Osteoporosis organisations and local support groups
The National Osteoporosis Society (NOS) is a UK charity that provides information and advice to people with osteoporosis. It works towards influencing change, to improve resources and services and to support research to improve treatment options and patient care (see resources).
Many of the people we talked to had heard of the NOS through their GP, other health professionals, friends and/or family member. They emphasised the quality of their publications and the assistance they have received from the Helpline staff. Some identified the NOS as their most important or, in some cases their only source of information and advice. Those people who had used the NOS Helpline recommended it to others. Several people we talked to were thinking about becoming NOS members (see also Sources of support for people with osteoporosis and Information needs for people with osteoporosis
Carol said that the NOS booklet on exercise is excellent. She is thinking of becoming a member...
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I had decided to become a member. I’ve not got around to it yet. But I will do it I know. I think that’s important too… very important. Hm.
And would you like to sort of join a local group or?
A local osteoporosis group?
I wasn’t even aware that we had one. We probably do. I probably would like to. It depends how much time you have to commit to that. Because if I’m going to join something I like to put everything into it, rather than just be a member and not participate. Yes I probably would like to do that.
But this National Osteoporosis Society I definitely would do. The only reason I haven’t done it is because I know it sounds ridiculous to say you haven’t got time. You make time don’t you? But yeah in the book I had from them it’s an excellent book on exercise. Absolutely excellent.
Several people said that they were given no information by their GP about the NOS at the time of their diagnosis. Emma who was diagnosed around 1994 had never heard of it and would like to get in touch with them to find out if there is a local support group in her area. Sarah who was ‘officially’ diagnosed in 2008 wasn’t given any information about the charity either. She was pleased to find out that there is such an organisation. Irene found out about the NOS when she listened to a lady taking about it on a radio programme.
Irene explains how she got involved with her local support group and became responsible for...
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From 1991 to 1994 I continued having that, went to my work and just more or less agreed I had osteoporosis. Nothing much was done about it at that time. And all of a sudden in the press there was an interview with some lady who had osteoporosis. She turned out to be the founding member chair of the [city] group, support group. So I phoned her and poured out my heart to her and got all the sort of attention which I needed and got a bit more support. And went back to the… I was still working. Well, she said, “You, you can do computing. Can you maybe come and do some work for me as, no, not a, not work as such, but a bit of voluntary stuff like doing the newsletter?” However, I had to say I didn’t have time at the time.
And in January 94 I went back to the osteoporosis group and offered my services, which were looking for committee members. And I thought, “Most people run a mile.” [laugh] However, she said, “Yes, would you please do the newsletter.” Which has been, I’ve done that ever since. And eventually I became the chair of the group.
Several of the people we talked to are or have been active members of the NOS at the national and/or local level and many felt that there was a great need to work towards raising awareness and knowledge of osteoporosis amongst health professionals and the general public as well as fund raising to buy or contribute to the purchase of a scanner for their local hospitals (see also Communicating with health professionals). Support groups members also said that their consultants and sometimes their GP actively supported their work. After diagnosis, Rose and her consultant often spoke to the media to encourage attention and discussion about osteoporosis.
Roberts volunteer work with the NOS aims to raise awareness of osteoporosis in men.
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I think what I’m trying to do is to. If somebody else finds themselves in my position it’s basically that they’ll have some better knowledge. I think when I was diagnosed with osteoporosis there was nothing really that, really for men there was hardly any literature to start with. And certainly there was no sort of other groups of men you could actually talk to. I’d like to think that we’ve come on a little bit from there now. And I think we have better diagnosis so there’s more men actually coming out of the woodwork with osteoporosis through better diagnosis.
And I continually. I have one of the things I do as well is counsel other suffers. So men will ring me and I, you know, I spoke to a gentleman yesterday just been diagnosed with osteoporosis. He’s depressed. He’s beside himself. He’s lost his job. And we’ve just talked it through. And everything that, what happened to me or how I felt seems to be exactly the same. It’s we have so many different things in common like depression, how you actually feel and you know, it is the same for most men. It, the conditions and symptoms are identical. So that’s what I’ve been doing for the last sort of two years.
Participation in local support group activities provided people with an opportunity to talk to others about shared experiences and to learn more about the condition and its management. Pat needed mutual support, company, understanding and socialising which were all provided by her local group. Pat’s GP told her about an NOS meeting in the city and encouraged her to go. Following that, a local support group was set up and Pat became actively involved in it. Irene’s local group organised a speaker’s meeting once a month. She said that talks given by specialist doctors and nurses are always well attended.
One of the benefits of Pats local support group is the opportunity to talk to others.
