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Issue 9 | February 2024

Welcome from Jo

Welcome to our first Nursing and Midwifery Genomics Newsletter of 2024. There's been a change to our team as Lead Nurse Annette Breen has returned to her role within Nottingham University Hospitals, having come to the end of her fixed-term East GMSA contract. Thank you Annette for all your hard work with us. I’m sure you’ll join us in wishing Annette all the best in her new role.

We are therefore recruiting a new Nursing Lead. More on that below!


Lots to cover this month, but I particularly wanted to highlight that if you work in Midwifery or Fetal Medicine services you won't want to miss the first meeting of our new East region Prenatal Genomics Forum. More on that in tour events, training and education opportunities below. 

Please do share this newsletter with colleagues and encourage them to sign up to receive it here.


Joanne Hargrave

East GMSA Midwifery Lead

Norfolk and Norwich University Hospitals

News and updates

Could you be our next Nursing Lead?

We are pleased to share with you an exciting opportunity to deliver strong leadership in nursing to transform the health and care of patients and communities through a fast-changing national Genomic Medicine Service.


As Nursing Lead you will be supported by the Chief Nurse(s) of the East GMSA, be part of a multi-disciplinary Clinical Leadership Team and will provide clinical leadership for the delivery of national and local nursing activities including:

  • Nurse-led transformation projects (local or part of the national Nursing & Midwifery Collaborative (attended by all 7 GMSAs)
  • Building capacity and capability across the nursing including the identification of essential skill sets and competencies for the embedding of genomic medicine as part of baseline reviews
If that sounds appealing, please see the job advert for the NHS Trust that you are either currently employed by, or if employed elsewhere, that you would be most interested in joining should you be successful in your application:

     
Supporting Nurses and Midwives knowledge in Genomics to improve patient care and outcomes 
A lot of the time when we talk about genomics and genetics, nurses and midwives think that it is outside the scope of their practice. However, having knowledge of where genomics fits into practice and developing the right skills to support clinical conversations can make a stark difference in the choices, care pathways and research opportunities for patients and their families. 

Last year, the East GMSA secured funding to support four midwives to complete a Prenatal Genomics’ short course hosted by Genetic counsellors from Guy’s and St Thomas’. The course aims to equip healthcare professionals with the basic skills to support and manage complex scenarios and provide information on genomic testing and technology. Joanna and Emma share their feedback on the course:

"I found the course very informative and enjoyed having different speakers and a variety of attendees from different backgrounds. I feel this really supported learning and gave varying perspectives on the topics covered. The learning will influence my care when working clinically but will also shape how I teach around this subject and gives me more confidence in a topic area that I had had little training on previously."
Joanna Swanton-Midwifery Lecturer Bedfordshire/Clinical Midwife


"I am soon starting a new job in antenatal services working within the Pregnancy assessment service and Screening service. This course was an opportunity to get some invaluable knowledge regarding genetic counselling, genetics knowledge and informed consent for screening. No session was the same, varying from basic genetics to mock counselling exercises, to talks about skeletal dysplasia, to a detailed look into screening tests and diagnostic testing. 


"The best care for our families is done by breaking down communication barriers and having a multidisciplinary approach.  A good majority of those attending the course were training genetic councillors with a scattering of midwives so we all brought something useful to the table regardless of background; it was great to bounce questions and discussions with the other attendees.


"I would definitely recommend the course to anyone working in maternity regardless of the level of knowledge and understanding of genetics that you have."

Emma Holmes-Midwife University Hospitals of Leicester

     
National Award Nomination for Lynch Project Nurses
Lynch Syndrome causes a variety of cancers, the most common being endometrial and colorectal. Early identification of patients with Lynch Syndrome is vital and screening for Lynch Syndrome via mismatch repair Immunohistochemistry (MSI) testing is now in the NICE guidelines for multiple cancers and a strategic priority for NHS England. 

Lynch project nurses had been recruited across all 7 GMSAs to raise awareness, disseminate information and support the integration of Lynch Syndrome testing and screening into routine clinical care with the aim of equal access for all patients diagnosed with Lynch Syndrome. 

Due to the great amount of work and progress that has been made in this pathway, the Lead GMSA for the Lynch Transformation project have nominated the Nurses as a Team for the British Journal of Nursing Oncology Nurse of the Year Award!   

We wanted to wish Melissa Cambell-Kelly from the East GMSA, the best of luck with this nomination. The winners of the award will be revealed on 22 March 2024.

     
Updated Genomic Competency Framework for nurses published 
Working with nurses in practice, education and policy, the GEP has revised the existing competency framework from 2010, to reflect the expansion of genomics services within the NHS. An expert steering group provided advice and guidance and a consensus methodology has been used to develop the framework. The framework is applicable to all registered nurses irrespective of role or area of clinical practice. You can download and read the full framework here.


