10 Genetics counsellor

As described in Chapter 10, the genetics counsellor has a vital role to support the child and family in understanding the diagnosis and what it means to have the condition. In particular, the role ensures that:

  • Decision making is informed
  • People have considered the implications of their decision
  • People can adapt to the outcomes of their decision

The role is complex and as you can see below, a typical day can involve many different issues and situations that need to be facilitated and supported.

A day in the life of Marjie Miles, Genetic Counsellor, Nottingham City Hospital Campus NUH

What route did you take into your current role?

I’ve had a varied career, to say the least. Having started out as a Geologist, I then trained as a nurse, worked in gynae, completed my midwifery training and worked in a Neonatal Intensive Care Unit. I have worked on projects with pregnant substance users and in the precursor to Sure Start centres. In addition, I have been an advisor in genetics for families with Neurofibromatosis Type 1 and 2 in the East Midlands, and a trainer within HIV and Sexual Health. I have a Master’s degree in Bioethics and a counselling qualification. Most of my present work concerns cancer genetics.

What about the rest of your team?

About half of the genetic counsellors have a nursing/midwifery/health visiting background in a senior role and a relevant Master’s degree. The other GCs have a science degree and a Masters in Genetic Counselling.

Could you tell me what a typical day is like for you?

Although Nottingham is a regional hub for a large geographical area covering a population of 2.3 million, we run clinics in Nottinghamshire, Lincolnshire and Derbyshire.

Our caseloads are not speciality related but a complex case would be dealt with by a senior genetics counsellor.

Referrals are triaged and there is always a doctor and a senior genetic counsellor on call during office hours.

Our clinic coordinators will schedule appointments. Senior genetic counsellors can be autonomous, ordering genetic testing and arranging follow up consultations and paperwork.

08.30: I’m a mentor to a new staff member. Quick meeting to resolve queries from yesterday and offer support about a new case. Check and respond to emails.

09:00: Clinic appointments to see new patients. Time is spent asking about general health, taking a family history, referring for screening investigations and arranging genetic testing. Advice also given for close family members.

12:00: Telephone call from a GP requesting advice about making a referral to us. Check emails.

12:30 Meeting with Consultant Geneticist to discuss results and complex case.

13.00 Monthly Journal Club with colleagues. Presenting a paper.

14.00 Call from a midwife about a pregnant woman who needs seeing quickly. These appointments can be given within 2–3 days.

15.00 Co-counsel obstetric clinic case with consultant.

16.00 Ring patients with results and then follow up with GP.

17.00 Check emails. Organise material for a teaching session, and review Trust policies prior to departmental meeting tomorrow.

Current drivers

Our referral rate is rising every year. Ten years ago we had 7 genetic counsellors and now we have 14, a research nurse and a genetic information nurse. Much more public awareness and celebrity cases such as Angelina Jolie’s sometimes trigger queries.

Future changes to the service

There is a move to mainstreaming elements of the genetic service. This means that instead of all families being referred to us prior to genetic testing, pathways of care may now include the ability of other services to order diagnostic genetic testing and then we would see their relatives for predictive testing or advising their screening needs.

What would you like student nurses to take away from their training?

Don’t be afraid to ask questions! We are always happy to be used as a resource for advice or information. Look at all families with a ‘genetic eye’ – are there specific health problems or cancers running through a family? Also understanding that sometimes ‘bad’ news can be ‘good’ news for some people which is not something you always expect as a nurse. Survivor guilt can be very overwhelming and can mean that ‘good’ news can actually have a detrimental effect within a family. Consider genetic counselling as a possible career pathway.