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Firstly we wanted to let you know that we have appointed a new Lead Nurse in the GMSA, and we look forward to linking her in with the East of England N&M networks when she starts her role.
May sees the celebration of International Day of the Midwife on Sunday 5 May, and International Day of the Nurse on Sunday 14 May. To all of you, thank you for all your work in bringing equity of access of genomic testing and care to patients. | | | |
If you want to find out about the key roles of nurses play in bringing the benefits of genomics to patients, you can read this Nursing Times article written by a fellow Nurse working in Genomics.
Finally I wanted to highlight that I will be joining Karen Creed, Central and South GMSA Lead Midwife at the Maternity and Midwifery festival which is being hosted in Birmingham on Tuesday 14 May. We will be on an exhibition stand, ready to talk all things genomic! If you haven’t signed up yet, then please do come along! | |
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National Nursing Work
Colette Scrace, Clinical Nursing Lead, Genomics provides a few words about the National work:
"Following the successful showcasing of nursing input into genomics at the Genomics summit at the Kia Oval in December 2023, the national focus in nursing continues to be increasing nurse’s awareness of, and confidence in, using and offering genomics to their patients.
To that aim, we have developed a nursing and midwifery framework illustrating how the professions will support delivery of the NHS England national genomics strategy (2022) NHS England » Genomics strategy. The intention is to publish the framework on NHS Futures, and the link will be published in future newsletters.
For nursing, we will establish community of practice (COP) groups, focusing on specific condition pathways or clinical areas, commencing with sickle cell disease (SCD). The COP will support identification of best genomics practice and challenges in the delivery of best practice. The COP will co-produce nursing genomics competencies for that condition.
For the Sudden Cardiac Death (SCD) community of practice, we are keen that nurses working across all practice areas, such as assisted conception services, emergency departments, acute services, primary care and community services join the SCD community of practice.
Future community of practice will encompass genomics provision for nurses working in prison health, the armed forces, mental health, and primary and community services".
Please contact colette.scrace@nhs.net directly for further information on any of the communities of practice.
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Cancer Vaccines
Emmanuel Ncube, Strategy Director at East Genomic Medicine Service Alliance, provides an update:
"Cellular Pathology Genomic Centres (CPGC) are being set up nationally and each region can have up to 4 CPGCs. In the East GLH geography two CPGCs have been approved in Leicester and Nottingham, with two further sites - Cambridge and Norfolk and Norwich - in discussion.
CPGCs will consolidate histopathology staff and equipment, and consolidate processing and preparing of tissue prior to submission to GLHs, to remove the burden from the smallest histopathology labs within the region. This will also provide capacity and testing pathways for patients across the region where they are not currently being offered. CPGCs should also be looking to contribute towards the Cancer Vaccine Launchpad (CVLP).
The NHS CVLP is a platform that will speed up access to messenger ribonucleic acid (mRNA) personalised cancer vaccine clinical trials for people who have been diagnosed with cancer. It will also accelerate the development of cancer vaccines as a form of cancer treatment".
In January the UK Government announced a partnership with BioNTech which aims to speed up the development of RNA cancer vaccines. The Genomics Education Programme have highlighted the top 3 things you need to know here: Cancer vaccines: Three things you need to know - Genomics Education Programme. | |
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Updates to the National Genomic Testing directory
R445: Non-invasive prenatal testing for aneuploidy testing You may be aware that, as part of the National Screening pathway, NIPT can be offered to parents, where they have received a higher chance combined or quadruple test. In January 2024, NIPT became one of the newly commissioned tests available to prenatal services, whereby any previous pregnancy with reported full trisomy of chromosomes 21 (Down’s syndrome), 18 (Edwards’ syndrome) or 13 (Patau’s syndrome) who meet the National Testing Eligibility Criteria can access testing.
