The specialist service, which launched in April 2021, was initially focused on providing psychological support to young people aged 14-25 affected by mito. Following additional grant funding from the Stoneygate Trust, it has now been extended to include adult users.
The service provides dedicated mental health advice, psychotherapeutic and clinical support to people directly affected by mitochondrial disease, including those with a diagnosis, their partners, family members and carers. The service is offered throughout the UK, via mitochondrial centres working in partnership with The Lily Foundation.
In its first year of operation the service provided 162 consultation sessions to young people. Support includes one-to-one counselling with a clinical neuropsychologist, liaising with local GPs to provide appropriate care, and help setting up longer-term support.
Commenting on the increased funding, Liz Curtis, CEO of The Lily Foundation, said:
"This is good news for everyone affected by mitochondrial disease, and for the mito community as a whole. Mito is a complex disease that can cause life-changing disabilities, including neurological ones. Everyone is affected differently, so it's important to provide psychological support that is informed not just about the medical implications of the disease, but also how it impacts lives and relationships."
Commenting on the grant funding, Liz added:
"We are immensely grateful to the Stoneygate Trust. Their incredibly generous grant has helped secure this vital service for a further two years, and means we can expand it to help vulnerable adults as well as young people."
Heading up the service is Ben Marram, a clinical neuropsychologist specialising in neurological conditions. He said that so far the service has highlighted the demand for dedicated support for vulnerable people affected by mito.
"Unfortunately we know that public healthcare services face increased demands , and many people with mitochondrial disease fall through the gaps, particularly those with cognitive issues who need specialist support," he said.
"We are seeing people with a wide range of issues. You might have someone who has lost a child to mitochondrial disease, or who has received a diagnosis and is struggling to adjust. Then there are those facing up to serious disability, who might be feeling very isolated and anxious. Where people experience neurological difficulties, they may need adapted intervention to be able to talk about their thoughts and feelings in a supported setting."
There is already a waiting list for the service, and Ben hopes it will continue to grow to meet demand.
"People living with mito may face additional challenges accessing services, or services may lack knowledge about this rare disease. A diagnosis of mito alone may leave services wondering if they are the right people to help. It’s important that all services are provided information to make sure people with mito can access the same quality of service as everyone else.
Mitochondrial disease, or 'mito', is a term used to describe a range of genetic disorders caused by faulty mitochondria, the organelles that 'power' cells and provide the body with energy to grow and function. Mitochondrial disorders can affect people at any age. Symptoms are complex and wide ranging, and while everyone is affected differently, many people die as a result of their illness.
The Lily Foundation is the UK's leading mitochondrial disease charity and the largest charitable funder of mitochondrial research in Europe. Its mission is to improve the lives of people affected by mitochondrial diseases, while working towards a future where mitochondrial diseases can be effectively treated or cured.