Here, the people we talked to discuss their health care experiences. They talk about communicating with health professionals and the care, advice and information they have received from their GP and their consultant and/or specialist secondary care nurses.
The ongoing care of osteoporosis for most of the people we talked to is provided by the GP. Some people were very satisfied with the care received and used words such as ‘caring’, ‘helpful’ and ‘understanding’ to describe their GP, and the care they had received. Interestingly, these people thought their GP was ‘pro-active’ rather than ‘reactive,’ meaning that their GP acted swiftly and competently on their behalf. Dennis commented, ‘my doctor doesn’t let the grass grow under her feet. She is marvellous’.
Dennis is married and has two adult children. He has had depression for over twenty year. He said he is very lucky because he has the support of his family, GP and consultants.
How is your GP, how is your relationship with her?
She's absolutely marvellous. The only thing is you can’t get an appointment very often.
How long have you been with her?
Well I've been with the surgery longer than she's been there. Oh thirty years. I would say. And all the doctors there are marvelous you know. If you can’t go to see your normal doctor, there is always an appointment free for another doctor. And they're all very good. They look after me. They really do. If I've got any qualms at all I just have to go there and they sort me out. You know,
Oh definitely, yes, every time I see the consultant he writes to my GP. And my GP has written to Professor [name] at [name] Hospital about changing my drug, so I'm just waiting to get an urgent appointment to see what they're going to put me on. But I was told a couple of weeks ago when I had the infusion that I would be put on a new drug once I've had my annual consultation. So they are just pulling it forward for me.
So when is this annual consultation?
Well it was, it's coming up in June, but I think they are going to try and get me in sooner in view of the letter my doctor wrote, because she feels I shouldn’t have had this happen. I should have been on a drug that would prevent this happening. But whether that’s the case or not, but that is what she wrote anyway. Well that is what she told me she was going to write.
So everything was quite fast kind of the whole thing?
Oh yes, my doctor doesn’t let the grass grow under her feet. She's marvellous. [laugh]
So it was sort of, she referred you straight away?
Straight away yes.
Straight to the hospital?
And she'll also said if you haven’t heard within a fortnight let me know. She's really good. Well, the whole surgery's the same.
Age at interview:
Age at diagnosis:
Carol is married, works part-time and has two sons. Initially she felt devastated by her diagnosis but now she feels lucky because she can take control of her osteoporosis.
How do you rate your experiences with the health services, about how your osteoporosis is being managed?
Well I think it’s excellent. I think it was excellent the fact that as soon as I broke my wrist, well it was virtually within four weeks, my doctor actually contacted me. And asked me to go to the surgery. Whereas I don’t think that happens very often. Maybe it does in some areas. So I thought that… I thought she was brilliant. And then when I went the fact that she suggested I have this medication in case I had osteoporosis because we didn’t want to loose those months. And then she’d arranged for this DXA scan. I thought she was excellent. Yeah brilliant. I’m very lucky.
Yeah she’s excellent. She really is absolutely, 100%. Hm.
So you, you have trust in her?
Yes she’s really on the ball. And she’s proactive rather than reactive. Yeah she’s very good.
For how long have you had her?
Well funny enough, she’s one of a group. And obviously when you make an appointment you tend to see anyone of the group. But I happened to see her when I had the fracture. So it was fate really [laughs]. I mean the others maybe as good. I don’t know because I’ve only been involved with her. But yeah she’s excellent and I’m very lucky.
It… I mean we’re, we’re considering moving and it, it sort of makes you… those are things that you have to consider when you make a move. If you change your doctor, if you have doctor that you totally trust, are you going to find another one that you totally trust? Yeah she’s excellent.
Also, some people identified the whole GP practice as helpful and caring. Valerie, who is a patient in an all women’s practice in the inner city where she lives, said that the care she received was better than she anticipated. Elizabeth thinks herself ‘lucky’ to have a medical practice which is concerned about her wellbeing.
