Julie Kembrey – Facilitator
I am the bereaved mother to Francesca and Josephine who died in their teens. I cared for my daughters, both of whom died from Sanfilippo, for 18 years. During that time I developed a range of nursing skills. This led me to understand the importance of a co-ordinated approach, parent and healthcare team working together, and the need for effective communication in order to provide the best care to those children with life limited conditions. I am a trustee of Jessie May Children’s Hospice at Home. I am founder and former parent lead of Jessie May Purple Group giving peer support to bereaved parents and carers. I have spoken at a number of national conferences and an international MPS Society Symposium.
Josie Pavey – Facilitator
I am mum to Billy-Rose, who lived for 6 wonderful months having been diagnosed antenatally with a condition called Hydranencephaly. I have worked in social health care all my life and as a training consultant for 12 years. I now use my personal and professional experience to provide training workshops for palliative care teams and baby loss support services. I have presented to a vast array of professionals working in this field alongside other care teams and now as Together We Matter. I have spoken at fundraising events for Children’s Hospice South West and recently helped develop and approve the new guidelines for Neo-Natal Palliative Care at Bath RUH. I am also a trustee for a disabled children’s youth club and advocate for disabled people’s rights and improved quality of life.