Interview 04

Age at interview: 53

Age at diagnosis: 30

Brief Outline:

Diagnosed '79 with rapid onset after glandular fever. Various foot surgery undergone and hand surgery planned. Symptom relief from physio/ hydrotherapy & some complementary therapies/diets. Currently Coproxamol, Methotrexate, folic acid & occasional NSAID.

Background:

Housewife, divorced with two children born after RA onset. Symptoms subsided during 1st pregnancy, then got worse and no remission in 2nd pregnancy.

Asserts that patients should take an active role in making treatment decisions.

In those days people were given large doses of steroids long term routinely and I knew that's what I didn't want. So I refused steroids and I'm, on reflection I'm very glad that I did because now I don't have all the problems that are associated with people taking steroids over long periods. But I've found over the years that the patient actually has to take an active role in the process of their disease.

You cannot afford to assume that all the health professionals know exactly what they are doing. They may think they know what they are doing but you can ask two different health professionals and you can get a different answer can't you? So I think in a way it's, it's helped me, that I've been a bit of an exceptional kind of patient, I'm not the kind of patient who'll just take whatever I'm given without questioning it. I come from a family of medical people and I want to know what the drugs are, I want to know what the side effects are. So I knew instinctively I didn't want to take steroids.

Describes intense pain - counted the hours between taking the pain killers.

I was taken into hospital for a period as an inpatient and the pain was just extraordinary, it was like burning, it was just so intense and it was the kind of sleep [pain] I couldn't sleep through. I couldn't, I really couldn't ignore it didn't seem to be susceptible to the drugs that they were giving me. They were, they tried anti-inflammatories, non-steroidal anti-inflammatory drugs which well, they appeared to suppress it slightly. Paracetamol appeared to reduce the pain slightly but, but I mean all these drugs only last for a few hours and then you're back to square one. And having, having to count the hours and you know remembering how long ago you last took the dose and watch the clock and still not being on top of the pain.

Has learnt that physiotherapy and hydrotherapy help greatly to keep joints moving.

I can remember times when I couldn't even pick up a teaspoon because it was so painful. The most extraordinary intensity the pain. And all my instincts when I'm in such pain is to stop doing whatever I'm doing and to keep still and to try and nurse the joint but in fact since then, and probably too late for, well definitely too late for quite a lot of my joints I've discovered that really you've got to keep moving. The best way to, to save a joint from complete destruction even when it's inflamed is to keep using it,  physio, physio, physio. I'm a huge great believer in the power of physiotherapy, and  hydrotherapy in particular is what over all these years has had the most beneficial effects for me. Weightless exercise to keep the muscles in good condition and  not put a strain on the joints. So I wish I'd known then what I know now about how to manage the disease, and reduce the impact on joints of long term inflammation. 

I really do, because I think I'd have probably saved a few more of my joints. 

Finds hydrotherapy a great help but would like greater access to it in the NHS.

Over the years as I think I said before, the one thing that I've consistently found to be of great help in terms of actual physical help and morale building as well is physiotherapy and particularly hydrotherapy. And when I was initially diagnosed I was brought in for hydrotherapy twice a week for 12 weeks and within the first month I felt like a different person and I was really starting to get back on top of the disease. So by the time I 'd finished that course of treatment I really had improved and I could cope a lot better with my disease.

But the constraints of the NHS have now meant that I am consistently refused hydrotherapy. I have to, I've had to badger and make myself into a nuisance to get hydrotherapy. And I could easily have been put off completely. Different doctors have said, said different things.

One doctor at the rheumatology clinic has said look you must have this, you must come twice a year, spring and autumn, you must come for a course of hydrotherapy, to keep you, keep you moving and yet a year later, I can go to the rheumatology clinic and see a different registrar and they'll look, they'll look at me as if I'm asking for the moon.

And it's makes me sick to be quite honest, that something that any sensible mind, any sensible brain could see is of great benefit to somebody whose joints are poorly to exercise and keep fit and strong in water, in warm water, is denied access to it. I now have to go to a self-management group at a different hospital where I am allowed access to a hydrotherapy pool, once a week, and but I have to pay to go to that session once a week, and then I have a 50 mile round trip to drive there and back .

This week I've seen, I've had a complete physio [cough] excuse me, physiotherapy review asked for by my rheumatology professor and the physiotherapist has referred me for another course of hydrotherapy so starting next week I will be having two sessions of hydro, one with a physiotherapist and one on my own, every week. So for six weeks, because they will only give a six week course, for six weeks I will be in the water in the hydro pool twice a week, for a little while. So I'll start to improve. 