For service details please contact your local antenatal screening or fetal medicine team directly. All testing will be routed via the NIPT laboratories commissioned by the Fetal Anomaly Programme. You can find out all details on the inclusion and exclusion criteria in the National Genomic Testing Directory. You can also watch our Genomics BITE session on the R445 testing pathway below: | |
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Update on the Nurse of the Year awards Commiserations to the Lynch Nurses who did not win the award for Oncology Nurse of the Year. You are all winners in our minds! If you want to see who was successful in winning awards, you can find out more here. | |
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Monogenic Diabetes in pregnancy project | |
We want to wish Beth Evans (left) and Nicola Young (right) - both Specialist Midwives, Monogenic Diabetes - a warm welcome as they have now joined East GMSA on a secondment from the South East GMSA for 6 months. | | | |
Beth and Nicola will be working on a project to educate, support and empower maternity diabetes teams to embed testing for glucokinase hyperglycaemia (GCK), a sub type of monogenic diabetes, in the existing gestational diabetes care pathway.
During their time with SE GMSA Beth and Nicola created a variety of supporting resources, including 3 patient information leaflets, and are finalising an e-learning module to support maternity diabetes teams to recognise monogenic diabetes and facilitate testing when appropriate.
They also organised and facilitated a study day for maternity diabetes teams which was attended by teams from across five GMSAs. As part of their project in the East, Beth and Nicola will be working alongside Jo Hargrave and Dr Vidya Srinivas to scope current practice, assess the training and educational needs of maternity diabetes teams and provide suitable training. | |
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As a healthcare professional, what do you need to know about monogenic diabetes (MODY)? | |
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Events, training and opportunities | |
NEW East Region Prenatal Genomics Forum We hosted our first Prenatal forum last month, which included Neonatologists and Fetal Medicine Consultants from Cambridge University Hospital, and Jane Fisher from the Charity Antenatal Results and Choices discussing the clinical and legal implications of missed opportunities in genetic testing. If you missed the session, and you are a healthcare professional working across the East Midlands or East of England, then you can access the recording below here on our FutureNHS workspace. (You can request access to this site if you have an NHS email address).
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Undiagnosed Children’s Day
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On the last Friday of April every year, Undiagnosed children’s Day is celebrated. Despite so many advances in genomic medicine, there are still many children and their families affected by undiagnosed genetic conditions. | | | |
Undiagnosed Children’s Day is an opportunity to raise awareness about what this means and how the support organisation SWAN UK (Syndrome without a Name) can support families so that they do not feel isolated and alone. The theme this year was “I wish I’d heard about SWAN UK sooner." You can find out more about this, and the work of SWAN on their website. | |
Vaila Morrison, PPV Panel Member agrees. Her daughter was undiagnosed for the first 6.5 years of her life, finally receiving a diagnosis of ultra rare KAT6A Syndrome through the DDD study. "It was a very confusing and isolating time, knowing your child had a number of symptoms but nothing connecting them together allowing you to focus on how to help her. Connecting with SWAN UK when my daughter was 2.5 years old was a lifeline. Everyone in the community has very different journeys, but also many common experiences to be able to share and to support each other." | |
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Course alert for healthcare professionals!
Genomics and Counselling Skills This is a virtual course hosted by University of the West of England (UWE). The Genomics Education Programme has funded a limited number of places to cover course fees, for NHS healthcare professionals working in England on a permanent contract from the full range of patient-facing backgrounds, such as allied health professionals, nurses, GPs, midwives and health visitors. Applications have now opened for the 2024 cohort with a deadline to apply of 5pm on Monday 20 May 2024. Find out more and apply.
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Course alert for Nursing and Midwifery Educators!
How to Teach Genomics: A workshop for Nursing and Midwifery Educators 8-11 July 2024, Wellcome Genome Campus This course aims to equip educators with knowledge and resources to design and deliver genomics education for undergraduate degree nurses and midwives. The workshop is for those educators in Higher Education Institutes looking to update current teaching content or tertiary educators who plan to incorporate genomics into teaching for nurses or midwives. Find out more.
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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
- 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.
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Meet the East GMSA Nursing and Midwifery Team | |
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