Works as a freelance interpreter. To include walking into her daily routine she uses public transport. On average she walks around seven miles or more per week.
Well I think that given that I’m in an inner city area it’s better than I anticipated especially with the GP I have now. I say, he does express sympathy and she does give you whatever tests you ask for.
Ok so your expectations were lower?
Well yes especially after the first man. In fact I tried two GPs in the area. The first one who wouldn’t look at my back and then. I went along to another one and that one closed down shortly afterwards because the doctor was struck off and it was being run by a practice nurse in fact who was quite good so then having had this experience I wrote to the Health Authority and said I’d heard of this practice which is all female so I said that I needed to go somewhere where they were all female. So they could have draw whatever conclusions they want from that. So I went to see the practice and they said, “Well we’re full up but if you write to them they, they might impose you on us.” Which they did so I got that quite quickly.
So you identified this practice?
Yes friends who’d being going there and they said it was an all female practice and they were very nice. So I went there and I usually. I don’t go more than once a year and so far I’ve usually seen the same doctor. Once I didn’t, I saw one of the other doctors who was equally charming and sympathetic.
So why an all female practice?
Because I feel whenever I’ve done anything like dentists and eyesight, whenever I have to do with males they look at your age and discount you. They treat you like an old lady. And the women are like seeing a school friend. I feel more comfortable. I didn’t have this experience in France. I always had male doctors and I always found them to have a different attitude towards women. Women are finished once they’re getting older here whereas the French doctor and no doubt a Spanish one will flirt with a woman of 100 and say, “Oh no we can’t have that, no that doesn’t look nice. You know you’re still a woman.”
Here no. I feel that strongly actually which is one of the reasons I’m not keen about mentioning my age and things. But once people see it written down you’re written off. But the continental thing, I mean most countries in the world you’re a woman. People can still treat you like a woman. Treat you as if you might be attractive even older. It is a bit of a joke but here it would be called harassment. So a very different point of view. But I’m not comfortable dealing with men in this country.
Some people we talked to were not happy with the care they had received in primary care. There were several reasons for this including little consultation time, difficulties in seeing their GP of choice, unsympathetic doctors and inefficiency and also lack of continuity of care. Jane, who developed osteoporosis in pregnancy and was not diagnosed for many weeks after the birth of her son lost trust in medical advice because of the experiences she had with her doctors. Valerie left one practice and moved to another after she was unhappy with her GP.
Some people said they would like to see the same doctor rather than a different one every time they attended the practice. Beryl sees the same GP each visit and this continuity of care is very important to her. In contrast, Susan says that she sees many different GPs in the same practice and they often ‘have no idea what I’m talking about.’ Joan said that she finds it easier to talk to the GP that she has known the longest.
Susan lives on her own but her daughter lives in the next village. Susan's mother had osteoporosis. She would like more information on non-drug based treatments for osteoporosis
I didn’t know what, how this NHS works sometimes because I had so many papers got lost, couldn’t find the information from one doctor to the other doctor. They didn’t inform the GP so I sometimes lose a bit of, you know, hope in that that, you know, it's just. NHS is very good they’re doing marvellous for my grandson. You know it’s very good but sometimes there are failures obviously so. But I think it would be nice if in situations like that things were a bit more co-ordinated than, you know, everybody knows about what the other doctor was doing, that they are not having to look up everything. They are spending 5 minutes trying to look up or find a paper which is relevant to what happened four years ago or three years ago. And that always takes up the 10 minutes at the GPs you know. Because, you know, they see millions of patients there obviously. And if you don’t see the same GP which a lot of times you can’t then you know they have no idea what I am talking about. And then they have to spend half their time or more trying to look up and you know. So that is very difficult. So there is no continuity basically I feel.
