Pat - Interview 32
Age at interview: 68
Age at diagnosis: 54
Brief Outline: Diagnosed in 1994 after complaining of severe back pain. She is currently on Actonel (risedronate) but was first put on Didronel (etidronate) and then Fosamax once a week. Recent DXA scans revealed that her bone density has greatly improved.
Background: 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.
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In 1993 Pat was diagnosed with septic acute rheumatoid polyarthritis but despite treatment she continued having severe back pain. In 1994 Pat also noticed that she had lost six inches in height and a subsequent x-ray proved that she had three collapsed vertebrae and was told she has osteoporosis. Pat is on treatment for both conditions and has to take around twenty five tablets each day. For her osteoporosis she is currently on Actonel (risedronate) but was first put on Didronel (etidronate) and then Fosamax once a week. Recent DXA scans revealed that her bone density has greatly improved.
After being diagnosed with both conditions Pat went on to spent three years on a wheelchair but was determined to make herself walk again. She says that it took a lot of hard work to succeed. Occasionally she still gets flare-ups due to rheumatoid arthritis. Pat has restrictive mobility and feels that she is currently more affected by arthritis than osteoporosis
During those years when Pat was unable to walk her husband worked full-time and became her main carer. Together they worked out a system that enabled them to cope with the situation. For instance before going to work he would leave everything she needed including her lunch within reach and phoned her at lunchtime to make sure that she was fine. On her part, Pat will prepare the vegetables for their dinner. Pat’s main fear at that time was of falling when no one was around. Social services provided her with part-time home help for two years.
Pat had her first DXA scan four years after her diagnosis in 1998 and since then has had around four scans in total. She has them done privately because none of the NHS hospitals in her city have a bone density scanner. She says that her PCT is only just now acknowledging that ‘there is a problem called osteoporosis’.
Whilst housebound and on a wheelchair, her GP encouraged her to attend a meeting to set up a local branch of the National Osteoporosis Society. Following that first meeting Pat became very involved and served as its chairman for several years but step down due to poor health though she continues to be an active member. For Pat, participation in her local NOS group means company and the possibility to meet and talk to others facing similar challenges and experiences as well as campaigning to raise awareness and improve prevention. Pat also says that over the years the NOS Helpline has helped a great deal. As a trained nurse she had a bit of knowledge about the condition but says that most of her information has comes from her association with the NOS.
Pat had an earlier menopause at the age of thirty-nine but says that before that, she was missing periods since the age of thirty-two. Her mother wasn’t diagnosed with osteoporosis but Pat says that in those days the condition was hardly ever mentioned and people were ‘no aware of something called osteoporosis’.
Pat was involved in successfully campaigning for a DXA scanner which is now available at her...
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I joined the group, which had only been formed not quite a year. And after discussions we decided between us that we would approach [city] Health Authority, as it was then, with a view to us setting up an appeal to purchase a bone density scanner for the hospital. And we were told by somebody in authority, “As there was no cure, what is the point?" And, “Thank you very much, no thank you.” Anyway the [name] Hospital, which was a private hospital in [city] contacted me. They’d heard about this and they would then buy a bone density scanner. So my advice to them was, “Contact the consultants, contact GPs and get their feedback. And if they said, ‘Go for it’ then go for it.” Which they did. And we got the bone density scanner at the [name] and I had my first bone density scan in 1998.
And you were diagnosed in?
And I was diagnosed then, I got to know my T-score and everything, which was four years after the original diagnosis.
No, I didn’t have to pay for that one. But my subsequent scans that I’ve had, I’ve had three, four, I’ve lost count, I have had to pay for. Because it’s only at the moment that the PCT is beginning to come round to that there is a problem called osteoporosis. The consultants in [city] now have been working a new scheme where the patients who go in with fractures are, the elderly patients, are then handed over to the Elderly Care consultants and they follow up the treatment, they put the treatment in line for osteoporosis. And that’s only been going six months.
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.
Pat asked to be referred to a different consultant and she now feels much better.
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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.
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.
Pat now eats more dairy products and grows her own vegetables.
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And what have you changed about your diet?
I eat more dairy products now. I’m not a lover of yogurt but I will eat them. Because I don’t like much milk in my hot drinks. I’ll drink cold milk till it comes out of my ears. But you give me a cup of tea or a cup of coffee, I only like enough milk just to cover the bottom of the cup. Don’t ask me why. It’s just a fad I’ve got. But I always have a milky drink before I go to bed, hot chocolate.
