The Peninsula Parkinson’s Excellence Network (PenPEN), supported by PenCLAHRC, have worked with Parkinson’s UK, Parkinson’s experts and researchers at Plymouth University to produce the first information resource for teachers and professionals who interact with young children whose parents are affected by Parkinson’s disease.
The resource, consisting of a film and accompanying text with links for useful information, aims to explain how teachers and other professionals can help children in this situation and can be accessed for free online.
Leading the project from Plymouth University Peninsula Schools of Medicine and Dentistry is Dr Camille Carroll, an academic neurologist who specialises in Parkinson’s and is supported by PenCLAHRC.
Called “Listen to my Thoughts”, the film follows the experiences of Jess, a primary school pupil whose mum has Parkinson’s. It shows some of what she has to deal with at home and at school, and ultimately indicates the mutual benefits when she, her parents and her teacher communicate and understand the enormous impact Parkinson’s has on life at home.
As more people have children later in life, so the lives of a greater number of very young children are starting to be touched by a parent with a medical condition, usually (but not exclusively) associated with age.
This is a relatively new phenomenon and one for which the many professions that interact with young children are unprepared - a primary school teacher may misinterpret a child's worry and lack of concentration as unruly behaviour, for example.
A group of families faced with this issue have joined forces with Parkinson's UK and Parkinson's disease experts from the University of Plymouth, to produce the film and supporting material to help such professionals understand the issue. It is the first time that it has been addressed in this way.
The catalyst for the project and project lead is Lyn Fearn, who has Parkinson’s disease and who is mum to Mael, 12 and Amy, eight. Lyn said:
“The discussions were very much about the disease and older people. I thought ‘what has this got to do with me?’ and actually asked that question. The conversation then moved to my family’s emotional and psychological experience and how teachers, doctors and other professionals just didn’t understand our situation. I thought it was important that my children, and children like them, should have a voice and support.”
The film includes quotes from Mael and Amy about their experiences, and an interview with Helen Young, a teacher at Lewannick Community Primary School in Cornwall. It has been featured on leading UK BBC programme The One Show and the Today show on BBC Radio 4.
As a relatively newly recognised phenomenon little has been put in place to support young children who are struggling with the ramifications of a poorly parent and the complex issues and problems Parkinson’s disease imposes on a family. Families under stress, because of the condition, have little support from teachers, care workers and other professionals who have not been appropriately briefed to understand their needs.
Barbara Williams, Director of Support & Local Groups for Parkinson’s UK, said:
“For every one of the 127,000 people who have Parkinson’s in the UK, there are many loved ones who also have to get to grips with the implications of having someone close to them living with a progressive neurological condition. We welcome the focus of this film highlighting the impact that the condition has on children.
Access to high quality information and support is critical for people with Parkinson’s themselves, but also families, friends and carers to ensure that questions can be answered and fears quashed. Parkinson’s UK has resources for young children to help explain Parkinson’s and for teachers and others to use to raise awareness and understanding.”
Parkinson's is a degenerative neurological condition for which there currently is no cure. The main symptoms of the condition are tremor, slowness of movement and rigidity. Most people who get Parkinson's are over the age of 50 and as parents have children later in life so the risk of developing the disease while their children are still quite young increases.
Listen to an interview with Lyn Fearn and her son Mael on the Today show on Radio 4.