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Please meet Anita, our newly appointed Lead Nurse for East GMSA and hear how she aims to work with Nurses across the region to raise awareness and improve equity of access to the genomic medicine service across patient care pathways. (The eagle-eyed among you may have spotted Anita in our banner image above!). | | |
Hi, my name is Anita Murphy, I have taken on the lead nurse role for East GMSA. I have been a nurse for thirty-two years working across secondary, primary and community care. My most recent role was as a Diabetes Specialist Nurse and Genetic Diabetes Nurse (GDN).
As a GDN I have visited many of the Trusts across our area providing education and training to identify patients with monogenic diabetes, support clinicians to get the right diagnosis and make treatment changes. | | | |
My interest in genomics stems from this role as I have seen first-hand the significant impact genetic testing can have on people’s lives and to the care and treatment they receive.
My aim for this role is to improve equity of access to appropriate genetic testing, continue to build on the established Links meetings and work alongside nursing teams who are already working within genomic services. I hope to share these models of care and support them becoming embedded into other areas of practice.
Anita Murphy East GMSA Lead Nurse
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Recommendation: Monogenic Diabetes Podcasts Available here are several podcasts by Prof. Andrew Hattersley and Prof. Maggie Shepherd about Monogenic diabetes. They have discussions with different health care professionals and people and their families who are affected by this condition; there are some powerful and moving conversations taking place and well worth a listen to. Or access their website for further information.
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Tackling inequalities in Genomics A new report has been published by the University of Nottingham and the NHS Race and Health Observatory which reveals solutions for the lack of minority groups within genetic research.
Why is this significant? The first human genome was sequenced back in 2003, and since then genomic technologies have advanced rapidly, resulting in thousands of human genomes being sequenced on a regular basis. | | | |
However, most studies within this speciality are based on populations of European ancestry. This means that the data available does not necessarily represent all populations. More data is needed from other populations to ensure correct diagnosis and treatments, increased predictive accuracy and a better understanding of many conditions within different populations.
Read more here
Key recommendations from the report for Nurses and Midwives to consider include: - Ensuring diverse patient groups and communities are involved in discussions about genomic medicine services.
- Understanding the local population and acting on any barriers limiting research participation.
- Monitoring of patient access to genomic services, whilst providing resources to support the complex discussions.
What else is happening to improve diverse data? Genomics England have a number of initiatives, one of which includes ‘the diverse data vision’ which describes some focus areas to improve the diversity of genomic data.
Want to get involved?
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Genetic testing in pregnancy-experiences of Black women and their families-research study Michelle Lowe, Research Fellow and Senior Social Scientist from Great Ormond Street Hospital has an interest in maternal inequalities and is addressing these through adopting inclusive research practices.
She would like to speak to healthcare professionals who discuss prenatal testing with families to get their views on equitable access to prenatal genetic and genomic tests and discuss ways to support families who are offered them during pregnancy. | | | |
If you're interested in taking part in a 30–45 minute online interview, you can contact her at michelle.lowe@ucl.ac.uk,
We were joined by Michelle at the East Genomics Prenatal Forum in June. She discussed some of the barriers for parents with prenatal screening and testing. To hear this talk you can access the recording via our FutureNHS workspace. (You can request access to this site if you have an NHS email address). Michelle will also be attending our Regional MiGGs Meeting on Wednesday 28 August to discuss this further. For the meeting link, contact egmsa@nnuh.nhs.uk.
Ethical challenges around race, ethnicity and ancestry in genomic services - research study Nishtha is a postdoctoral fellow at the Centre of Human Genetics, University of Oxford and is conducting a study to explore the ethical challenges around race, ethnicity and ancestry in genomic services. She is interviewing genomics healthcare professionals for this purpose. If anyone is interested in taking part in this important work please contact her at nishtha.bharti@well.ox.ac.uk. | |
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Ride for Rare Find out more here, including how to take part and how to sponsor participants.
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This awareness and fundraising week for those with a genetic condition runs from Monday 16 to Sunday 22 September 2024.
Even if you aren't able to don the denim, there are lost of ways to support and get involved. Find out more on the Jeans for Genes Week website. | | | |
| A roundup of what has been happening across our region
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Midlands Maternity & Midwifery Forum Jo and colleague Karen Creed, Lead Midwife from Central & South GMSA attended the Maternity & Midwifery Forum in Birmingham in May. We asked attendees about their knowledge of genetics, genomics and epigenetics. The survey identified that more people are aware of the term genomics, but there is still a high proportion of people not knowing about epigenetics. You can find out more about epigenetics here.
Over 50% of professionals thought that genetics and genomics is relevant to practice, 36% were unsure and 12% did not think it is relevant to practice, even following a discussion at the event.
The survey highlighted that many clinicians are still not aware of the valuable resources that are available for further learning and support. However, most attendees, wanted to learn more about genomics in nursing and midwifery. You can find out what education & training is available for nurses and midwives here. | |
Congratulations Marie! We also provided a raffle prize for the event, which included some luxury chocolates, a one-of-a-kind genomics mug and a signed by the author genomics book ‘What is DNA?’.