After several operations on her feet, which she was inadequately informed about, she still has...

Well the first was to remove joints at the base of my toes, on a, and I'd thought it was just to remove the lumps that were making it uncomfortable to walk on. But this was case in point of an arrogant uncommunicative surgeon, who said 'Yes we can sort that out for you', and with hindsight I should have said 'And what precisely are you planning to do Mr Dah-di-dah?' and it was only when I came round from the anaesthetic and the following day sneaked a look at my X-rays that I found he had just removed all the joints, with two cuts right across the base of the toes and right across my feet. 

So all the joints had gone and effectively from having size eight feet I then had size seven feet. And pins sticking down, up  from out of the end of the toes up into the feet and my toes in, at odd angles. That was the most shocking experience. And the next time he came round on the ward I hid under the bed clothes, so I couldn't even face I had, I had no idea what I could say, I was so shocked and angry. Then the next operation was to put some plastic joints in the big toes to try and improve my walking. 

But it was found the year after they were put in that those particular joints didn't work very well. And they didn't work very well, so the operation last October was to remove those plastic joints and I remember going to the pre-admission clinic and asking  the registrar and the SHO who were there about the experience of the consultant surgeon who was going to be operating on my feet having been through surgery twice on my feet, it was dreadful, and I didn't want to be having to go through it again. So I was really keen to make sure that I asked all the questions this time. 

The consultant couldn't be there that day. But the registrar and the SHO were there and I said I wanted to know about his CV, I wanted to know his success rate, I wanted to know where he had got his experience. I needed to be reassured that he knew exactly what he was doing. And I said because I don't want anyone else operating on my feet, and it was only six months after the operation that I discovered he had let the registrar operate on my right foot while he operated on my left foot. And my right foot isn't as good as it ought to be.

So I'm very angry, I'm very angry, I find it very frustrating that patients aren't considered and cared for in a thorough and professional manner. And when the consultant owned up to having let the registrar do my right foot he looked sheepish and he kind of did, he did this kind of gesture. He knew he shouldn't have done it. Because he could see the right foot wasn't as good as the left foot. And that the problem the right foot has left me with has meant that it's aggravating  incorrect walking and is having knock on effects over the rest of my body.

So I'm now getting pains in joints that I didn't have before. My left hip is now stiffening up and very sore and I'm walking with a hobble. The week before I had this last operation last October I took my dog for a walk  in the local woods and I walked on soft going because it's beech woods, I walked a good mile. I haven't taken my dog for a walk since the op. Because I can't do it. So I'm now looking at even more surgery on my feet.

Even though complementary therapies helped her, she has given them up because they cost too much.

So I have tried acupuncture which seems to help for a while but the problem with the complementary therapies is that I have to pay for them myself. But the ones that I found beneficial I had to stop using because I couldn't afford to keep up with them. Despite the fact the even the consultant rheumatologist, the professor of rheumatology at the hospital that I was at, his father was a renowned herbalist and swore by herbal medicines and he approved of my interest in complementary medicines, in particular in, particularly in herbal medicines, but I can't afford it. I can't afford it, it costs too much.

Swimming helps her physically and psychologically and she enjoys special sessions in a hydro pool...

So you continue to do physio exercises when you are at home?

I try, but if I did all the exercises every day I wouldn't do anything else, because my disease is in every joint in my body. And  there aren't enough hours in the day to do all the exercises. And with the best will in the world, this level of ongoing grinding pain de-motivates you, it's depressing, you don't feel like getting up and doing your exercises. 

This is why the, the, the focus of having a session in a hydro pool means that two or three times a week I know that I'm going to be exercising all of my muscles, And it's also pleasurable. So it helps psychologically as well as physically. And I think that also having a relationship with a particular physiotherapist, it, it would be much more encouraging than seeing the clinic once every six months and then being sent away to get on with it. 

I mean we can still do the swimming but I have to go to a sheltered disabled session, I can't go to a normal swimming session because people in a normal general swimming session don't give each other space I need to go to a sheltered session where people give each other plenty of room where I know I'm not going to have somebody heading straight for me or jumping in right next to me. 

She would have liked to have been an artist but didn't have the physical strength to make it her...

It's not natural for me to be this inactive. I've, I was always very physical and sporty at school and in my youth and It feels as though this is a second-class kind of life, it's not really how I want to live and how I ever envisaged my life. I'm also an artist and would have liked to have made art my profession and my life, but I can't do everything, I've had to bring up my children and I haven't had the physical strength and energy to set myself up with a studio and work as an artist, because I can't lift things. I can't move things, I can't pick up a box of books or move an easel or  you know, or organise things in a physical way without help. 

