Grainne Saunders

I have been an active Trustee of the West Sussex Parent Carer Forum since 2016. The ‘Forum’ is an independent charity that works to ‘inform, equip and empower parents and carers of all disabled children (0-25)’ mainly by working strategically with statutory organisations and commissioners to help bring real parental experience to the table and help deliver and design quality and good value services. The Forum believes quite simply we are #BetterTogether!

As well as being Trustee of the Forum, I volunteer much of my time to champion work with health partners and raise the profile of preventative and good quality health services for children, particularly for our most vulnerable. 

I am an active member of many local joint workstreams including the focused work for children who have complex health needs, Neurodisability pathway work, joint working around mental health and wellbeing, and transforming care.

It’s been a privilege to promote and champion some of the fantastic initiatives and projects which promote and keep (disabled) children healthy including the Pace Setter Award, Special School Nursing Tool, Therapies in Schools project amongst many others. 

I love person-centered approaches to helping disabled children and their families plan for their future and I am an Associate with Inclusive Solutions. 

I love to deliver the (well-respected) Expert Parent Programme (EPP); a suit of learning tools that equip and support parents of children with health needs (including mental health) learn skills to work better and more effectively with the health professionals involved with their child.

In the (very distant) past I worked as a Postdoctoral Research Fellow, working as a molecular biologist to help develop a better vaccine for tuberculosis to BCG.

I volunteer with the Guides. I am married and have two children (where my youngest has a learning difficulty most likely due to her unique chromosomal disorder). 

I am extremely passionate about equal access to good quality healthcare especially for vulnerable disadvantaged groups including disabled children.

In the past I have been a parent representative on the Advisory Board of the Foundation for People with Learning Disabilities (FPLD), worked as an Independent Supporter helping families change from a Statement of Special Educational Needs to the current Education, Health & Care Plan system and I have also worked as a Portage Home Visitor for children with complex disabilities under five.

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