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Issue 12 | Nov 2024

Welcome from Lorraine

Hello all. I wanted to start by affirming the importance for all nurses and midwives working within the NHS of understanding how genomics and genetic testing relates to your area of practice. East Genomics have adapted some Central and South region postcards aimed at nurses and midwives which explain more about how genomics relates to your role, and also some of the opportunities available to pursue further education and training.

Nurses and midwives are the largest workforce within the NHS and provide information and care at all stages of the patient journey.  We use genomic information to support correct diagnosis, clinical practice and interventions and are supported by the NMC proficiencies relevant to genomic practice. Developments within genomics are rapidly changing and it is important to keep up to date with these changes to ensure we can provide the best care to our patients. 

 

East Genomics provides updates within these newsletters and also runs bi-monthly education meetings, which are open to all nursing and midwifery staff who have an interest in genomics within our region. If there are specific areas you would like to learn more about then you can also access the website or contact Anita or Jo.


Lorraine Szeremeta

Chief Nurse, Cambridge University Hospitals NHS Foundation Trust

News and updates

Could you lead a genomics community of practice (with funding and support) in your area of interest?


We are seeking Expressions of Interest from healthcare professionals interested in running a Genomics Community of Practice (CoP) for their specialty or area of interest. Funding of just over £10,000, plus admin support, will be offered to support the set up and running of each CoP.


To meet criteria for the funding, applicants must:

  • Be based within the East Genomics region (see our map) and enable healthcare professionals across the geography to participate
  • Run monthly CoP meetings (with support) from January 2025 up to March 2026

You can watch our Education and Training Lead, Dr Gemma Chadratillake, explain our CoP model below, and access the Expression of Interest form on our website here.


Completed EoI forms should be submitted to egmsa@nnuh.nhs.uk by Friday 29 November.

     

European Registry of Hereditary Pancreatic Diseases recruiting families

The European Registry of Hereditary Pancreatic Diseases EUROPAC has been recruiting families with a history of Pancreatic Cancer and hereditary Pancreatitis since 1997 and have over 2200 families registered. It is an open ended study supported by  The University of Liverpool , Pancreatic Cancer UK, NHS England, NIHR, and Cheshire and Merseyside Cancer Alliance. For more information and inclusion criteria see here.

     

NHS Jewish BRCA testing programme

Ongoing recruitment continues for The NHS Jewish BRCA testing programme will see anyone over the age of 18 years with Jewish ancestry to look for the presence of BRCA1 or BRCA2 faults. Patients can be tested if they:

  • Live in England
  • Are aged 18 or over
  • Have one or more grandparent of any type of Jewish origin.

See the patient information sheet.

The East of England Cancer Alliance Regional Genomic Clinical Practitioner Service can support with further information about both of the above studies. For further information about their work within the region please see their website where you can see members of the team and sign up to their newsletter (coming soon).

     

Did you see us at Nursing Live?

We had representation at the Nursing live event held in Liverpool on 23 - 24 October. The two day event celebrated nursing and focussed on continuing professional development. There were a diverse range of speakers this year and many interactive sessions for nurses to take part in. We teamed up with nursing leads from other GMSA regions to have two genomics stands and we really enjoyed the opportunity to raise awareness of genomics in nursing. Between us we spoke to over 550 nurses from across the country, working in a wide range of areas - from acute settings, to primary care and community settings.  Next year's event will be held in Birmingham NEC on 5 and 6 November 2025 and is free to attend. You can find out more here

     

Health outcomes among Black communities

A study on health outcomes among Black communities led by the NIHR Bioresource, Kings College London and Genomics England aims to improve health outcomes for black communities in the UK by addressing their historical under-representation in health research.  


They are inviting individuals with a UK address aged 16 years or above from Black ethnic backgrounds to participate, people living with a health condition and those who are not are invited to participate in the improving black health outcomes (IBHO) Bioresource. They are also inviting people with a confirmed diagnosis of sickle cell or Thalassaemia to join regardless of ethnic background. Find out more here.

     

Podcast on barriers faced by diverse communities

A recent episode of Genomics England's podcast 'Behind the Genes' discussed the barriers that diverse communities face in accessing genomic healthcare and looked at effective strategies that can help improve these, listen here: Listen to the podcast here.

Follow this link to watch our recent joint nursing and midwifery session on improving access to genomic testing, with presentations by Dr Bajwa from the NHS Race & Health Observatory starting at 5.07 minutes, and Jo Balfour Managing Director of Cambridge Rare Disease Network (CamRARE) starting at 29.51 minutes.

     

Have you downloaded the QGenome app?