The one issue that was raised time and again by most of the people we talked to is that they did not have sufficient time with their GP. Many people felt that the 10-12 minute slot they were allocated was not nearly enough time to discuss all their concerns and to get answers to the many questions they had about osteoporosis, its treatment and what they could do to help themselves. Often people felt uncomfortable about taking too much time with their GP because they knew that other patients were waiting their turn to see the same doctor. Some of the people we talked to thought that the NHS was under strain and that the little time allotted to them was just ‘a sign of the times’. You may wish to discuss the fact directly with your GP that you would like a longer appointment with them, and make a mutually agreed time for this consultation. Most GPs will agree to this, as they also feel frustrated at the Government constraint of a 10 minute appointment.
However a few people said that their doctors did answer the questions they had. Susannah said that the specialist she saw at the hospital and her own GP were both willing to answer any questions and explain anything she wanted.
Widow, retired secretary, lives on her own flat in sheltered accommodation. Betty uses herbal medicine extensively and has accumulated a great deal and knowledge about it.
They need to have far more discussion with their patients. I know it’s a question of time. You get ten minutes at the doctor and not a minute more between appointments. It isn’t time to discuss anything. You go up with a problem and you come out and think, “Well, I didn’t really resolve that, there wasn’t the time.” And this is the main, main problem everywhere is time. When you’re older, particularly unless you’re organised enough, which I used to be, but I haven’t been quite so much lately, you know, to get a you need to put down a list of everything you need to ask. Otherwise you find that you come out with not the answers to half of what you wanted to say and anyhow they haven’t really got time to listen to.
You need to go up every week almost to tell them a different fact to get everything resolved otherwise when you do go you only get the answer to one problem that you have wanted. You just need more time and much more love TLC shall we say.
It’s everything is so rush, rush, rush these days but that’s a complaint of the whole of society I think. It isn’t purely the medical profession.
Susan lives on her own but her daughter lives in the next village. Susan's mother had osteoporosis. She would like more information on non-drug based treatments for osteoporosis
I just find that doctors never give you enough time to discuss these kinds of things. You know if you’re ten minutes is up that’s it. So, so I’m not a happy person sometimes with that and, you know, sometimes I don’t want to make an appointment with the doctors because they never have enough time for you and you know.
Well I think the GP who actually was looking after this, offering me these various medications he, he tries you know, reasonably well, he actually contacted you and to me and brought us together. But I always feel that they just don’t have enough time, you know and he is just. He just sort of says things very quickly and you know you just sort of feel right, you know, I was allocated 10 minutes, right time is up. And then you just go. And I don’t, don’t feel happy about these GPs to tell you the truth at all. I’m sorry to say but I don’t. I liked the ones in [city area] where you could a little bit talk a little bit more to people. And but I mean this is a common complaint. I mean that’s the kind of world we live in at the moment. This NHS has its problems. I fully understand that and but you know, as patients we also need a bit of help and a little bit more of time or, you know, so that’s why I sort of tend not to go now because you know I just feel that, you know, you’re kind of put off fairly quickly basically.
And also it really annoys me that you know you have to wait sometimes two weeks to see the same doctor who for example this doctor who, you know if I want to see him I might have to wait two weeks before I get an appointment with him.
As a result, a few people paid to see a consultant privately. Jenny wanted to discuss her medication and to get advice about her neck problems and Linda also wanted to talk about her medication and to get overall advice. Linda described her GP as ‘very nice’ but both Linda and Jenny felt they needed the chance to be able to discuss their osteoporosis in more detail with a health professional.
Divorced, two teenage sons; recently completed an MA in Arts, lawyer by profession. Chris says that her diagnosis enabled her to reassess her personal and professional life.
Well, from my own experience, and I can only speak for myself, first of all to be told that nothing can be done was not good enough. It really was just not good enough. And I was lucky in the sense that I could pay to go and see a consultant to clarify and get a second opinion. Perhaps I could have got a second opinion on the NHS, but they seemed to be totally inundated, didn’t seem to be coping that well. And also we need a far greater explanation about what the side effects are with regard to the drugs, what we should expect in the future. And just being even given relevant websites to look up to get a greater understanding of what the disease means and the effects on one’s life.
