Osteoporosis

Messages to doctors and nurses working with people with osteoporosis

We asked the people we talked to, to suggest ways that health professionals could make things better for those living with osteoporosis. Here is what they said:

Communication and attitudes

Do preventative work. Make us more aware of osteoporosis, particularly those over fifty.
Be compassionate and sensitive, sometimes we are in a great deal of pain.
Make sure that the chair that your patient sits in is comfortable.
During examinations treat us with care. We are frightened of having fractures.
Give us the opportunity to talk to you, particularly if we are elderly.
Be sensitive to our problems and our needs in living with a chronic illness.
Allow people to do things in his/her own time. Don’t rush them.
Reassure us when you see we are frightened and nervous.
Offer assistance, people do not often ask for it.
More TLC (tender loving care).
Treat us as somebody who is important.
Be friendly.
Be knowledgeable.
Back pain should be investigated. Don’t send us home with painkillers.
Regularly monitor our treatment. We want more than just repeat prescriptions
Send us for regular DXA scans
Don’t let us cope alone. Organise patient-information groups, meetings
Think creatively when you are listening to someone’s symptoms
Give calcium supplements to young people.

Allow people time to get up from a lying position after an examination. They will be slower and are frightened of having another fracture.

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Allow people time to get up from a lying position after an examination. They will be slower and are frightened of having another fracture.

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Age at interview: 76

Sex: Female

Age at diagnosis: 57

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They should know that people are so nervous and frightened of having another fracture that they, that they should treat them very carefully. And I notice that lots of medical people, even the people who do the scans, think you’re going to get up from the bed like this. When you’ve got osteoporosis you can’t. You have to roll over and do it in a sort of special way. And lots of them don’t realise that. I mean, you know, some say, “Oh, you can get up” and think you’re going to get up. So they’ve got to realise that you have to, to get up from a lying position in a very special way and that people with osteoporosis are very frightened of fracturing again. I’m always, I’m talking about in the beginning, but even now I wouldn’t dream of getting up s-, s-, just from lying prone like that. It has to always be that position, you know, to do it and do it very carefully. That, that people will be a lot slower, you know. You see I, I realise how, how painfully slow, I’m really careful even now when I sit down in places, because it’s sort of habit really as much as anything. And, and, as I say, that I think is the important thing, to find out how the patient can get up herself, his or herself and not try and, not try and help them to do anything. Let them do it in their own time. But that really is the most important thing I think. Because I was terribly frightened of fracturing again. That was my biggest fear for so long.

So patients should, could do without that pressure of…?

Yes, they do, they’ve got to do things in their own time. Especially, do stress that bit about getting up from the lying position, the lying-down position that they have to roll over and get up carefully. I, I could demonstrate it, but you know what I mean. I think I’m explaining it all right. But people, people don’t realise that. Nurses don’t. I’m surprised. You know, they, they think you can just get up and that’s it.

Provide ongoing support for the newly diagnosed and opportunities for people to share their experiences.

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Age at interview: 60

Sex: Female

Age at diagnosis: 59

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I think, if, yes, I think when you first get diagnosed you need time to digest this information and to go off and to start living with it, and assimilating all the information, and the dietary changes and all the things that you are actually going to do and I don’t think it’s good enough, just to have one call back, and then be left, that’s it. I think it should be regular, you know, come back after three months, and then another three months, until it gets to you that you think oh have I got to go back again? Oh. Do you know what I mean, so that all things that occur to you when you are living your life and all the things that you are not quite sure about you know that you are going to go for an appointment, and you are going to be able to speak to someone and may be they should be doing groups, you know, so their appointments become like, I don’t know, just sit round and what’s your experience, and do you get pain. So that you could actually sit and talk to people with a professional there, so that they can answer these questions and feelings and feelings is a bit, you know, I am not asking for counselling sessions, that is not what it’s like the unburdening information, you know, group. So that another girl, see here I go again, girl, my age, another girl going through the same thing as me. We can compare notes. It is not that I am not trusting of the internet, because I, you know, I have been on a computer for years. I don’t know, I am just such a socialised person, that, you know, I would want to talk to you about it, and you know, or another girl who’s saying to me, “Oh have you tried and such and such yoghurt?” Or, “Have you done so and …” Just first off of to get you into the, so you are not on your own dealing with this, and you know, to say to someone, “Oh, don’t go to that group, it’s full of old ladies.” Do you know what I mean. So you are actually, ready, you’re isolated. You’re not going to find anything there because they are too old. So I think, yes, I think an aftercare, if you are going to be signed off to your doctor, do it after a year or something, or have a regular group or something, you can just go to with a professional, someone who’s got the answers, they know.

