Chloe Ferguson has started an exciting journey as the first Clinical Nurse Specialist in Inherited Cardiac Conditions Services at UHL.

Chloe, whose role was funded by the Joe Humphries Memorial Trust (JHMT) will work with Laura Vilajuana, a specialist genetic counsellor to enhance the care for patients with inherited cardiac conditions and their family members across the Trust.

The JHMT is a Leicestershire based heart charity set up in memory of Leicester teenager Joe Humphries, who collapsed and died in October 2012 while out jogging near his family home in Rothley, Leicestershire. Joe was a victim of sudden arrhythmic death syndrome (SADS) – a group of lethal heart diseases which can cause sudden cardiac death in young people. The Trust provides free CPR training, helps to fund community defibrillators and campaigns for better understanding of sudden cardiac death in young people as well as running the Inspire Awards small grants scheme for young people. Over the past 11 years, JHMT has also established a patient and public engagement partnership with the UHL.

Inherited Cardiac Conditions is a term used to describe genetic diseases affecting the heart muscle (also known as cardiomyopathy) or electrical system (also known as channelopathy). As many as 1 in 300 people are affected by these conditions. Inherited Cardiac Conditions are the leading cause of non-accidental death in young individuals.

The Inherited Cardiovascular Conditions service at UHL offers specialized care for diagnosing, evaluating symptoms and managing patients and families affected with inherited cardiac conditions. The team is multi-disciplinary and includes adult and paediatric cardiology, specialist nursing, physiology and clinical genetics/counselling.

Dr Harshil Dhutia, Consultant Cardiologist at the Glenfield Hospital and clinical lead for the inherited cardiac conditions service at UHL said: "We are delighted that Chloe has joined our team. As the demand for the service is ever increasing to a regional level, Chloe is a welcome addition to the team in continuing to deliver high-quality care for patients with inherited cardiac conditions and their family members. Patient and public engagement is a cornerstone of our service and therefore I would like to personally thank the JHMT on behalf of the UHL for supporting Chloe in this exciting and pivotal role."

Chloe said: "I am excited to embark on this journey to create a service that families with an ICC deserve. I hope that my role can ease some of the processes a family affected by an ICC will go through. I'm striving to create a 'one-stop clinic', increasing our screening capacity and supporting genetic testing for families."

Steve and Angie (Joe's Mum and Dad) said on behalf of JHMT: "We are so happy that Chloe has joined the team in the ICC clinic at Glenfield Hospital. We are delighted that Joe's Trust (JHMT) - through the amazing work of our supporters - has enabled this vital role. Chloe's post is the culmination of a lot of work to create this important position to help families who are affected by inherited cardiac conditions. It is such an asset to UHL that thanks to the ICC clinic, they can be seen in a 'One stop shop' setting rather than having to go to various different departments and hospitals at a time when some families are dealing with the devastating loss of a young person due to the condition."

In 2020, the JHMT funded the first Childhood Bereavement Officer post to ensure that families who experience the death of a child within UHL between ages 0-18 (excluding maternity and neonatal deaths) have clear support in the immediacy and coming months after a death.

To find out more about the work of JHMT go to www.jhmt.org.uk

Photo:

L To R: Chloe Ferguson ( Clinical Nurse Specialist in Inherited Cardiac Conditions Services at UHL) and Laura Vilajuana ( specialist genetic counsellor to enhance the care for patients with inherited cardiac conditions and their family members across the UHL)