So those are your needs in terms of information and advice?
Yes, well, I think I was, I was very unfortunate in that I got told that nothing could be done because I was of a certain age. That’s unbelievable.
How old were you?
I was 45.
Unbelievable, isn’t it? I mean that’s totally ignorant. I mean I don’t know where she trained or whether she was having a bad day or what.
Well, I think I’d like, I’d have liked a lot more information about first of all whether my ankle was osteop-, affected by osteoporosis and what other parts of my body are affected. I also found out, I went one day to the doctor, and I’ve realised my fingers, just these two fingers, there’s, there’s some sort of bending and there’s a sort of lump on them on, on both sides, just beginning. And I went to the doctor’s and they said, “Oh, that’s osteoarthritis. That’s an element of your whole condition.” Why didn’t they tell me that this is going to happen? I mean why wasn’t I informed of the, what other things I could get as a result of the osteoporosis? Totally uninformed about so much. And maybe I have, should have been more proactive, but no one told me anything about what other things could happen to me as a result of this osteoporosis. I knew about fractures, but I didn’t know about anything else.
How did you feel about that?
I was pissed off, to put it bluntly. I was fed up about it. And it was a sort of a, “By the way” thing, you know. There was no sort of care really, I don’t think. You know, there was nothing. Just, “Oh, that’s by, by, you know, side effect. Goodbye”.
Age at interview:
Age at diagnosis:
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.
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.
Age at interview:
Age at diagnosis:
Clare is a physiotherapist and since diagnosis decided to work part-time. She is determined to exercise everyday and makes sure she keeps a high calcium intake.
I can’t understand why I’m not taking vitamin D in with the calcium and the alendronic acid. I would very much like to know the physics or the chemistry of what happens with alendronic acid when you take it. And why you have to take the calcium. That I haven’t really found out from anywhere.
And if I could find somebody who could tell I’d be really grateful. And the other thing is, I wondered whether there was a specialist who specialises is osteoporosis so that one could go and just have one chat to ask all these questions.
At the hospital?
So you would like to see a specialist?
I would, I think. I would like to have one private appointment with him so he wouldn’t be hurried, he could tell, answer all my questions and tell me more as well. Not just the good side, the down side and everything about it. So then I’m prepared for whatever might happen. Because I’ve had patients who’ve had osteoporosis, you know, a lot of them. And as they get into 80s and their vertebrae concertina, they’re in agony. Now whether the alendronic acid prevents this or whether that is what is ahead, I’d really like to know.
Knowledge of osteoporosis in primary care
Some people diagnosed many years ago thought that knowledge of osteoporosis in primary care has improved. When they were diagnosed, they said their GP had preconceived ideas or little knowledge of the condition. Rose was diagnosed in 1989 and said that her GP, dismissed the idea of her having osteoporosis because she wasn’t old enough, that only women aged seventy and over developed the condition. The response of Pat’s doctor following her diagnosis was that ‘there was nothing they could do for her’. All these women became actively involved in national and local support groups and worked to raise knowledge and awareness of osteoporosis amongst health professionals and the public (see also Osteoporosis organisations and local support groups).
Nowadays there is a much great awareness amongst most primary health care professionals. However, some younger adults said that they still encountered health professionals who seemed to believe that osteoporosis is an older person’s disease. Robert thinks that as more young adults are getting the condition there is a need for more preventative work to be done.
Margery is married and has two adult children. She is a retired college lecturer. She served as chairman of a local group in Scotland for nine years and a trustee of NOS for five years.
My doctor said he didn’t even know anything about it. Bearing in mind we are talking something like fourteen years ago when the knowledge of osteoporosis in general practice was nothing like what it is now.
My own GP, who has now retired, had a tremendous change in attitude, he called me, his pioneer, because I almost pushed him into taking notice of osteoporosis and he became very enthusiastic about sending people for DXA’s. I don’t take the full credit for that. I think this was a trend that was happening anyway, but it was encouraging to see how much more seriously he took it and how he was prepared to look at new treatments. It may have helped that his own mother in law was diagnosed with it. And so consequently his wife may inherit this tendency, but I have seen a big, big improvement.