Think creatively when you are listening to someone's symptoms.

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Age at interview: 42

Sex: Female

Age at diagnosis: 36

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If you’re a young fit doctor, I don’t’ think it’s, it’s quite hard really to understand someone’s pain. I think you, you do count, it is one, is it one to ten, and you’re like half of you’s going, “Well, I can’t really say 10, and I can’t say 15, oh I’ll say, I’ll say 7.” You know, because, and then I’ll sound as if I’m being like overly, you know, pathetic. And so a 1 to 10 scale of pain really is, I suppose I can understand them doing it, but I don’t really know because I know they haven’t got time really. So it’s not actually, it’s not actually them it’s probably, you know, government. But I know things have to get paid for.

But I think creativity is probably, and a lateral thinking of associating things together. So if you do have somebody who sits there and goes, “I'm covered in this rash, it’s really itchy and I can’t walk. And I’ve had irritable bowel since I was 9,” then, in my head when I hear stories like that I think of linking things together. And I think that, think because it’s textbook taught to very pragmatic minds, I think it’s hard to be creative about what could be wrong with somebody. Because also there’s lots of people there that there’s nothing wrong with them. So they’ve got that to diffuse out. But I think listening to, when somebody talks about their problems, and if you think creatively about it you can link things together. And so if anyone had noticed dermatitis herpitiformis all over my body, including all the doctors I saw, but it wasn’t in classical places. So it wasn’t on my elbows and my knees, which is understandable, then somebody might link that I actually had coeliac disease. Which then could have meant that somebody could have stopped eating bread and took lots of calcium and then I wouldn’t have gone through having my body ripped to pieces really. I think you’ve got to listen.

OK, so that’s the message?

Yeah. We should listen anyhow, though, but I listened to just one person they have to listen to hundreds of people with different stories. An x-ray. An x-ray would be quite useful. Because I didn’t get one for six weeks. So, and then someone to read it of course.

Increase awareness and preventative measures amongst young people.

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Increase awareness and preventative measures amongst young people.

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Age at interview: 63

Sex: Female

Age at diagnosis: 45

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When you look at when do you put on bone density, you know, bone density is the biggest risk for fracture. You put on bone density between the age of sixteen and thirty. In girls the fastest growth is something like fourteen to sixteen. In boys it’s something like sixteen to eighteen. How come there’s no public policy for calcium supplement at that time of life? It’s exactly the time of life when they’re not drinking their milk because they’re drinking Pepsi. Or worse, booze. And I there’s no public, I’ve not heard anything here or in Canada or in France that says, you know, let’s focus on that as a real prevention.

I think if we were seriously interested in prevention of chronic diseases just as though we look at obesity in children. If we say, ‘Well that causes health problems in late life. It might help with diabetes or it might help with cardiac disease.’ There may be other conditions as well but osteoporosis well known to be to bone density, original bone density. And when do you get that? You get that in your teenage years and then probably peaks when you’re around thirty of something like that. There’s no targeting for that population and I don’t think they’re educated at all. I mean they don’t they’re no not young osteoporotics but young people who are not osteoporotic and they need they. And we give them mumps vaccine why can’t give them calcium supplement? I there’s no reason why not or even just improve school lunches so that they have a little calcium anywhere on that tray would be good.

Advice and information about osteoporosis

Give us more information and support particularly if we are newly diagnosed.
Tell us everything we need to know about our condition. Don’t send us home with just a leaflet
Suggest other sources of support and information
Give more advice on exercise
GPs should learn more about osteoporosis.

Provide written information including a list of resources of where to find out further information about osteoporosis.

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Age at interview: 62

Sex: Female

Age at diagnosis: 60

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I think they should tell you more. I think it’s in a doctor’s position to tell you a bit more about the disease. I know they have they’re, they’re restricted with their time but if they haven’t got the time they should they could provide you with a leaflet, a book. Anything, they could provide you with a list of diet, exercise and what is osteoporosis and how it might turn out or not turn out. I don’t know. I think there is there’s always been a lack of good information from GPs but I think it’s just the, it’s probably just our economics of our times really. But that’s what we should have is a bit more information to take home and look. And, and it’s no good just talking to you. You need to be able to think about it afterwards and if you’ve forgotten half of what they’ve said you’ve got nothing to go on. So I think, you know, maybe just a news sheet. Just one piece of A4 paper would help. Maybe with some website information or some good books or something so that you can find out a bit more about the disease. Because actually, you know, unless you get it at, at my age why would you know anything about it?

When telling a patient their diagnosis, spend more time giving them explanation and information.

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Age at interview: 66

Sex: Female

Age at diagnosis: 58

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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.

Last reviewed June 2017.