Mark Brown of the Younger Parkinson's Alliance, and Huw Morris, consultant neurologist, talk about how the Young-onset Parkinson's Best Practice Statement will aid younger people with Parkinson's to get the right diagnosis, treatment, information and support at the right time.
Although it was determined back in 2009 that 1 in 20 people with Parkinson's has symptoms under the age of 40, little has happened since to fully dispel the perception of it being an older person's condition.
Of course, a far greater number of people are further along in their lives when they present with symptoms – so it's understandable that much of the guidance has this group in mind. But it's far from uncommon in younger people, and ensuring health and social care provision reflect their needs is vital.
That's why this best practice statement has been developed. It pulls together all the research, professional expertise and insight from people living with the condition to equip the healthcare community with tools to address the particular set of challenges younger people can face.
For example, diagnosis is far more likely to be delayed. There are many accounts of symptoms being initially dismissed as a frozen shoulder or stress – Parkinson's often not being considered at a crucial time when so much can be done to slow progression and steer patients towards support that suits them.
There are all the other factors that are often at play at this stage in life – children being raised or considered, mortgages to pay, careers being planned. A diagnosis of Parkinson's can be devastating and terrifying, especially when compounded by the mental health symptoms of the condition itself.
Recognising these factors and being able to offer or signpost to the right support can truly make all the difference.
The good news is that there's a growing and ongoing commitment to meeting the needs of younger people among clinicians. The UK Parkinson's Excellence Network has created a hub in which the health and social community itself showcases and drives better care.
Research continues into understanding this complex condition and how it can be managed and curtailed. More is needed if we're to understand and develop the best treatment for young-onset Parkinson's.
But for now, the point of diagnosis remains the point at which a person's path is set. Getting this right, discussing treatment options at the relevant time and pointing towards support that can make a positive difference to the person’s outlook is crucial.
We hope this best practice statement holds everything you need to diagnose and treat younger people, and support them to live life to the full.
Mark Brown is the Chair of the Younger Parkinson's Alliance.
Dr Huw Morris is Consultant Neurologist and Professor of Clinical Neuroscience, Royal Free Hospital; and Professor of Clinical Neurosciences; Clinical and Movement Neurosciences, UCL Queen Square Institute of Neurology.