Age at interview:
Age at diagnosis:
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.
That’s another thing I would like is a lot more direction as to what I should be doing and I think my GP should be doing that. I just this question here. If you can’t run are you how much benefit are you getting from walking? And should you stop calcium? I don’t know. You know, I have no cardiac risk factors so is it more important to stay on the calcium to protect myself against osteoporosis or is it more important that I’m likely to have some cardiac problem. I don’t even know.
You know, I think the GP should be telling me that. And I don’t and they I don’t think they take the initiative to say those things even if you go for a check-up which is very hard to get them to. I mean you have to go with knee pain or you have to go with, you know I don’t know maybe twelve drugs or can’t sleep because I’ve got hip pain [laughs]. That get their attention but they don’t address your overall health so you don’t get patient education that you should I think. And I don’t think and the nurses don’t do it either unless it’s something very specific if you ask them, ‘Can you help me look at my coeliac disease?’ Then they’re its they’re very willing and they’ll they don’t know everything but they know a lot and they will help. But there’s no holistic view of patient health I feel.
Age at interview:
Age at diagnosis:
Jane is a university lecturer and lives with her partner and their son. Both her maternal grand-mother and her mother have osteoporosis. Jane feels let down by the healthcare system.
And so even to the level where I’d been diagnosed with the osteoporosis, you even still have to sit in GP’s surgeries when it involved my dad and my mum having to, you know, put me in a car and drag me there and look after a baby at the same time. And being told when I’m linking the symptoms together to doctors, that I’m told, that’s it, you, that’s enough, no more now today, and just told to go away. When I’m linking together the fact that you’ve given me Calcichew and my pooh is now white, which means, and I’m covered in, because you’re also, with coeliac you get, you can get a dermatitis herpetiformis and I was covered in them. And so there was no, nothing creative went on at all.
And in my head, because I am creative, I knew that all these things were connected. But then I think I realised that I was just not important, that you’re just this person who’s sitting there going, you know, maw, maw, maw, maw, these are my symptoms. And I suppose GPs and doctors hear it all the time. But what it’s left me with is being I don’t trust them and I can’t communicate with them any more.
Do you feel strongly about it?
Yeah, I think it’s all, it seems to be that it’s altered my life now. As I, even badly, when I meet a friend or one of my son’s friends who’s a GP, I can’t talk to them. I just can’t have that relationship with them because I know how they, kind of how the brain thinks, there’s a very logical, A + B + C, whereas life really doesn’t, necessarily go that way. And so it, you know, has had a detrimental affect on my being able to ask for help from a GP surgery. Because when I did think that things got bad GPs would be there, and consultants and stuff, they’re not really. But I hope they are if like my son’s ever ill. Then I hope that they, it will, they all work fantastically. But with something like osteoporosis it’s so, so meaningless and boring and not life threatening that I think it’s, it has it’s backstage somewhere.
That’s you view?
That’s how you think they look at it?
It’s an old people’s disease. It’s just like, there was something on the radio, only the other day about the fact because women are living longer then they’re, they’re more at risk of their bones thinning than at risk of not taking HRT and getting breast cancer. And so it’s told, you know, it’s an old people’s disease and so it’s put on the thing that you just naturally get when you’re old. And so I’m 42 now, I was 36 then, and I knew I’d become old.
Consultant and hospital outpatient clinics
Several of the people we talked to were under the care of a consultant rheumatologist or metabolic bone specialist and attended a hospital outpatient clinic on a regular basis. Many felt that their care had vastly improved since seeing a consultant and described them as competent, thorough and able to explain things in an easy to understand manner. Also they felt reassured by their consultant’s willingness to talk to them about medication and treatment options. Ann described the care she received from her consultant’s team as ‘second to none’. Robert said that he has developed a better and more personal relationship with his consultant. He finds it easy to talk to him about his emotions and problems to do with family and relationships. He describes him more ‘like a friend’.