Congratulations to Marie Stocks from Derby & Burton NHS Trust who was the lucky winner, I hope she had an opportunity to read the book with a nice cuppa and chocolate 😊. A big thank you to Dr Julian Barwell for donating and signing the book for the prize. | | | |
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#GenomicsConversation Week #GenomicsConversation week (held this year during 24-28 June) is led by the Genomics Education Programme. This event takes place annually and features several events and activities to spark a conversation about genomics and increase awareness of the subject across the workforce, including Nurses and Midwives.
This year’s conversation aimed to reflect the impact of genomics on patients and professionals and what is to come, covering five themes across the week. The Lead Midwives across six GMSAs came together to reflect on the themes and start the conversation. You can read more here. We also presented at the Matflix event, hosted by the Maternity & Midwifery Forum, which you can watch here. | |
During this week, we hosted a Genomics BITE on inherited cardiac conditions and sudden cardiac death (SCD).
Chloe Ferguson, Clinical Nurse Specialist for Inherited Cardiac Conditions, Glenfield Hospital Leicester, hosted the event, which had over 40 attendees.
If you missed the event, then you can watch the recording here. | | | |
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East Genomics Showcases We ran three online showcase events for Cancer, Rare and Inherited Conditions, and Prenatal and Paediatrics in July, which covered clinical, patient, research, training and service improvement aspects of genomic medicine. We were delighted to welcome over 400 of you across all events.
Please find below links to the slides and full recordings from each event. | | | |
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Education & Network Dates for the Diary | |
- Midwives in Genetics and Genomics (MiGGs) Regional Network
28 Aug, 12:00-13.30. For meeting link, contact egmsa@nnuh.nhs.uk - East Genomics Prenatal Forum
16 Sep 13:00-14:30. Sign up here.
Nursing & Midwifery Links Showcase Event
19 Sep, 12:00-13:30. Contact egmsa@nnuh.nhs.uk for meeting details. Let's start the discussion: How do we handle disparities across maternal health 19 Sep, 13:00-14:30. Find out more and register. GCK Diabetes in pregnancy event - 2 representatives from each hospital site within the East GMSA Boundary
25 Sep, 09:30-16:30. Sign up here.
East Paediatrics Genomic Forum
26 Sep, 12.30-13.30. Contact egmsa@nnuh.nhs.uk to receive details. Introduction to Human Genetics and Genomics module, Cambridge
14-18 Oct (apply by 13 Sep). Apply here. Nursing Live Event Liverpool
23-24 Oct. A free two-day event for nurses. Counselling Skills for Genomics module, Cambridge
Mar 17-21 2025 (apply by 14 Feb). Apply here.
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Virtual Prenatal Genetics Short Course 2024 - funding opportunity The East Genomic Medicine Service Alliance (GMSA) is offering a few FREE places to Nurses and Midwives on the upcoming virtual genetics short course, run by Guy’s and St Thomas’s Genetic Counselling Team. This course is being delivered online between 16 October – 28 November over 6 half day sessions. Find out more about the course here. Criteria: - Work within the East Midlands or East of England GMSA Boundary
- Work within genomics e.g. Screening or Fetal Medicine Midwives, Nurses working in early pregnancy pathways.
- Attend course within own time or have written confirmation of protected time from a manager.
- Must attend all sessions.
- To provide feedback to other staff members following the course
Please complete and return the EOI to Joanne.Hargrave@nnuh.nhs.uk by 5pm on Monday 12 August to be considered. | |
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Join the national Association of Genetic Nurses and Counsellors (AGNC) for only £20 The AGNC (along with its umbrella organisation, the British Society for Genetic Medicine) has introduced an affiliate membership scheme so that nurses and midwives can join this professional society and interact with others across the country working to support patients accessing genetic/genomic testing and services. Joining the AGNC gives nurses and midwives access to educational materials/opportunities and a community of supportive professionals. Join here, or email membership@bsgm.org.uk with queries. | |
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Education, Training and Resources | |
The Genomics Education Programme has a wide range of free to access learning and education resources for nurses, midwives and health visitors. No matter where you are in your leaning journey about genomics, there is something for you to build your knowledge and support your NMC revalidation including: - Bite size genomics a series of 10 minute animations and films
- Genomics 101 a series of 9 short introductory courses, each lasting about 30 minutes for those with a little bit or no knowledge about genomics
- Nursing Educator's Toolkit
- Taught courses up to Masters level
- GeNotes help healthcare professionals make the right genomics decisions at each stage of a clinical pathway. GeNotes are in development to provide:
- In The Clinic information focussed at the point of patient care with clinical scenarios, when to consider genomic testing, what you need to do and the results stage
- A Knowledge Hub accessed via links within ‘In The Clinic’ to external sources and resources and signpost to relevant guidelines, including NICE.
- E-learning:
- Patient Choice: Discussing whole genome sequencing with patients (rare disease)
- Genetic Testing for Hereditary Breast Cancer
- Genetic Testing for Inherited Cardiac Conditions
- Rapid Prenatal Exome Sequencing
- FutureLearn courses
- Royal Colleges:
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Meet the East GMSA Nursing and Midwifery Team | |
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