specific rather than general information indicated a poor rate of success. Joan for instance couldn’t find an answer regarding whether taking the proton pump inhibitor aggravated her osteoporosis. Clare couldn’t find the information she wanted about medication dosage.
Other people, like Michelle, used the chat rooms on the internet to learn about other people’s experiences of osteoporosis, which she found helpful.
Michelle is a medical doctor; married. Her mother and maternal grandmother both had osteoporosis. She has always been physically active practicing several sports and jogging three times a week.
I’d like to have found a talk room for post-op for hip because I have two colleagues who had their hip at the same time and a lot of the things that the doctors tell you, ‘Oh you’ll be fine. No, you know, you’ll be rid of your limp in a year.’ Well I’m at week nine and I’m still limping and I have a colleague who’s not limping as much and I don’t know why and he had the same surgeon. He was operated the day before me. And he didn’t use as much physio as I did and he’s on his bicycle and I’m not and how come, you know. And what can I expect? And is this wrong? Or do I need to see a neurologist? Did I have a stroke interoperatively? Maybe you didn’t tell me because I know my blood pressure and my haemoglobin dropped from sixteen to seven and, you know, what what’s going on?
So there’s just and I know how much help it is to talk to these two colleagues. It’s a lot of help. People say, ‘Oh you’re doing wonderfully. You’ll be, you know, skiing next year.’ Well what a stupid thing to say. How do you know? You don’t know. You know, you don’t know anything about me. But this guy comes and sits down and says, ‘ Can you lie on your side and lift your leg like that? I did four of those this morning.’ And, you know, I’m, ‘Oh no I haven’t tried that. I’ll try it tonight.’ And it’s just so comforting to speak with somebody who’s living through the same thing and you say, ‘Oh you look wonderful. You look like yourself.’ Well you just got off the phone so you can’t even remember what you said so you know you’re not yourself. Not normal and that doesn’t show and it’s kind of depressing. People expect a lot of you and you can’t. So I know it’s very helpful to have somebody to talk to and these two people that I have who have had the experience so close to mine are doing so much better than I am. I need to talk to some people who are doing more exploratory things, you know, can you even get on your bicycle or do you have to stick with the stick with the stationary bike, you know. When did you make the decision to try, felt your balance was good enough post-op to try that so.
And you also need some bad stories too like people say, ‘Oh you’ll be fine. Don’t worry my ninety four year old grandmother she had that and she didn’t turn a hair.’ I don’t want to hear that. I want to hear how the person who couldn’t get from the kitchen to the bathroom without a cane finally overcame it. And I want to hear that they that it went all the way until month three or month four and they still beat it. You know, maybe they were really late but they still improved. Those are the people I want to talk to and I don’t think you can find them any other way but through the chat rooms. You know, I don’t see how else you could find them. You do you do a lot of people stop and talk and tell you, ‘My grandmother or my mother and [um]’ But they’re not they tell you the good stuff or they tell you horror stories, ‘Oh my uncle had that and he lost his life, you know.’ Well thanks a bunch [laughs]. That’s helpful.
But you its success stories that happen late so that you keep doing your exercises you have the optimum. You say, ‘Oh what’s the use now. I it’s week nine and I’m still walking with a limp. You know, I guess this is it for life. I’m not doing the physio anymore.’ Well that could be an outcome if you’re just in your own self. You could discourage yourself. And I think I think osteoporosis is the same.
For some people, the National Osteoporosis Society (NOS) website and their Helpline had been an important source of information and advice. Jenny was able to find out all the information she wanted about the medications offered to her by her doctor and felt able to phone their helpline with any problem. She thinks that both services are ‘brilliant’. Many people referred to the NOS leaflets and booklets as an important, and in some cases, their only source of information. Some people subscribed to the NOS magazine which they said was invaluable because it kept them up to date with pharmacological treatments. Younger women, who were osteopenic, found the forum on the NOS website was not relevant to their age group.
NOS helpline are answered immediately (as long as the caller gets through) and they do not generally call people back. A query submitted via email has a five working day standard response time and via letter it has a 10 working day reply standard.
Jenny is married and has one adult son. She was aware of osteoporosis before diagnosis because for many years, she has had a dairy-free diet due to ME and other allergies.
The website is absolutely brilliant. I mean just type in osteoporosis and all the information comes up. All the medication that’s available, the side effects. You just tap in one of the medications that might have been offered to you and it will tell you all about it, the side effects, what’s coming up. They had mentioned about the yearly injection, you know, before it was actually licensed. So I knew that was in the wings, waiting. So that’s, I think the website there is brilliant.
The NOS website?
Yes, that’s right. Oh, I don’t know if there’s any other websites but if you just type in osteoporosis it comes up.
So, that’s the main website you’re using?
Yes, that’s right. Yes.
And you also have phoned their help line?
Yes, their help line is excellent. They have trained nurses and I have used it three or four times. I am a member but it doesn’t matter, you can still ring the number and they, the nurses will give you any advice or answer any questions. Anything you have got problems with and they are very, very good.
And can you remember why you called them?
