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Jane's Story

My Involvement With PenCRU- Finding A New Direction

I have been a member of the Family Faculty for a number of years now. I remember going to my first meeting and being blown away by the special space that was created where the parent carer’s voice was been sought and valued. It was the first meeting of the healthy parent carers project and I felt able to speak about my reality with people who understood completely because their story was similar. One of the hardest things to deal with is the feeling of powerlessness that comes with trying to protect your child with special educational needs, As much as you want to you can’t change the world for them or take away their daily struggles. In that room that day I felt I had found a group of people who wanted to try.

Being part of the Family Faculty has given me a different focus and a place where I am more than “just a parent”. The philosophy of the team is that we are the experts and our voice, our experiences, can be used to influence the lives of disabled children and young people in the future.

Two years ago it became apparent that the osteoarthritis in my left hip couldn’t be ignored. My life became more and more restricted and uncomfortable and my confidence hit an all-time low. The Family Faculty offered support and a place to go where I felt useful and important. I am lucky enough to live opposite the offices they call home so it is easy for me to get to meetings. When I had my hip replaced last year the St Luke’s Campus was my first choice for rehab. I would walk slowly round the quad on my crutches and think about my future.

I decided to reach out to the Family Faculty and see if there was any engagement work I could do while their Family Involvement Co-ordinator was on maternity leave. My skills and experience from my previous life (before my job as parent carer) were around participation. I have a drama degree and post graduate qualification in Community Theatre Enterprise. I used to work with groups helping them to build their confidence and find their voice.

To my delight the staff encouraged me to get more involved in looking at the training needs of the Family Faculty. I conducted a small qualitative research study and with Dr Kath Maguire from Exeter University’s PenCLAHRC team developed some workshops to explore further how to improve the partnership working between researchers and Family Faculty members. I was coming into ‘work’ once a week and remembering my past professional life. As I recovered from my surgery I was finding my feet again and creating a new direction for myself.

One of the activities we did as part of the two workshops involved using giant wooden bricks to look at the barriers that prevent participation. It is an exercise I first used thirteen years ago and it was fantastic to see that it hasn’t lost its power or ability to help people actively engage with a problem and try and find a solution.

The PenCRU Family Faculty is a place where you are treated with dignity and respect. This is a rare and precious thing as we are so often put into the role of a ‘difficult’ parent. Thanks to support from PenCLAHRC and PenCRU, I have added a new qualification to my CV. I am the proud owner of a Level 3 Award in Education and Training from City and Guilds which means I can officially call myself a trainer. I have been through a process of adding to and validating my past experience and removing some of the barriers that stood in my way. I feel I am ready to be more than “just a parent” and go out into the world as a professional and show others just what I am made of.

Please do contact us if you would also like to share your experience of being involved with PenCRU!