Análisis de resultados

This case study is based on an interview with a young woman with rheumatoid arthritis. Margaret [not her real name] is 45 years old. She started to experience the symptoms of rheumatoid arthritis when she was 21 years old. At the time she was playing a lot of sport and had just undergone knee surgery. Eight weeks after the surgery her arm and wrist became very swollen and she was in a great deal of pain.

Her GP quickly sent her for blood tests and she was diagnosed with sero-negative rheumatoid arthritis. Margaret was referred to a specialist who started medication but she was not provided with any relief and remained unwell and was unable to manage her own personal care for some time.

Nine years ago Margaret was changed to a biologic medication, which she says has completely changed her life. Margaret she says it took a long time to be prescribed that medication because of the complicated process required for prescribing the drug under current PBS criteria.

The current medication prevents the frequent admissions to hospital she experienced before she started this medication.

I haven’t been back to hospital since I have been on this medication.

Before that there have been times when I have been so bad I have had to be taken to Emergency and they’ve had to admit me because you know it gets into everything. If it gets into your jaw, you can’t eat, and if it is a severe flare up you can’t even breathe properly.

Margaret has been able to continue working as she had very understanding

employers. Currently she runs her own business which gives her more freedom and flexibility but:

[I get] exhausted and tired from dealing with the pain … [however] I really have become a little bit more attuned to my body and my health, so I think I am in a better position now than I ever have been.

Nevertheless Margaret added:

As you get older … you struggle with it more as it impacts on other things. A lot of the times, if something goes wrong the doctors say “oh it’s your arthritis” so there is not the extra assistance and help to get you better again.

The effect of the disease and the medication side effects also affect her work and family life.

Apart from living with the pain and not being as mobile as I would like, it also affects your overall wellness and I am often extremely tired and I can get sick quite easily because of medications that I take to suppress my immune system … and there are also the side effects.

Margaret moved from one state capital to another five years ago:

I had the best specialist, the one that got me on the biologic, she was outstanding, I could see her if I was unwell, I would call her on her mobile and she would organise to see me, she went above and beyond, a really caring specialist.

When Margaret moved, she found she could not get in to see a specialist; they were not taking any patients:

I explained that … what I needed was a specialist to be able to provide me with my medication, because I can’t get it without seeing a specialist

… I ended up ringing the hospital and said if you don’t get me in to see a specialist, … I will be admitting myself.

It took Margaret six weeks to see a specialist who she now sees every six months. However, needing this ongoing level of treatment has cost implications:

It’s a very expensive illness, you’ve got nothing to cover it, nothing for out of pocket expenses … your specialist isn’t covered, you either pay over and above for the GP, you have got to pay for the medication … even for analgesics and things to manage the pain, because you always have a level of pain.

Margaret considers herself to be a lucky person:

My husband and I have been together since before I had my arthritis so he has seen me well, and he has also seen me extremely ill, he has been a fantastic support for all those years.

She also has a 10 year old daughter which was very difficult due to health issues:

They didn’t think that I would be able to have children, so that was a gift but … I was very unwell.

The majority of her support is informal. Margaret recalls when she was living in the UK she had a rheumatology nurse that was at the local hospital clinic:

You could actually get in to see the rheumatology nurse whenever you needed to and she would provide advice, she would help ... Sometimes you just had bad days and you actually need to go and sit down and talk to someone and tell them what is going on … To be able to have

access to a health professional when you need to, is really important ...

I have never known that to be available in Australia – from my personal experience it was the only time I have ever had any kind of support really – very beneficial support outside of the family.

In the future, Margaret wanted a range of allied health or alternative treatments to be more available.

Probably because I’m getting older … things like physio, being able to have a therapeutic massage help me to keep going … For instance I am starting to have problems with my feet … after 24 years of having rheumatoid arthritis.

Margaret has just been provided with a care plan which allows her three visits to a podiatrist and two to a physiotherapist.

If your care plan is divided between two allied health services it’s not usually until your third visit to get treatment or relief ... If you could have five physio visits and five podiatry visits then that might be a bit more worthwhile.

Margaret discussed the importance of raising awareness about the effects of arthritis in the wider community by helping Arthritis Australia change understanding of what arthritis is.

People believe arthritis is an old people’s disease and it’s a very silent disease because you can look at somebody and don’t know they actually have it … It’s also not being treated properly and there is a lot that other people could do if they better understood how the disease

impacts on people’s lives and realised that it’s so widespread and affects so many people … One of the things I’m quite passionate about, is for bureaucrats to understand the importance of preventive health and ongoing health maintenance. If you focus on the overall wellbeing of a patient, it eliminates future costs and trauma which often happens as a result of their health not being appropriately and holistically managed in the first place.

5 How people are affected