QGenome is a free NHS England-funded app offering clinicians readily-accessible, evidence-based clinical guidance and a streamlined mechanism to instigate genomic investigations and onward referrals, where necessary. 


The app contains a library with modules on cancercardiac, renal, prenatal and primary care guidance.

QGenome:
  • is a point of care tool for any healthcare professional or multidisciplinary team who needs guidance navigating the role of genomic testing at various stages of the patient pathway.
  • enables busy clinicians to quickly distinguish between patients with sporadic disease and those with a potential genetic condition by highlighting the relevance of genomics at specific decision points in their patient’s management.
  • is aligned to the NHS National Genomic Test Directory with links to genomic test request forms, record of discussion forms, national guidelines and published literature.
QGenome is available on iOS and Android devices and as a web app. For further information, including how to download, please see the QGenome website.

     

Bristol nurses win national award for genomics education program

University Hospitals Bristol and Weston NHS Foundation Trust nurses are part of a team that has won a prestigious national higher education award.


The Generation Genome Education Team, a collaboration between the University of the West of England, Bristol, and supported by UHBW has received a Collaborative Award for Teaching Excellence for developing and delivering a postgraduate training course in genomics and counselling skills.

Read the full story here and see the University of Bristol website for further information on the Genomic and Counselling Skills for Nurses and Healthcare Professionals module.

Events

Festival of Genomics and Biodata, January

We pleased to share that Anita, our Lead Nurse, and Jo, our Lead Midwife are both speaking at the Festival of Genomics & Biodata, taking place on the 29 - 30 January 2025 at the ExCeL in London. Registration is free for over 90% of attendees - including NHS colleagues - so register now to join them in January! You can search or follow #FOG2025 on social media to find out more about confirmed sessions and speakers.

     

NHS Genomics Healthcare Summit 2024

Registrations are now open for the annual NHS Genomics Healthcare Summit on Thursday 12 December 2024 at the Queen Elizabeth II Centre, London. You can find the agenda here, and register your free NHS place here.
A roundup of what has been happening across our region

Virtual Prenatal Genetics Short Course

18 Midwives were successful in receiving a funded space on the prenatal virtual short course hosted by Guy’s & St Thomas’. This funding was provided by the East Genomics, to support embedding genomics into maternity services. We look forward to hearing about what they have learnt and how they are going to use this information within their role. We aim to set up a session for sharing learning with other professionals in the new year.

Monogenic study day,

East Genomics provided a study-day for diabetes specialist teams, to understand how a form of monogenic diabetes can inform patient care within maternity services. A new e-learning package is now available via our new East Genomics e-learning website, which you can access here.


Thanks to Beth and Nichola

We also said goodbye to our monogenic diabetes specialist midwives Beth & Nicola, who have been leading on the monogenic diabetes project within the East. We thank them for their time and contribution to this project. You can find out more here: Glucokinase Hyperglycaemia testing within maternity services.


Prenatal Genomics Forum

We were fortunate enough to have scientists from the East Genomics Laboratory Hub, join us to discuss prenatal testing, consolidating aneuploidy testing within the region and best practice when ordering tests. If you missed it, you can catch-up by joining our dedicated FutureNHS page.

Generation Study public launch

We saw the official launch of the Generation Study, led by Genomics England in Partnership with NHS England. This research study will offer genomic testing for newborn babies within a chosen number of NHS Trusts across England, to screen for more than 200 rare genetic conditions. The study aims to identify conditions early on in childhood, to improve diagnosis, treatment and ongoing support. You can read more here.

Education, training and dates for the diary

  • Counselling Skills for Genomics module, Cambridge
    Mar 17-21 2025 (apply by 14 Feb). Apply here.

     

East Genomics e-learning website launched!

We are thrilled to announce the launch of our new genomics e-learning platform this month.


Developed by East Genomics with support from Health Education England's Genomics Education Programme, the modules are designed to support healthcare staff to develop their knowledge and professional practice around genomic medicine and testing services, ultimately for the benefit of patients.

     

Our next Prenatal Genomics Forum will be hosted by Demi Blair, Obstetrics and Gynaecologist doctor at NNUH, who will be spotlighting bereavement care in maternity services. Please 

book your free place for the session on Monday 16 December. 

     

Genetics & Genomics: What Midwives need to Know

This CPD day o27 February 2025 is for midwives or those working within maternity services within the East Genomics region, who wish to gain an insight into how genetics and genomics can support the care of the pregnant person, fetus or newborn, and the wider family For more info, please see event attached flyer.

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:

Meet the East GMSA Nursing and Midwifery Team

Contact: Anita MurphyJo Hargrave or Katy Blakely. We also have a network of LINK Nurses across our 29 Partner Trusts. Find out more here.

Useful links

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