Married with six grown up children, worked part-time as a domestic but took early retirement due to ill health. Two of her daughters have also been diagnosed with the condition.
I didn’t know anything about it at all. I. He just. Because first of all the doctor said to me, ‘I’m going to refer you because,’ he said, ‘I think your bones are crumbling’. That’s what he said. He didn’t say it was osteoporosis. He said, ‘I think your bones are crumbling’. So this is when I was referred then to this hospital.
Ok to see the consultant?
To see the consultant which I, you know, I did. And he chatted with me and then he said, he gave me an appointment to go back again to have the bone scan.
The second time I went to see him [consultant] he said to me, ‘You’ve got osteoporosis which is deterioration of the, the bones through lack of calcium’. So he said, ‘I want to put you on this weekly tablet to try and build your bones back up again’. Which obviously the bone tablet wasn’t strong enough because my, they’d gone too far. You know, they were so thin but this is how I kept getting fractures. And so then of course, after a. It must have been going on for a year I would imagine. He said. I had a letter to say he would like me in the hospital for ten days, so ten days like a pain clinic. And he said, ‘I will try you on these various medications to see which suits you best. Which works with you, on you.’ But none of them did because I kept getting a fracture. I’d only have to bend down and I’d get a fracture. My bones were so thin. And then it must have been three or four months later he said, ‘I would like to try and get this Forsteo’. He did say the name.
He said, ‘I’d like to get this funding for you for this drug if I possibly can because,’ he said, ‘I think that is the only treatment what would possibly work with you.’
So that’s when they referred me to. And that must be what, five or six years ago wasn’t it [husband]. Five or six years ago that was.
So now you are under the care of the consultant?
I’m under the care of Dr [name].
Son' Since my mother has been under the care of the consultant we saw such a rapid change in my mother. She went from a frail, looking old lady to who she is now. I think if the doctor’s had diagnosed her earlier, the GPs I don’t think my mother would need to have suffered the pain that she had done. And if they’d sent her for the x-rays or a bone test earlier it would have saved my mother a lot of anguish.
And the family. Since she’s been under the consultant in the [name] hospital in [city] he’s just turned my mother around.
Age at interview:
Age at diagnosis:
Married, two daughters; early retirement due to osteoporosis. Works as a volunteer for the National Osteoporosis Society. He thinks it is important to raise awareness about osteoporosis in men.
The consultant, the metabolic bone specialist I see is. He’s absolutely brilliant and we’ve sort of discussed all the avenues if you like. He’s become quite a friend as well because he... We don’t just discuss the osteoporosis but we discuss my pain and all the things that go with it. I think he understands that osteoporosis alone isn’t. You know, once you have osteoporosis it is the trigger for other things. It’s been suggested that it’s unwise. I’ve had a second opinion on the surgery that, that you know it would just be too dangerous to operate again to put this right. So at best I live on painkillers and that’s basically my future I suppose is living on morphine and that’s what it’s left me with really.
The osteoporosis is under control. I had a DXA scan a few months ago and I’m waiting for the results of it but it. Every year they’ve been showing steadily, you know, that it is under control. So the treatments for osteoporosis are working. It’s the after. It’s what the damage the osteoporosis has done is what I have to live with now.
I mean the good examples are really easy when you consider the metabolic bone specialist I see. As soon as I started seeing that person then all of a sudden the picture became clear. It was instantly identified that it was spinal osteoporosis. It was explained to me clearly. I understood the condition. I didn’t need to ask too many questions. I was, you know, I was given enough information to digest and where I could get even more information. And that was a good. You know he was a, he was brilliant. He had a brilliant way of describing things. And that was the one extreme.
