‘One-stop’ clinics put patients at heart

With the help of local charity, the Joe Humphries Memorial Trust (JMHT), family screening and diagnostic genetic testing services have been established, which will support individuals with diagnosed ICCs and their family members, under the leadership of Consultant Cardiologist, Dr Harshil Dhutia. 

The term ‘ICCs’ describes genetic diseases affecting the heart muscle, or electrical system. Up to one-in-300 people are affected by these conditions, which are the leading cause of non-accidental death in young people. 

• The family screening clinic will support people who have a family member with a diagnosis of an ICC through regular screening, education about the condition, red flag symptom awareness and decision-making around predictive genetic testing, if this is an option for them. 
• Diagnostic genetic testing will offer further support to individuals with an ICC. Sometimes, a specific gene can be identified as the underlying cause. If identified, this means predictive genetic testing can be offered to family members, with the opportunity for further condition counselling, how to manage symptoms and the red flags to look out for. 

ICC Clinical Nurse Specialist, Chloe Ferguson, whose role was funded by JHMT, said: “We are striving to create a ‘one-stop clinic’, increasing our screening capacity and support for families and easing some of the processes a family affected by an ICC will go through. Our patients can be young and active and might need to make changes to their lifestyles, to keep themselves safe.” 

Kishan Lakhani was referred to the service after his brother tragically passed away, following a sudden cardiac arrest. He says: “We had no answers and felt that nothing could be done, until I saw Dr Dhutia and Chloe. 

“Going through an extensive process of testing and screening has been a major turning point for me personally. We know now that everything possible is being done to understand what happened. My brother’s samples are being tested to the best of current technology and research and the fact that my family can also be tested has made a big difference.” 

The Joe Humphries Memorial Trust is a Leicestershire-based charity, set up in memory of teenager Joe Humphries, who collapsed and died in 2012 while out jogging. Joe was a victim of sudden arrhythmic death syndrome (SADS), a group of genetic heart diseases which can cause sudden death. 

Steve Humphries, Joe’s Dad, said: “The UHL ICC clinics at Glenfield hospital are such an important asset to affected families, who can now be seen in a ‘one-stop shop’ setting at a time when they might be dealing with the devastating loss of a young person.”