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I’d been to see my GP. This was just after I was diagnosed. And he did tell me that, they must have had information, that the [city] group were holding a big launch at, in the [city] city centre. So my husband took me down in the wheelchair. And listened to various speakers and decided then to join the Osteoporosis Society. Got very involved. And after a couple of years I was asked if I’d be chairman. Which I did up to three years ago, two years ago, when I was very ill again with the rheumatoid arthritis, couldn’t get about or anything. And my family said, “I think you ought to pack it in, Mum, because it’s too much for you and when you’re ill you can’t cope, you can’t do it.” So I did resign, but still kept being a member of the group.
And what has it meant for you to join a support group?
To join? Company. Get me out of the house. Gives me a lot of support. We can talk, all talk about all our different problems. The helpline is there at the end of the telephone, who are absolutely brilliant, they really are. Any problems, you can just give them a ring, any sort of problems. But you can talk to each other about all your different problems. And, as I say, it gets me out of the house. Because I can’t, with the rheumatoid I can’t walk to the top of the street. I mean there’s a shop just round the corner. I can’t even walk round to the shop because of the joints. So I spend all day here.
Irenes support group organises various activities including talks by local health professionals.
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Well, we meet once a month, the second Thursday each month and we try to have, well, we try to have speakers that are to do with osteoporosis. We try to have a doctor, one of the osteoporosis nurses, a physiotherapist and hopefully a nutritionist is supposed to be there. It doesn’t always work out. We have got, we have several patrons. We have a political patron. We have a physiotherapist, that was the one that started off the exercise as a patron. We have a Glasgow writer as a patron. And we also have a, another clinician as patron. So we can always go to them and say, “Will you please come and give us a talk?” And people come along and say to us, “Oh, I thought you were talking about osteoporosis.
And this is where I come out with this thing again. “But we’re not here to dwell on the fact we have osteoporosis. We’ll talk to you about it. We’ll give you our support. We’ll tell you what we have found.” Because we’ve all been at the stage of being, feeling isolated, feeling, “What on earth has happened to me?” But I think part of the thing is that they describe it as being crumbling bones. And I think the fear of that is you could look at one of these characters in a cartoon where someone raps you over the hand walks away with you in the end because your bones have crumbled into the bottom of your body. And I just say, “Well, that’s not really what it means. It means ‘do something about it’.” Although I must admit it isn’t always possible. People have got a lot of things, and they have osteoporosis come along with other things involved that you think, “Well, okay, you need support, so what can we..?” And part of it is the fact that we can’t, we don’t give medical advice, we’re not medically qualified. But what we can do is say, “Well, if you speak to Dr so-and-so or...” Well, we’re very fortunate, the doctors are very very helpful with us, very helpful and very willing to come and talk to us. And they, I think probably because we are very much involved with the health board as well and we’ve got the support of the health board. And they come along, the nurses are great, they come along and talk to us about, they tell us about different sort of things, all different aspect of things. We’ve had an occupational therapist along to talk to us. Which was good, because it means that we know. It’s especially good if we’ve got a newcomer at the group that doesn’t know anything about it. Most of us are old hands at the group, “I’ve heard this story before.” But it’s good to refresh our memories about things. And it’s especially good if a newcomer comes along that’s totally, “I’ve got osteoporosis. What am I going to do?”
And they find out, “Well, you can sit and enjoy our company. That’s one of the things you can do.” And, well, we try to have other things like, we have, because we live in this city, we try to have something which is related to the city. Because somebody once asked me, when I was chair of the group, “Why are you having this..?” I can’t remember what the thing was. And I said, “Well, it’s because we are in the city and its part of the history of the city and it’s good to find out about it as well.”
As well as getting support themselves, a few people worked for the NOS as volunteers. One motivation for doing volunteer work was to share with others what they have learned about osteoporosis from their own personal experiences. Ann and Robert are contact persons for the NOS and as such they talk and listen to newly diagnosed people who want to talk to others with the condition.
Ann believes her local group can do a lot for women who havent yet been diagnosed.
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Does it help talking to other ladies who has who have osteoporosis?
Oh yes. I mean our the support group that we have for the last two years we’ve held five meetings in and around [city]. This year we haven’t because we’ve had problems with the various venues. Next year we will be holding again five meetings, please God.
But yes, talking to the, the ladies and the gentlemen who attend the meetings, the ladies who attend chat to other ladies and discover that they’re not alone with their problems, you know. Other, other patients other ladies have the same problems and together they can work out a solution and are happy to speak to somebody else because they realise they’re not alone. And the, the group itself its worth it’s worth it’s worth all the effort we put into organising the meetings for that reason alone.
