Carolyn lives in North Wales with her husband, 3 children, 6 chickens and dogs. Carolyn walks her dogs along the river Dee to clear her head, unless she is supporting her husband by sailing the North West coast of Wales (mainly groaning over the edge of the boat – “I’m not a good sailor”) or ferrying her children to all their activities.
“No two days are the same”
Carolyn also organises the AGNC conference, attends specialist conferences, gives talks to schools, student nurses (‘how to break bad news’), specialist nurse groups and even Radio Wales on ‘the role of a genetics nurse counsellor’.
Delivering news that will have such an impact on people is an important and difficult part of the job - “the AGNC recommends that all Genetic Counsellors have access to clinical supervision, which has allowed me to feel far safer in myself and as a practitioner.”
Carolyn started her nursing life as a paediatric nurse before moving into health visiting and then seeing an advert for a specialist nurse in genetics and being attracted by the need for ‘superb communication skills’.
Carolyn particularly likes the fact that no two days are the same in genetics. Each person who comes through the door is different and will react differently to the person before them. Genetics involves dealing with the whole family and Carolyn loves using her skills to bring people to a point that they can cope with what is being told to them.
What’s an average day like?
Carolyn works in a suite of offices from Monday to Friday, 0830 to 1730. An average day involves seeing patients in the genetics clinic, to help people deal with having been diagnosed with a genetic condition or those who may be at risk of inheriting a genetic condition.
Pregnant women are frequently referred to the genetic service if a genetic anomaly is suspected or detected - particularly if there is a significant family history. Many children are referred to the service with issues involving developmental delay or they may have a pattern of features which may lead to a diagnosis of a condition. The diagnosis of a genetic condition is usually carried out by the geneticist who will be a trained specialist doctor in medical genetics.
Individuals who wish to pursue presymptomatic testing for a known condition that is ‘running ‘in their family are seen. This is known as predictive testing whereby the individual is not showing any symptoms at present. One such condition is Huntington’s disease. This can take as long as 6 months as it is a process that asks questions of the patients such as “what will you do?” and “what decisions will you need to make?” Many genetic conditions come to the fore when people are thinking about getting married, having children or reaching the sort of age when symptoms start to appear.
A condition like Huntington’s has a 50/50 chance of being passed from parent to child, so there will be a lot of fear/ anticipation surrounding the delivery of a piece of news - that will categorically directly affect the rest of that person’s life and their family’s lives too.
Working as a part of a multi disciplinary team is of immense importance to ensure that the patient’s needs are met. These will vary from screening midwives and obstetricians, to paediatricians, neurologists, GP’s and cardiologists. Depending on the outcome Carolyn needs to collect blood samples, write letters of explanation and refer patients on to relevant specialists as well as support and advice on decisions along the way.
What’s the career path?
If you’re a graduate nurse or midwife, have two years post-registration experience, have completed counselling skills training of at least 90 hours duration and a genetics course of at least 30 hours, you’ll be eligible to apply for a position as a genetic counsellor. When applying for a post in a genetics centre, community experience is helpful, as many genetic counsellors visit families at home. Additional education or experience in the field of genetics is also desirable.
If you’re a graduate of a discipline related to clinical genetics, such as genetics, biology, psychology or sociology, then you could apply to do a Master's degree in genetic counselling. When selecting students for such courses, selectors will usually require evidence of experience of caring work, either paid or voluntary.
What advice would you give someone looking to get into clinical genetics?
“Get yourself a good scientific understanding of genetics. Do a basic foundation course in science and understand what a gene is and what a chromosome is. Do a good basic counselling course and pick up the phone to a genetic counsellor and ask them questions or arrange a visit.
Remember that Genetic Counselling is not the same thing as counselling. It’s about giving complex scientific information in a way that people can understand and deal with. It’s a superb job for people who can communicate well and are interested in science.
You are not treating a condition. You are dealing with a person.”