I phoned them about the Aclasta, the side effects. And when it was going to be... I phoned at another time about when it was going to be licenced. Because it was going to be last October but it, I think they put it back to the January. So I did phone about that. I did also look on the Internet for people’s comments. There is a sort of page, I think, where people have discovered all sorts of things with this osteoporosis and I was interested to read their comments. Someone found they had a neck problems, they had long hair like me, looked in the mirror one day and they were absolutely staggered to find out that their neck had gone over and it looked so deformed. So people’s comments and worries are actually on that, on the website so you can go in and… But the nurses themselves are brilliant.
Age at interview:
Age at diagnosis:
Diana is retired, a widow and has two daughters. She walks everyday and once a week, she and a friend go with their local walking club for a longer stroll.
So the last magazine I had, I read about it. And there is an injection now, isn’t there, come out? A yearly injection. Which, there again, you don’t know anything about it. I mean it doesn’t come to the fore. Nobody, doctors don’t say, “Oh, you’ll be able to have the injection now” or anything like that. You just don’t hear about it, you know. But it was in the, it was in the magazine that it was they were quite excited in fact about it coming out to help people.
So most of, most of the information, you, you have got it from the National Osteoporosis Society magazine?
Yes, that’s right I, I’ve read about NICE, you know, and I see you know. You know, you read what they’re trying to do and so on and so forth. Some months I haven’t, fortunately I’m able to lead, you know, an active life, and there’s times that I haven’t had time to read the magazine. Which isn’t a bad thing, because if you can get out and about that’s more important than having to sit.
Some people said that there is still a need to make the public more aware of osteoporosis. Some thought that TV, newspapers, etc were good vehicles for disseminating information and awareness about the condition.
A few people sought information from another health professional. Carol sees herself as ‘very fortunate’ to have a niece who is an osteoporosis specialist nurse, who has provided her with most of the information and advice she needed to overcome her initial concerns. With her niece’s guidance she has been able to confidently manage her osteoporosis. Betty said that her relative, who is a physiotherapist, gave her all the information she needed.
Married; two grown up sons; works part-time. She is a keen gardener but since diagnosis she regularly does weight bearing exercises. Maternal history of osteoporosis.
Where did you get your information from?
Well, I started I went to my I’ve got a private doctor that I that my husband’s got a private doctor and he uses when he’s, you know, in an emergency when you can’t get an appointment and so I thought, “Well, I’ll go an see him.” Just out of curiosity, just to find out a bit more because I had very little from my GP apart from the prescription. And when I went to my, the private doctor, he looked at the test, I took a copy of the test with me and the pills I was on and he said, “No, what you’re doing is absolutely right.” And I said, “Should I be taking any exercise? Any specific exercise?” And he said, “Yes, I should go to the gym and don’t do any running but do lots of weight bearing.” Which I never really understand what weight bearing is but so I did that.
So that that made me feel a bit better. At least I was on the right track. I didn’t need to go and see a specialist or anything. Then I think I went on to the web and went and had a look at the osteoporosis society website and I tried to get exercises from I thought maybe they’ll have a sort of list of exercises. That wasn’t terribly successful. And a diet I thought at that point there might be a diet but there didn’t seem to be much information on that side, not a great deal. And after that I just sort of carried on with the pills, the calcium, the exercise and that’s it really. That’s all I did.
What information specifically you wanted at that time?
I wanted to know I wanted to know about exercise and diet I think. Anything that I could add to the medication really. That’s what I wanted to know. And then, [sighs] I don’t know, I don’t think there was anything else particularly I needed to know. I just sort of felt there might be more I could do apart from take pills.
In some parts of the country, hospital clinics organise osteoporosis education courses, which are run by physiotherapists, specialist nurses and dieticians. The courses provide information and advice on medication, exercise and diet to encourage good self management. Iris and Noreen attended this type of course in different hospitals and both found it very useful and comprehensive. Many people we talked to would like information about these types of courses in their local areas.
Married; two daughters. Iris has recently retired and says that it is in denial about her osteoporosis because this was supposed to be her 'me time'.
Where have you got your information from?
Oh magazines. Internet. All this lot were sent through to me from one of the drug companies I think, for Adcal or the other one. And various information. But I read up about it when I was first diagnosed.
Do you remember which internet site have you looked at?
I looked on the National Osteoporosis Society website probably only that one. I think it was a forum or something or other.
How useful did you find the information?
Oh I found it. I found it quite frightening actually to be honest. I didn’t find it very relevant for someone my age, and I have been warned about that. They have a meeting place in [borough], but it is much more an old ladies…with people that have got severe osteoporosis.
And I also went, the dietician at [hospital] she also does a class an information class, a diet and everything else for people that are osteopenic and whatever and I went to that, and I took one of my daughters, I have got twin daughters and one of them is non dairy, so it was, you know, it was suggested that I take her with me, because you know, it could be relevant to her, even though I don’t think its hereditary I don’t know.
How did you find the class?
I found her class very good, because it was all about diet and everything else. And as I say I read up, I read as much as I could every time, you see something about osteoporosis then you read it don’t you, and lists of what foods are best for you, and you know.