Today in the UK, six people will hear the devastating news that they have motor neurone disease (MND) – a rapidly progressive neurological disease which attacks the nerves, leaving those affected unable to walk, talk, eat and ultimately to breathe. There is no effective treatment and no cure. One third of people will die within a year of diagnosis.
Whilst our research into understanding the disease, potential treatments, and finding a cure will continue, we can’t neglect the needs of people who are living with MND today. 62% of people diagnosed with MND say they experience anxiety or depression, but people with MND don’t routinely get help to deal with the impact of the disease on their mental health.
“After my diagnosis I was in a daze. When it came to telling my family, I just felt numb. I wasn’t offered any psychological support.”
Nicola, research participant
Without a decent level of evidence of the impact of MND on a person’s mental health, it is increasingly difficult to get new, or even existing types of therapy adopted into mainstream statutory care.
The Pixel Fund is helping us to support a research project that we are funding in conjunction with the National Institute for Health Research (NIHR) – the COMMEND study.
This research study will focus on Acceptance and Commitment Therapy (ACT) and assess whether adapted ACT, along with usual multidisciplinary care, improves psychological health and quality of life for people with MND.
“Ultimately, we hope to demonstrate that Acceptance and Commitment Therapy (ACT) has a positive and cost-effective impact for people living with MND, which would provide the evidence base to support the roll-out of the intervention across the NHS – and perhaps in other countries as well.”
Dr Brian Dickie, Director of Development and Research,
On behalf of MND Association