I was first diagnosed in the July. Yeah, I knew there was I knew about the osteoporosis society because I used to have the journals as a practice nurse. Then when I had this diagnosis I rang Camerton the Osteoporosis Society headquarters, and asked was there a support group in or around [city]. And I was told, yes there was one in [city] which was going through the doldrums but was hoping to regenerate itself and there was one in the [district] area. Well, I latched onto the [city] one because I knew exactly where it was meeting. That was the only thing I knew about it at that time. An introduction was made, I presented myself at the door of this delightful lady who hosts the committee meetings and they haven’t let me go since [laughs]. You know, and I’m a contact person, it’s taken over my retirement almost and it’s worth it because so many people are being helped.
So you’re an active member?
Yes, too active according to my husband but then I quote him his work with the model engineering club in [city] you know, touché. Yes, I am an active member and I would like to continue being an active member because I feel that there’s there are a lot of ladies out there who haven’t yet been diagnosed. And I would like to think, this is not meant to sound big headed, oh God please don’t let this sound conceited or anything, but the [city] group we can do a lot more for a lot of ladies who haven’t yet been diagnosed. You know, and I think we need to keep ourselves active for that reason.
But had I realised how involved I was going to become [laughs] maybe I, [laughs] maybe I wouldn’t have put my foot over the committee room door. But things have certainly taken off in my retirement.
Victoria Iris has been involved with the NOS at a national and local level for many years. She...
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We started a group in [city]. At the time I was looking after my mother there was a note in the local paper saying there’d be a meeting at one of the local hotels. And my brother saw it in the paper. He came armed with the newspaper and by this time he had retired and he saw it, brought the newspaper to me and said, ‘You’re going to that meeting’, [laugh]. And I said, ‘Am I?’ He said, ‘Yes’. I’ll come and look after mother and you can go with [name], that’s his wife. So the two of us went to the meeting and from that we started a group in [city]. So I have been connected with that throughout. At one stage when the chairman opted out for a bit I took over with a view to it not being permanent because I’d got enough to do. I’m always being supportive and I’m always on the committee.
Then I went to a meeting, a national meeting to do with osteoporosis and I was sitting there and the chairman, like the chief executive, came to me afterwards and she said, ‘Can I see you?’ And I said, ‘Well yes’. She said, ‘Are you in a hurry?’ I said , ‘No I’m fine.’ So I think this was London was either London or York. Anyway she said, ‘I’d like to get you more involved in our society and the next thing I knew I was the first lay person on the council of management and trustees.
But I’ve also spoken to every conceivable kind of group of, from the society' nurses in London, I. and they’ve asked me to go so that the nurses could ask me the questions. And in a way I think that’s been very beneficial because. And I think it’s even more so at the moment. They need to know to be able to speak authoritatively themselves. When I ceased to be they felt they couldn’t keep me any longer, you see 6 years so. But then they found me another job and that was to be in charge of a group that meets about four times a year.
I mean I’m not too keen on August because all the societies like exercise and things finish. I’ve got little paperwork but once September starts there’s plenty to do. And in a way I’m able to cope with that and that is mentally good for me. It, it’s what you need, stimulation mentally and physically as you get older, never mind osteoporosis. But that I find I enjoy that. I feel I’m doing something worthwhile and we can get our teeth into things. I’ve got a meeting. We start meetings in September and then I’m kept quite busy.
So you like to be kept busy?
Oh yes. Oh yes, yes. I don’t get fed up with life and I don’t get depressed but I, I am, always have been, I’ve always been better if I was motivated and got plenty to do at whatever capacity. And I think that I am better for it. Well I wouldn’t be here talking to you if I wasn’t.
I feel very much that I’ve learnt a lot but I’ve learnt a lot through experience and if only we could make what I call the next generation and the one after that. It’s. I mean if I’d got more time I’d be doing work in schools. Then I’ve got as much as I can do but it is two generations away we should be working on. And, and I mean I’ve seen a girl who, mother couldn’t hug her because her bones were so fragile and she’s confined to a wheelchair. Now that’s. What it is you don’t want to depress people but if they are prepared, they, you can’t cure what I’ve got but you can prevent it getting any worse. And I mean a lot of people manage to impede the onslaught of it by being diagnosed early. And that’s something that I’m, I wish we could make pe
Robert also gives regular talks to people. He said that his work with the NOS had given him an opportunity to use some of his professional skills and feel that he has a public, useful and productive role again.
Roberts volunteer work with the NOS has been a lifeline.
