Denise Barnes, Lead Midwife for NHS North East & Yorkshire Genomic Medicine Service, writes…

Being the midwifery lead of the NEY Fetal Genomics Transformation Project continues to be an amazing experience. It’s changed my ideas about what I was capable of, where I would like to see my career go, and most importantly, had a positive impact upon staff and patients.

Before stepping into the world of Genomics, I’d come from a busy fetal medicine background. Years of hands-on experience had given me a good understanding of what worked well, what not so well (and much that lies in between!).  But I never thought I would have the time, headspace, or resources around me, to explore the system with a view to making positive changes to it.

Being part of this project changed that. Its allowed me to see that I could make a difference to clinical care, but in a different way.

Easier Said Than Done

Whilst a project brief may provide you with an end point – the journey from here to there, may not be quite so obvious. So, as our project team grew, we first spent time working out what was being asked from the project and where we could make a significant difference.

We began by gathering baseline information about what is currently happening at the 3 tertiary centres in NEY, by mapping out the common clinical pathways for referral, attendance, and follow up, in each centre.

I will always have fond memories of sitting at one of the midwife’s kitchen table, drawing out pathways on rolls of paper and post it notes!

The more we investigated, the clearer the way forward became, as we realised where the areas of best practice were happening, and what interventions could be recommended, to improve these pathways. We also started to get creative…

With the support of the GMS Comms team and an external filming company, we were able to produce a range of film and physical educational materials to help support staff increase their awareness of how to provide access to perinatal genomics services.

And for patients, our midwifery experience in fetal medicine inspired the creation of professionally produced videos and printed resources to support families considering prenatal invasive testing.

The response to these videos has been truly amazing. We didn’t realise at the time the ‘reach’ and impact these videos could have. If we had I’m not sure we would’ve done it!

This work also saw us set up and run the inaugural Perinatal Genomic Pathways seminar in York in November 2022. The seminar provided an opportunity for collaborative working as well as giving the team the perfect platform at which to give a first view of the work.

Denise Barnes, Lead Midwife

Denise Barnes, Lead Midwife

The last year has absolutely flown by. And I’ve learnt a lot, but perhaps the most nerve-wracking part for me was developing my presentations skills. Having to present the project findings to colleagues and senior leaders, in such a way that clearly demonstrated the impact our recommendations can have, whilst being acutely aware how busy and stretched our services and teams are, was a challenge. To say the least.

I would still prefer to be doing a chorionic villus sample (CVS) than presenting on Teams!

As a midwife, I am used to ‘just doing it’, however, I have had to learn that we often need a little time to plan things too. This project has given me the experience of working with a team who are not all clinicians, but still equally motivated to support the aims of a project. As a team we provided different approaches and skills that added to the success of the work.

Projects like this can start from a small idea (or frustration😉), but then they grow into a collaborative experience to improve care for pregnant people and their families. You just need to make a start…

The Resources

The Patient Videos & leaflets are to support patients when referred to a fetal medicine unit. The films include information about:

  • Prenatal testing after an unexpected ultrasound finding
  • Prenatal testing following a higher chance screening result
  • Prenatal testing due to family history of a known genetic condition

The staff videos, flashcards & poster are to support health professionals having a genomic related conversation with parents.  They provide support through three scenarios:

  • Previous history of an anomaly (Obstetric history)
  • Family history of a genetic condition (Medical History)
  • How to take a history in a close relative relationship