But green vegetables, I mean we’ve always eaten, so it’s nothing new to me, eating this and fruit.
Do you grow your own vegetables …?
If you saw the size of my garden. But we have got a few potatoes in and we’ve got Jack and the Beanstalk. I planted some, got some runner beans and they’re going skywards. And we’ve got a couple of pea plants in and lettuces and mint and parsley and dill and chives, bay. And I’ve got a little greenhouse, it’s only this big, and it’s got tomatoes in. And it’s only 4 foot across. You see, I can’t bend down. [husband] does, [husband] puts the pots on the table and I put the plants in. And then they go down on the floor. And that’s what we do. He’s the labourer and I’m the gardener.
Pat prefers to keep on top of her pain relief so she takes painkillers twice a day in the...
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And what happens when you have pain on your back? What makes it better?
Well, I try and keep on top of the pain relief. I take my two pain-relieving tablets before I go to bed on a night and I take two before I get up on a morning. And then that keeps on top of it. It’s better to do that than to wait until it’s absolutely horrendous and then take them. So I find it easier to keep on top of them.
But apart from the medication, what else do you think helps? Resting?
Resting does, definitely. But I mean if I stand ten minutes, then I know my back’s bad. And once I go and sit down, make myself a drink and sit down, then that eases it a lot. But standing does make it bad, really bad. I can’t stand much.
Well, I’ve just had to literally realise that I can’t do things that I used to do.
Be as active as you possibly can, have a high calcium diet and get in contact with your local...
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Well, if you’re not, haven’t been diagnosed, then try and get a diagnosis as soon as you can. Follow what you’re told, what the GPs or the consultants tell you. Continue with your treatment. Unless you find it’s got a detrimental effect, and then go straight back and get it changed. But follow and do everything that you are told. If you’re complaining of back pains, try and keep on your feet, try and keep ambulant. I didn’t to start with because I wasn’t diagnosed for a long time. But, knowing what I know now, I would have tried to keep ambulant. I possibly wouldn’t have ended up in a wheelchair for the whole time I did. But certainly stick to your treatment. Make sure you have a high calcium diet. That is a must. I don’t care what anybody says. It’s a must. Even if you don’t like broccoli, which I didn’t, I now, I can eat it and enjoy it now. Because it’s such a high calcium content. And that’s what, that’s what I do, try and keep ambulant. Even if I’m only pottering round here, at least I’m doing some weight-bearing exercise, which is so necessary.
Do you have anything else to add that I haven’t asked?
If you have been diagnosed, find out where your local group is of the National Osteoporosis Society. If you’ve any queries, you want to know anything, ring the osteoporosis helpline. It’s been a boon to me, it really has.
After her fracture, Pats husband worked full-time and looked after her at the same time.
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I don’t know what I’d do without him, I really don’t. He’s been brilliant with me, as I say, since 1993. He’s been superb. As I say, I mean when I was ill he used to have to lift me into bed, lift me out of bed, take me to the loo, bring me back, undress me, put me into bed, get me up, dress me, prepare my meals then, luckily I only have cereal for breakfast like, but make me cups of tea and all that sort of thing, make the bed, change the beds.
And were you a good patient?
Yes. No, I was not a bad patient, I was a good patient. No, I think, “No, he’s got enough on.” I mean and all this was while he was working full time.
So how was he coping? Was he coming home at lunchtime and things like that?
No, because he works, is it 12? about 12, 14 miles out of [city] and they only get half an hour at lunch hour, at lunchtime. So he used to bring my breakfast. And then he used to bring a, a flask of water, milk jug, sugar basin, cup, spoon, knife and then he used to do me a box with cream crackers and cheese in for my lunch. So I used to do that, you see. And then I had to wait while he came in at teatime to get a meal between us. He used to get me a meal, you know, get me up out of bed, or get me up before he went out on the morning and I’d potter about in the wheelchair, potter into the kitchen and do the vegetables and that sort of thing.
Did you need help if you wanted to go to the toilet, for instance or?
Well, by then I was getting that I could pull myself up to standing, so I could sit on the loo. You know, over a period of time I just gradually improved, so that I could. Walking was the biggest problem. But if I could pull myself up on the hand basin, then I could, as long as he didn’t put the lid on the toilet I could manage.