And then there. You know they, then you take the other extreme where, where your own GP doesn’t really understand about osteoporosis and still calls it brittle bone disease when it’s nothing like brittle bone disease. And you know they just. And they’ve got, they’ve probably something they touched on but don’t really understand. You know and they sort of start quoting things that are sort of 20 years old. You know and talk about HRT and things that we haven’t talked about for 20 years.
And also they, you know they, the bone, the orthopaedic surgeons that I’ve met you know there’s two bad examples in the beginning where they, you know, they didn’t really talk about osteoporosis whatsoever. You know didn’t even mention osteoporosis and I find that really amazing, you know that. But I think once I was in front of the metabolic bone specialist then it did. It immediately, you know, we knew where we were going. We knew what we were doing and as a patient that makes life a lot easier. You know once it’s diagnosed and you have a diagnosis then you can identify and you can go away and learn about the illness yourself then.
As I say, the only thing I can say is it’s still staggers me that, you know, when I was diagnosed with osteoporosis that the amount of ignorance, you know, in the medical profession. It’s still there. It’s still prevalent today really that, you know, that people have this perception of osteoporosis that, you know, it, they’ve got a preconceived idea it only affects 75-year-old people. You have to be a female and you have a hump on your back. That’s osteoporosis. It doesn’t affect anybody younger than 75. It certainly doesn’t affect men. That is the conceived idea, you know, and it’s a steep learning curve. It’s going to take a long time to change people’s mind set. You know hopefully we will achieve that. But, you know, I feel as a patient it’s an uphill battle you know that the ignorance is still out there.
But not everyone’s experience had been positive. Pat had a poor relationship with her former consultant. She found him rude and arrogant and asked her GP to refer her to another consultant. Susannah felt the doctors had been insensitive at her hospital outpatient appointment but she didn’t say anything at the time because she didn’t want to make herself unpopular.
Pat is married, a retired nurse and has three adult sons. Pat has been very active on her local support group and has campaigned to change attitudes about osteoporosis and improve prevention.
I was taken to see the consultant, put up on to the couch, no blanket. And in that room there was the consultant, the registrar, the houseman, the occupational therapist, the physiotherapist and the student nurses. Now this man came to examine me, had my nightie up round my neck, no curtain round the bed and no blanket. And I just looked up at him and said, “Whatever happened to patient dignity?” And from then on, oh, he was nasty to me, he really was.
So I said to my GP, “I’m sorry, but I want to change from that man.” So he said, “That’s your choice. Who do you want to see?” So I named this particular consultant at another hospital. And he said, “Well, you’ll have to go privately.” So I said, “I understand that, I realise.” So we made an appointment. I went through to see this other doctor and, who wrote back to my, who was, to be quite honest, quite appalled at my drug regime. He changed everything. Couldn’t understand why I was taking that, why I was, “What are you taking that for? You shouldn’t be on that. You should be on this.” And to be quite honest within two months of seeing that consultant I was a different person.
What did you have to pay to go and see him?
When I saw the original rheumatologist it cost me £70. When I saw this rheumatologist it cost me £70, but there was nearly ten years’ difference. And that new consultant has made such a difference to me. I am so much better.
Yes. But after I’d seen him initially privately, he wrote to my GP. And he wrote to my GP and said, “Yes, I know Pat and I’ve decided that I will see her on the NHS.” So I go now and see him through the NHS. But, as I say, he, everybody will tell you what a difference there is with me. There’s a lot of difference
And you get along?
We get on fine, yes. I mean he calls me by my Christian name, like my GP does. He calls me Pat.
How is your relationship with your GP?
Oh, great. I can ask him anything. I’ve got him on to the osteoporosis road. I take all my information I get from the NOS down to him. Get them on. Because, as I say, the, it’s only just in this last year that osteoporosis has come to the fore in [city]. Or is coming to the fore, let’s put it that way. We’re beginning to get somewhere. That’s not bad after fourteen years of, of fighting. We’re getting there.
