The new service offers professional therapy treatments and patient advocacy to people aged 14-25 who are affected by a mitochondrial disease. It is intended for patients and those close to them, e.g. siblings, who may be directly impacted.
The service is based on a model initiated by the Wellcome Centre for Mitochondrial Research in Newcastle and adopted by The Lily Foundation. It currently provides distance support via phone or video to patients across the UK, working closely with NHS mitochondrial clinics. Pilot trials are underway, funded by public donations raised for The Lily Foundation through the charity initiative Global's Make Some Noise. Plans are being made to expand the service pending additional funding becoming available.
Announcing the news, Liz Curtis, CEO and co-founder of The Lily Foundation, said:
"We're delighted to be launching this much-needed service at a time when national anxiety is high, and young people with mitochondrial diseases are particularly vulnerable. We're very grateful to the amazing team at Global's Make Some Noise for helping to make it possible, and to all our supporters who donated so generously. We see this as a major step forward in our ongoing mission to bring positive change to the lives of mito patients and their families."
Often people are afraid to treat what they don't understand, so raising awareness will hopefully go someway to improving access to therapy treatments for patients."Ben Marram, an occupational and clinical psychologist who specialises in working with patients who have neurological illnesses, has been recruited to lead the program. Commenting on his new role, he said:
"As far as we know, these are the first psychological services dedicated to people with mitochondrial diseases, so it's quite an exciting opportunity to develop the service and provide some vital support for patients and their families. The first step is to really listen to patients about what they feel is needed, and then look at how best we can provide that support for them."
Ben is experienced in helping patients cope with the devastating impact of neurological disorders, which can include the gradual loss of physical and cognitive abilities.
"Mitochondrial diseases often stop people from being able to live full lives and do the things they enjoy, such as physical activities, work and socialising with friends. So a big part of my role will be helping people to get back in touch with those things. The feedback we've had so far is that people are really keen for that sort of support."
In addition to providing clinical support, the service aims to help patients navigate the healthcare system and access appropriate NHS services, while also working to raise awareness about mitochondrial disease in the field of mental health.
"Our aim is to increase awareness and also access by educating mental health professionals," said Ben. "Often people are afraid to treat what they don't understand, so raising awareness will hopefully go someway to improving access to therapy treatments for patients. Their diagnosis shouldn't be a barrier to accessing the mental health treatment they need."
If you are aged 14-25 and would like help dealing with the psychological impact of mitochondrial disease please contact [email protected].