Denise: “Midwives have a unique opportunity to shape a person’s care by taking a detailed family history and responding to it appropriately”
Our Lead Midwife on how her passion for managing a challenging situation inspired her to learn more about genomics and how genomics is vital to achieving the best outcome for people’s pregnancies.
Denise Barnes, Lead Midwife
Denise is part of a multi-disciplinary team leading on a regional project to transform care pathways around fetal medicine to reduce inequity of access to genomic testing.
The team are currently putting the finishing touches to a suite of videos – for colleagues and pregnant women/people and their families – designed to support key-decision touchpoints during the pregnancy care pathway. Read on to find out more and what’s next.
With the many diagnostic tests available, you could say that genomics is already here. Where are you on your genomic journey?
I think we’re all on a learning journey with genomics and there are further advances with genomics all the time. The National Testing Directory has made genomic tests more accessible, but colleagues need to be supported in how to have ‘a genomics conversation’. We’ve been aware of genetics for a long time, but for me genomics is the bigger picture.
At an early stage of my career, I was really interested in antenatal screening, and explaining people’s choices and supporting their decisions in their pregnancies. Then, I found myself supporting the pregnancy of three people who were HIV positive. This was challenging, but very rewarding, when the babies were born HIV negative. This is what changed things for me. I realised that my passion and skill is in supporting families through unexpected news, their options and making decisions that are right for them.
My knowledge around the options and implications of tests during pregnancy, care pathways and key decision-making points grew through subsequent roles. I established a team of specialist midwives supporting people with unexpected scan results and providing them with personalised care to support them through this challenging time. We answered questions, provided support and guided people through their pregnancy journey.
“My vision is to have a network of midwives who can share best practice and overcome challenges together. It’s the midwife who has the relationship to support complex pregnancies, so the people who are doing this well need to bring their knowledge together.”
You mention sharing best practice. How are you helping to do this?
Through the genomics transformation project, we’ve been looking at several areas within the maternity care pathway across Leeds, Newcastle and Sheffield to identify best practice in the application of genomics and drive consistency in the quality of service people receive.
A key output is a series of videos to help colleagues in having a genomics conversation and also videos specifically designed to support pregnant people through their journey. Look out for more on these coming soon.
With this work, it’s been really useful to get inputs from the perspective of other roles within our multi-disciplinary team.
Why should people care about genomics? And, what is the one most important thing we need people to do to help make genomics part of mainstream care?
Genomics increasingly has an important role to play in all areas of the NHS, so it’s worth starting to build your knowledge and understanding now. I’m here to help midwives access resources to become more confident in having conversations about genomics and making appropriate referrals to clinical genetics.
As midwives we have a unique opportunity to shape a person’s care by taking a good family history. This enables us to provide the information that families need to make the right decision for them.
The next step with the transformation programme is for us to do a look at the training needs for midwives when supporting pregnancies with fetal abnormalities, and to develop educational resources focused on these needs.
I will also be looking to set up a network of midwives over the next 12 months, who will be able to use this framework to build on their understanding of genomics and better support families. Please get in touch if you would like to help shape our approach and better embed genomics into the maternity care pathway.
Denise ([email protected])