We, yes, we’re changing attitudes. We’re getting the G, the, the GPs round and the hospital consultants round to realising that, “I’m sorry, but osteoporosis does exist. It’s not just an old ladies’ complaint.” I mean when you think 1 in 2 women, 1 in 5 men. And what does it cost? £1.5 billion a year in fractures.
You are working or campaigning for more preventative work?
Exactly, yes. Early diagnosis.
Age at interview:
Age at diagnosis:
Susannah is a retired teacher; does voluntary work with homeless people and continues doing further studies. She practices Pilates and Chi Kung exercises regularly.
And then what angers me very much if I’d been referred and then they have a whole lot of students there at the [name] and the doctors when they want you to bend forward. They want you to bend this side. They want you to bend to that side. They want you to bend back. Fine. But they don’t tell you to do it. They shove you and you immediately set up a resistance because for one thing your bones are fragile. And if they could just speak, they can speak English, and if. I feel like telling them this. If they could just ask me and tell me, I would bend how they wanted but they have to shove you and do it. And it isn’t good because you’re resisting, you’re probably not going as far as you could. That really angers me. And I think that’s very insensitive. It’s an invasion. You know just pushing people about like that. But these are your top consultant people. You’ve got students there as well.
Tell people what you’re doing before you do it. You treat them with normal respect. I wouldn’t dream of treating a child the way they treat you. And if you want people to do something, well they could ask me. Can you bend sideways, to your left side? Can you bend forward? How far can you bend? And they might want to ask you can you bend more. They can ask you whatever questions they like or ask you to do whatever they want you to do and you are a normal human being you’ll tell them if you can do it or not. But as for putting their hands on you and shoving you which is what they do without even asking you, it just infuriates me. I don’t think I’d let anybody do that again. I mean I’d speak to them and tell them.
But then you’re going to make yourself very unpopular and they’re going to write, they’re going to say this is a difficult woman when they write to your doctors and so on. There shouldn’t be personal comments on doctor’s letters to your GPs.
So that would be your concern?
Well yes they could describe you as a difficult woman or unpleasant, But no I wouldn’t let anybody shove me about again.
Only Noreen said that she had regular, ongoing contact with an osteoporosis specialist nurse. Noreen felt confident in the nurse who encouraged her to phone whenever she needed to. Many of the people we talked to said they would like the opportunity to talk to a specialist nurse.
Widow, two children, lives on her own in a small rural community. She enjoys the support of neighbours and friends. Noreen recommends Kyphoplasty, it has reduced her level of pain.
And how often do you go and see the consultant at the hospital?
Well I haven’t got another appointment for him, but I could see him, in fact, he’s retired which I’m really sorry about that, but there is, you know, another one, but I do see my osteoporosis nurse usually on the ward every three months, and she really knows, I mean my, the consultant said when the osteoporosis nurse was in the room and she was talking to me, and he looked at me and said, “She knows more than me.” [laughs]. So they certainly give you confidence. They really are good.
Can you tell me more about it?
My first appointment there, it was really very good. I didn’t have to wait too long for it, and my osteo nurse was, she came out for me, filled a little form in to let them know what I was taking and then she was in the room, and he introduced himself, in his shirt sleeves, he was really lovely, and then I explained to him, and then he looked on the screen, and he said, “Well look, that’s your bone. Its broken.” I think before that he said, “Stand up and show me where the pain is.” And the, the nurse said to me, and they looked at each other, and they said, that I was a textbook case. And she said, “Is it agony like, when you’re like bending over the bench to make something. You know, over the ironing board.” And I had been afraid to tell people that, because I thought they’d think, for goodness sake, you know, little jobs like that, what’s she moaning about? But that is when you just do that little bend, you know, the nerve endings were going mad.
And so, we talked about that and then he explained about, I mean he didn’t know an awful lot about kyphoplasty either really, so he would like to refer me, if that was all right and I said, “Yes.” And then the osteo nurse took me into her room. I said goodbye to him, and then I went into there and then she went through, and she gave me lots of leaflets, explained them to me. And was just wonderful really.