“Don’t say you’re ‘just a nurse’ – it’s more than enough”

Of the achievements I’ve been lucky enough to obtain, including a recent European award win for genetic education, becoming a nurse was up there at the top.

On a Sunday afternoon in August 1971 I stepped inside the door of the Nurses’ Home of a hospital in Melbourne, Australia. I was full of excitement at what my nursing training might hold.

Little did I realise how my career would unfold – from care, into genetics, into research – especially as my first afternoon was spent learning how to make a nurse’s cap out of a semi-circle of highly starched linen (I was still struggling with that particular task three years later when I graduated).

Under the hospital-based apprentice model of training, we were an intrinsic part of the hospital workforce and learnt quickly through experience. I loved everything but night duty and after graduation I went on to work as a paediatric nurse, in the operating theatres and then reached my goal of becoming a midwife.

It was as a midwife that I first started to learn about genetics, working in a teaching hospital in charge of a foetal diagnostic unit.

Times were so different – ultrasound scans were a new phenomenon reserved for women with complicated pregnancies, amniocentesis was very risky, and genetic counselling consisted of risk assessment: couples then had a decision to make whether to avoid having children or just take the risk. Genetic testing was limited to chromosome analysis, and all other diagnosis was by clinical examination.

But I was bitten by the genetics bug, and when I moved to the UK – I fell in love with a British man – I responded to an advertisement for a nurse specialist for a new genetics service in Somerset. To my amazement I was given the job, and quickly had to increase my limited knowledge.

I read a lot, but it was working in the clinics with an excellent geneticist that I learnt most – not only about genetics, but how to explain the difficult concepts involved and how to deliver difficult news to families on a daily basis.

That job changed my life. Far from being restless, I found I could never keep up with the new information being generated by medical genetics research.

But it was the contact with families that I found most challenging and I trained in counselling over four years to attain the communication skills I knew I lacked.

From that point, whole new areas of professional development opened up. I started training others in counselling skills and if I have had a mantra, it is that families deserve to be treated by professionals who can communicate sensitively and can use counselling skills therapeutically in this context.

Gradually our ability to offer testing, clinical surveillance and preventive treatments has increased, but at the heart of genetic counselling is still that empathic relationship between patients and professionals.

It was wondering about the value of genetic counselling that started my research career. I did a satisfaction survey of my own patients and quickly realised that the results were virtually worthless: the penny dropped that I needed training to do research.

After a masters degree, I was fortunate to obtain a Department of Health fellowship and my doctoral study was on the value of genetic counselling from the patient’s perspective.

Since then I have had a full second career as a researcher and educator, published 150 research papers, led several international professional organisations, and collaborated with colleagues from dozens of countries. My aim in all of my work has been to improve services for families affected by genetic conditions.

I did not dream on my first day of training that nursing would hold the key to such a wonderful life, but nursing is a career with endless potential. It is possible to specialise or generalise, to work in hospitals or community settings, to work directly with patients or to try and improve care by developing the evidence base for practice.

I am so fortunate to have seen such huge changes in genetic healthcare and to have been part of those changes.

Over many years I have heard colleagues describe themselves as ‘just a nurse’, and it did annoy me. I didn’t think there was any ‘just’ about it. But as I end my career, I realise that if that was all I was, it was more than enough.

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