Why I think patients and doctors should be equal
Diz is happy that change in styles of treatment has allowed her to live a full life despite her ILD and sarcoidosis.
I've had decades of treatment for interstitial lung disease caused by sarcoidosis. Over the years, you start to notice things. Like how much of an effect a doctor’s approach can have.
I’ve come to realise the most important thing is that care should be personal, and centred around the person.
But it wasn't always like this for me.
Sarcoidosis at 20
My sarcoidosis started a very long time ago. It was 1963, and I was 20 and just starting out as a medical student. Suddenly I had painful purple lumps on my legs. They were pretty unsightly - and with it being the 60's and miniskirts being in, wasn’t fun at all!
A few years after the lumps, I started to get breathless. Nobody had the faintest idea what was going on.
But eventually, a consultant from London had a look and thought it was this new-fangled thing called sarcoidosis.
They put me on steroids, and I recovered quickly. And that was my life from then on. Relapses, remissions and treatment. Thankfully, this didn't prevent me from going on to enjoy a successful career as consultant radiologist.
As the years went by, the type of care I received evolved. My first round of treatment was in Glasgow, where I was studying. It was so typical of how medicine was practised in Scotland at the time.
I’d describe it as paternalistic. That’s not to say it was unkind in any sense - quite the reverse really. But it was very parent-child like.
I felt like the doctor found it easier to tell me what to do.
I didn’t feel like an equal partner.
'Pull yourself together'
London was difficult. I lived and worked there for decades, so I had a great deal of treatments. But I also experienced it as a doctor, too!
More often than not, I'd describe the style of care in the 1970s as patrician, like the doctor felt he was more clever than me.
I have a memory from when I was working as a junior hospital doctor.
I became extremely breathless trying to climb some stairs. But instead of giving me support, a consultant physician told me to pull myself together - he prescribed me cough medicine! He said that I was a fit, healthy young woman.
It was a difficult experience. I felt completely crushed.
A few weeks later I moved to a new job in a different hospital. The occupational health physician there requested an x-ray which finally revealed my interstitial lung disease.
Teamwork for the best result
Following my retirement to Warwickshire, a particularly nasty period of breathlessness landed me in a specialist centre. To my relief I found a very different style of treatment. It was personal and centred around me as a patient and a person.
I felt like what I said mattered.
It makes such a huge difference when you feel equal. Like you have control. That feeling of dignity and respect is so empowering.
Putting my doctor’s hat on for a minute, I think that is crucial. It means that you share responsibility with the person you’re treating. When both people work together, we can come to the best outcome.
I think this approach must form the basis of care.
I've seen so many changes over the years, but I'm so happy that advances in treatment have helped me to live a full life.
What we do
One person in five in the UK is affected by lung disease. Millions more are at risk. We’re here for every one of them.