We are seeking the expertise of practice educators in Nursing to review how these could be embedded into post registration training. Please contact East GMSA Programme Manager Katy Blakely if you are interested in lending your expertise.

     

Festival of Genomics & Biodata

On 24-25 January over 5,000 people flocked to London’s ExCel Centre for the Festival of Genomics and Biodata, the UK’s largest annual life sciences event.


Our Lead Midwife, Jo Hargrave co-led a session with fellow ‘Midwives in Genetics and Genomics', and reflects on the festival below:

“What I found interesting on the first day was listening to a talk on genetic anomalies and infertility, which highlighted that by identifying these anomalies we can assist with fertility programmes. In the afternoon a talk on Prenatal Exome Sequencing highlighted how education and joined-up working within multidisciplinary teams improves the care of women and their families, which is something we have been looking at improving within the East of England.


On day two I joined my Midwives in Genetics and Genomics (MiGGs) colleagues, as well as a Genetic counsellor, Clinical Scientist, Pharmacist and a patient representative to demonstrate how collaborative working within a multidisciplinary team can provide high quality care for a pregnant person and their family.


I was humbled to hear our patient, Lorna, speaking about both her and her daughter’s experience of Cystic Fibrosis and all the positive work that has been done to improve care, testing and treatments".

     

New project to embed monogenic diabetes pathway

Many maternity services for diabetes in pregnancy are currently misdiagnosing many women with genetic forms of diabetes as they are being identified as having gestational diabetes (GDM). As genetic testing for diabetes is now integrated into NHS services for those that meet criteria, this provides an opportunity to improve individualised care.

We can confirm that a new project has been approved that will provide education and support to doctors and midwives to embed the monogenic diabetes (MD) clinical pathway initiative in centres in our region. Importantly this will be done in a bespoke manner to capture regional differences to increase patient access to testing. 

To initiate this project, we have offered a funded place on a National Study Day being held in London in February. We will have a representative attending from 11 of the 16 NHS Trusts within the region.  To find out more about this project please contact Joanne.Hargrave@nnuh.nhs.uk.
Events, training and opportunities
NEW East Region Prenatal Genomics Forum 
We are pleased to invite anyone working in Prenatal services to join our new Forum which aims to bring together the MDT team in prenatal services - across the East Midlands and East of England - to discuss genomics in practice. 

The topic for our first meeting, which takes place on Tuesday 12 March 2024 via MS Teams, is Genomic Testing in Fetal Medicine: Clinical and Legal Implications of Missed Opportunities. Please visit our Forum web page for more information and to register your place.
     

Nursing and Midwifery Meetings


Regional Midwives in Genetics and Genomics (MiGG)
A regional network of midwives discussing national and local updates relating to practice and education. Held bimonthly, upcoming dates:

  • 28 Feb, 12:00-13:00
  • 24 April, 12:00-13:00

Joint Nursing and Midwifery Links Meeting
A celebration of the last years successes for nurses and midwives in genomics.

  • 27 March, 12:00-13:30

Nursing Genomic Links Network

A regional network of nursing leaders/genomic champions discussing national and local updates relating to practice and education. Held bimonthly, upcoming dates:

  • 22 May, 12:00-13:00

To sign-up to any of these meetings, please contact egmsa@nnuh.nhs.uk.

     

Lynch Syndrome MDT event

St Mark's Academic Institute are holding a one day course on ‘Genomics for the Colorectal Cancer MDT’.  It is aimed at colorectal cancer MDT members, colorectal nurses, trainees and those involved in the bowel cancer screening programme.

     

Supporting improved access of communities that practice close relative marriage to genetic services

This online course on Monday 26 February will give you an in-depth understanding of the social and genetic implications for children born within close relative marriage and the role that healthcare professionals can play in supporting their families. Find out more and register your place here.

     
Lynch syndrome patient event in Nottingham 
A free hybrid event in Nottingham, arranged to allow patients to meet clinicians involved in caring for individuals with Lynch Syndrome, as well as meeting others with this condition. Please signpost Lynch Syndrome patients to the where people can register their place. For any questions relating to the lynch syndrome project, please contact Melissa at melissa.cambellkelly@nnuh.nhs.uk.
     
Rare Disease Day 2024 This year Rare Disease Day - an annual international day to raise awareness of rare diseases and conditions - is itself even more rare as it falls on 29 February this leap year! Find out what's happening locally and how you can get involved on our website. Planning something within your service or Trust? Is genomics a big part of your role and could you help support an information stand at NUH, CUH, NNUH or UHL? Please get in touch here if so.

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.

Meet the East GMSA Nursing and Midwifery Team

Contact: Melissa Cambell-Kelly, Jo Hargrave or Katy Blakely. We also have a network of LINK Nurses across our 29 Partner Trusts. Find out more here.

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