Laura Phipps, Children’s Palliative Care SCN Manager, NHS England – South West:
‘ I have had the privilege of working with the expert carer parent voice group for just over two years now and I am inspired each time we do a piece of work together. This group have helped drive our regional work in paediatric palliative care on transition, trauma informed care, 24/7 provision and choice on place of care, introducing the mind map, workforce education and storytelling to name but a few. Throughout this work they have kept us grounded and child focused; offering an invaluable perspective of lived experience that cannot be replicated. This group are a marvel of brave, articulate and compassionate parents, they hold the child at the centre of all contributions they make; a powerful reminder to us as decision makers to always seek what matters most to families. Professional throughout, their collective skills and experience enable them to offer a vast offering of insight; and we have a duty to enable the voice of the child and their families are heard in all arenas and in all that we do. A big thankyou to you all.’
Charlotte Ives, System Transformation Lead, CYP Transformation Programme, NHS England South West:
‘The Expert Parent Carer Voice group continue to be an invaluable and inspirational influence on the regional efforts to improve the quality of care and experiences for families with children and young people experiencing life limiting, palliative and end of life care. They have kindly and bravely shared their personal experiences as parents and carers. Providing insight into the complex world they had to navigate through the use of a ‘mind map’ (Dan McEvoy & Sue Ben-Abraham). This incredible resource is now used across many events, platforms and meetings, to help other carers and professionals understand the complexity of care and support and how improvements such as integration across services, can radically improve their experiences and outcomes. We are truly grateful to all of the Expert Parents and Carers for their support, collaboration and leadership – they are setting the bar for how we need to work in collaboration with experts by experience across all areas of health and care’
Kath Rooksby, NHS England South West, Personalised Care and End of Life.
’Recognisng the value and meaningfulness of lived experience really comes alive when we hear a story, journey, outcome of someone’s life. The impact of what went well, what could have been different, the timing, the questions, the feelings. How can health and care professionals know this vital information if we don’t ask and engage with people? Thanks to meaningful patient and public voice of parents and carers who care for now and also have sadly cared for and lost a loved one, our health and care services can be in a better place of knowledge, wisdom and expertise. Our health and care services can be in a better place to shape services that matter most to those that need them. Thank you to all that play a part and particularly thank you to Sue Ben-Abraham for teaching me so much and sharing so much experience of caring for her late daughter Simone. The journey of sharing lived experience is a brave journey. The Expert Parent Carer Voice forum is the enabler to effect positive change, thank you for being!’