Mary is mum to three children one of whom is disabled. Although she knew her disabled son had difficulties from a very young age, she struggled to get this recognised through the health system. This led to challenges in having needs clearly identified and getting the right support in place in time for preschool and primary school. She had to resort to creating care pathways herself, paying for the right assessments and to use of Tribunals which is not what she wanted to do. One of her other children also had an undiagnosed health condition that greatly affected his learning and this also led to creating her own pathways to ensure his health needs were identified and met. This led to her involvement through the local Parent Carer Forum in seeking, through participation and co-production, to ensure better pathways and experiences for children, young people and their families with SEND. She also worked through the Forum during Aiming High for Disabled Children to ensure that all the short breaks funding was allocated and made a difference to the lives of families.
Mary was then invited to set up the NNPCF in 2010 and became the NNPCF Steering Group member for London. London is the biggest region with 32 Forums and over time another Steering Group Member was elected reflecting the size of the region. She works closely with London Forums and all partners, including London Councils, to ensure better outcomes for children and young people and their families. She is currently working with London Forums to develop and strengthen their regional presence.
Mary has also worked nationally in co-production at a strategic level to seek solutions to problems she has seen locally and regionally, including as:
- Steering Group member on the James Lind/BACD Research Prioritisation Project (2012-2015) leading to national research priorities for neurodisability – www.jla.nihr.ac.uk/priority-setting-partnerships/childhood-disability
- Steering Group member for Disability Matters, led by the Royal College of Paediatrics and Child Health, including parent author (Caring for Parent Carers Matter) and parent editor. Disability Matters is a free resource for all sectors to aid understanding and reduce fear of children and young people with disabilities – www.disabilitymatters.org.uk
- Parent representative on a national paediatrics group that created the first national Children’s Health Data Set, allowing for the first time the development of national, regional and local data about all the health needs of children to inform commissioning – www.england.nhs.uk/mentalhealth/2016/05/16/karen-horridge/