Renata Blower

Campaigner, Public Speaker, and Writer in the United Kingdom

Renata Blower

Campaigner, Public Speaker, and Writer in the United Kingdom

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My mother told me that as a child she rarely worried about me. She said that I always knew my own mind, and it didn't matter what the other children all did, if I believed something was right, I would follow my instinct and not the crowd.

It also meant that she knew that if I got in trouble, it was entirely my own doing.

It turns out it's also a bit of an advantage when you end up being the parent of three biological children and one foster child all with additional needs which include ASD, ADHD, Dyspraxia, Anxiety, Developmental Language Disorder, complex medical needs, physical disabilities, rare disease/ undiagnosed genetic disorders and trauma.

This means that over the years I have worked with a wide range of professionals from health, social and educational services. As a result I have a good understanding of what good practice looks like and the value of co-production.

Life hasn't always been easy, in fact, often far from it, but I have always felt that my energy is best spent trying to solve the problem rather than simply complaining about it. I also knew that if I was struggling, then other people who aren't in a position to fight their corner must be too.

Over the last 15+ years I have juggled family life with working with local authority services, businesses, academic institutions, health services, children's charities and even the government. I also sit on various advisory boards.

I am immensely proud of everything that I have achieved so far, none more so than bringing about the world's first nurse for undiagnosed children at Great Ormond Street Hospital.

In 2014 I was delighted to be invited to become a Fellow of the Royal Society for Arts for my work towards improving services for disabled and medically complex children and to be nominated for a WeGo health award.

I am co-director of Special Needs Jungle, a CIC dedicated to providing information for parents of children with special educational needs, disabilities and medical conditions and those working with them. In 2020 we won the Your UK Parliament Award for volunteers of the year and regularly work with government Ministers to ensure issues facing families of disabled children are heard at national level.

I am also a co-director and rep for Herts Parent Carer Involvement, the parent carer forum for Hertfordshire. I was recently awarded the Herts Community NHS Trust ‘Leading Lights’ award for my work helping to develop a care coordinator pilot to support families of children with complex needs.

  • Work
    • Special Needs Jungle