She has tried many food supplements but always tells her doctors exactly what she is taking.

Yes I've tried lots of different complementary things. In terms of supplements I've tried almost everything that anyone has ever said would help arthritis. I mean at the moment I take glucosamine sulphate and I take Osteocare which is a calcium magnesium supplement to help prevent osteoporosis. And evening primrose oil, those are the ones I take most of the time. I take gingko biloba as well and ginseng, but that's to help me brain rather than my joints [laughs].

You obviously feel they have, the others have an effect?

I don't really know. I find it very hard to tell with this disease because it doesn't follow a set pattern. The only thing that's guaranteed to make me feel better is to go on holidays somewhere warm and dry and sunny and swim in the sea you know its... I think a lot of rheumatic pain can be related to this damp, dreary climate that we have here and I don't like the cold. Yes, so it's very difficult to tell, for me to tell whether somethings actually having a, a dramatic effect.

Did you find any of the things that you took had a bad effect?

No, because I've always been very careful not to just pop a pill without considering and I considering what I'm taking and also I've made a point of telling my GP and or the rheumatology clinic exactly what I'm taking, I'm a great believer in everyone knowing what, what I'm doing. So no I don't think I ever had any negative side effects.

She finds Incapacity Benefit invaluable and wishes she had known about it earlier.

Well I do have a home help now on weekday mornings, through social services. For years nobody even told me I could get incapacity benefit. We were struggling so hard. Nobody had told me, not my GP, not the health professionals at the hospital, nurses, social workers, nobody, that I could get state benefits because I wasn't able to work, I was so poorly. So I'd had the disease for about four or five years before I filled in the forms and started getting benefit. But it was a friend who was a health visitor who asked me one day, 'Are you getting incapacity benefit?' and no I wasn't 'cos I didn't even know about it. And the help I have in the house now, that has been a real lifeline. 

She felt self-conscious about her body and suggested that the psychological aspect of the disease...

I mean, maybe, one aspect, of the disease and the treatment of it that is really not given any attention at all is the psychological and the emotional effect that having this disease has. You need a lot of moral support, I mean maybe that can be achieved through self help, help groups or social groups, who are people who have diseases like this, I don't know but it is demoralising. I mean apart from the way I look, and feel self conscious about and the doctor says' 'You shouldn't feel like that' but I do. The fact is I do, I had a normal strong fit OK body and if I catch sight of myself in a mirror or a shop window and see the stooped shuffling individual I think 'Oh God. Do I really look that?' It's demoralising, it really is and it's some, an aspect of the disease, the psychological effect of it that isn't given any space at all.

The future frightens her because she thinks the disease will get worse.

How do you think your rheumatoid arthritis will affect you in the own future?

Oh, that's the most terrifying thought. That's the thought that really depresses me because it's progressive, degenerative, it ain't getting better, it's only getting worse. The best I can do is to try and not let it get any worse. Well there's a limit to how much I can do. The disease itself will progress and the best I can do is to keep my body as fit as possible and take care of myself, rest enough, exercise enough back to the hydrotherapy you see. 

And the fact that this year I've had to resort to a wheelchair to go round exhibitions and only then you know, with my daughter pushing, or someone, well I've not actually ever asked anyone else to do it, That's quite a big step for me psychologically, and it feels as though it's, it's, that's the way it's going. I'm getting less and less able to do the things I not only that I want to do but need to do. So yes the future is a frightening place for me.

Patients should be involved in treatment decisions at every stage and continuity of care is...

But what I would ask an expert would be, 'Why don't you involve patients in your decision making at every stage? Why don't you ask patients what they want and what they feel they need because the patient is the expert in their own disease?' Because absolutely every patient is a complete individual and there are no two patients that match each other completely. And I think doctors could learn a huge amount by listening more to patients, mmm. 

I find that, quite often problems arise because um there's poor continuity I've had this disease now for 22 plus years and in that time there has been an incredible turnover over all these health professionals, the only one who I remember from back then is, is my then registrar now Prof. of rheumatology so you know he, he was able to act recently upon information that he's accumulated from knowing me all those years, well what better way is there of  serving a patients than by knowing them over a long period of time? And now that has to be true of every health professional now if you see a different occupational therapist every time you go, it's exhausting, exasperating. 

I feel almost like being rude, it's so exasperating to explain to, you know, a 19 year old who's never met me before. But of course it's not her fault. She's just going through things I've seen a hundred times before and they're not telling me anything new, not asking me anything new. Nurses  in hospitals have been sometimes wonderful, sometimes abominable and all stations in between.