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Really what I do now is, isn’t dissimilar to what I used to do as a job. I used to talk to groups of people. I used to give presentation to, you know, 20, 30, 50 people whatever or it could be a couple of hundred on a sales conference or. So I was used to talking to groups of people. I was computer literate so all those skills came in useful for the NOS. It sort of. And I think I’m a bit of a raconteur. I think I’m going to tell my story quite well so it goes down. It’s a dramatic story anyway but I think it helps that it, you know, it’s. I find it quite easy to do that. And I. It’s almost like performing on a stage [laugh]. I quite enjoy going up and doing it, like I get a buzz out of it. Where some people I think it’s the third most stressful thing for people to do is talk in front of an audience. I find it the least stressful thing. You know, it’s amazing but then I couldn’t do some of the things that other people can do, you know. But, so like, that was important.
The NOS was a lifeline in that respect. It offered me an excuse to do something and it needed [wife]’s 100% support really because it’s voluntary. So it’s you’re not doing it for money see. And it takes a lot of your time. But [wife] realises how much it means to me so she 100% supportive of it. So she never moans when I’m away or I’m going to do something for the NOS. And she’s quite, you know, quite happy about that because I think she realises the importance it is to my life. And almost I regained my purpose in life really. It’s given me another focus really and I’ve got my focus back now. I’ve got this sort of target to do something for the NOS is to try and achieve something and it’s brilliant. It’s exciting and it’s you know. And I’m involved in some of the decision making up there. A lot of it is nothing to do with me but they do involve me in some things. But it’s nice to dip in and dip out. And then when I don’t feel well and I feel tired or I might do one thing a week and then that one thing is something to look forward to. It’s in my diary but then if I don’t feel well I can either cancel it or it can be postponed or you know I do it and then I have the following day to get over it. So everybody wins. You know it’s a good one.
Rose and Margery had retired from active membership and hope that other members will take over and carry on with the work. Based on her experience, Margery has observed that the support group’s emphasis and priorities have changed over time and that initially a lot of the work was about lobbying and campaigning for resources and better medical awareness. She thinks that local groups perhaps tend to be stronger where NHS provisions are ‘thinner’.
Margery talks about some of the benefits that the National Osteoporosis Society can offer.
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One of the problems at the moment is that the people who founded these groups, perhaps as much as twenty years ago, are now getting much older, and we are finding it very difficult to get people to come into groups and to take, as we have here, to take over roles, say of chairman or treasurer or secretary. And unfortunately some of our groups are having to close, but others are coming forward and I think the group probably serves a better function, in an area where the National Health work for osteoporosis perhaps is a little thinner on the ground and it is almost as a natural cycle where you have a group in an area where the local provision is not great, that group can encourage, it can lobby, it can work, it can raise awareness and it can encourage these services to be provided by the NHS and in a way the group has perhaps then fulfilled its purpose and its role can be taken over by the NHS, so there is a kind of pattern across the country, of areas where you have very strong groups, able to say, well we have done our job. We can hand over, we’ve got a good service locally, we’re still there, we can still support people, but we haven’t perhaps got that lobbying function that we had initially.
So groups come and go, they fade in and out, but there is still an important role for them to play and some of our groups are absolutely wonderful. They do a fantastic job and they have people full of enthusiasm keeping them going, offering support. We must never, ever think that lay people can give medical advice, but there is a role for support, for people who want to share their experiences with other people who are suffering from the same condition, who know that there is somebody there sympathetic, who understands what they are going through, who can come to us, rather than bother the doctor, to get a leaflet about osteoporosis, to find out what the treatments are, what the latest developments are in osteoporosis research. So the group has an important function to play. It may have to change its, the way it works, it may not be able to function perhaps as regularly as it did when its committees were younger and fitter, but it still has an important role to play.
If you need some support, emotional support, may be when you are in pain or feeling a bit down, who do you get that emotional support from?
The best thing I think or one of the best things that the National Osteoporosis Society has is their telephone help line which is available to members and non members and at the end of the help line there is a team of nurses and speaking from personal experience I have found them sympathetic, warm, very knowledgeable, very encouraging and able to answer just about any question that anybody wishes to fire at them. I really think that the help line is one of the best things that we have to offer. In addition of course a great range of literature available to members and non members but if you want a one to one conversation with a knowledgeable sympathetic person, then the help line is the answer.
Reasons for not joining
The majority of people who weren’t involved in the NOS or didn’t join their local group said that they either were not aware of it or they didn’t feel they needed that kind of support (see Information needs for people with osteoporosis).
Several newly retired, active women, who want to do the best to help themselves and halt bone deterioration, felt that the NOS was not adequately addressing their needs. Iris, who would like to talk to other women of her age group, said that she was ‘put off’ from attending a local support group after someone she met at the hospital told her that it was ‘full of old ladies’. In her many years of work for the national and local support group, Margery has noticed that the people who tend to find it difficult to engage with their work are those who ‘regard osteoporosis as associated with growing old, and looking like an old lady with a bent back’ Susannah used to belong to a local support group but she has withdrawn her membership. She thinks it is a good organisation but added ‘don’t ask me to enjoy it’. For Susannah it became depressing to talk about illness. But Irene made the point that her local group organised an array of talks and that some of them are about local history and culture and not exclusively about osteoporosis.
Iris was put off by her local group because she was given the impression it was for elderly people.
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You see I have not given the National Osteoporosis Society a chance, to even see if other younger women are turning up. But then, if the women at the hospital says, “Don’t go. It’s full of old ladies.” Then you are not going to are you?
Okay, so you haven’t found out by yourself on your own. So you haven’t been there?
No, no, because I was put off. I was put off in that it was not relevant to me. When I went to [name], who was the dietician, at [hospital] and she had her class, there was some, you know, there was some people there, that some were osteopenic and some were osteoporotic. And I went with my daughter and that, and you know, that was okay. They weren’t elderly. I don’t know why, I can’t see in my mind what I would consider elderly. I think….
There is no time to waste. You don’t expect to get hit with sort of things like osteoporosis and this that and the other. And some people don’t expect to get hit by death at 60. And I honestly, I honestly believe that that is what your life is about. It is about making the most of it, and doing it. And that is it. So you know, I am in denial about this. This is for when I am elderly and at the moment I am not elderly. Because I have got this problem with being elderly.
Margery believes that the NOS needs to find ways to engage more people who have osteoporosis or...
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There are some people who regard osteoporosis as associated with growing old, and looking like an old lady with a bent back, and one of the things that is most difficult is to involve those people who simply do not want to acknowledge the fact that they may have osteoporosis or they may be at risk of it. I think all of us in groups have come across the person who you only have to look at and you know that they have osteoporosis and you very tactfully put this to them and the response you get is, I don’t want to know, I don’t want to admit that I’m getting old. And people sometimes wonder why our membership figure at about 23, 24,000 out of a population where we know that one in two women over fifty is at risk of a fracture why are not more of these people members of the National Osteoporosis Society? And I think this could be part of the answer. That we must find a way of getting through to these people that they must acknowledge the fact that osteoporosis is there, that they have it, or they are at risk of it, and that something can be done and that they are not going to end up looking like their grandmother who was bent double at 85. That medical knowledge is now so much greater and that osteoporosis is something that yes, you have it, but it can be treated. I am not in a wheelchair at 72, but I was told that without treatment I would be. And we must get through to people that it is not something that just old ladies suffer from and that if you have it, that’s it, nothing can be done, and you are going to end up looking like a question mark with a bent back.
Several women said that they would join their local group if there were talks or other activities provided which they were interested in. Susannah would be interested to learn more about Dynamic Motion Therapy (DMT), which is a non invasive treatment developed for NASA to enable astronauts to control bone loss and muscle atrophy. She would also like to learn about the appropriateness of using power plates machines available in some health clubs. DMT/vibration therapy is a very exciting non-drug approach to bone health but more evidence is needed that it reduces risk of broken bones in people with a fragile skeleton. Others, like Chris, said that she is not interested in joining any group because osteoporosis doesn’t really affect her but she would appreciate any information they could give her.
Valerie would go to her local support group if they ran a class on the benefits of weight lifting...
If a doctor sat down and told me that, you know, there’s certain stages and that you know I may or may not get them and I might be able to prevent them etc. that would perhaps be quite interesting or. But I don’t want to go to a support group type of thing' people telling too many bad stories. So I say I’m lucky that I didn’t break anything and I’m aware that I’m potentially fragile so I can be careful about that.
So you are not interested in sort of finding out about support groups and what they do or they don’t or?
Not really unless it, they have things to contribute which are sensible.
Well I mean I heard a programme on the radio funnily enough a few years ago which I found quite fascinating which was suggesting that if you went. They did a programme where people were doing weight lifting with osteoporosis even in their 70s and that they had quite a high percentage of reversal of bone loss doing weight lifting. Now if there were some possibility of going to a class which was specifically directed to that. But when I went to the gym and I said that, you know, I gathered weight lifting was quite good for what I had, they were quite reluctant to have me weight lifting actually.
Last reviewed June 2017.
Last updated April 2011