Emma

Emma

Hi, my name is Emma, I live in Newton Abbot, Devon.

I sadly lost my youngest son Stanley to a rare genetic condition called Tay-Sachs Disease in June 2019 when he was just four years old.
My older son, Fynn is now thirteen years old.
I work for The Cure and Action for Tay-Sachs Foundation as a family support officer, supporting families who have children with life-limiting conditions, Tay-Sachs and Sandhoff disease.
I also run a small charity in Devon in memory of Stanley called The Stanley Beau Foundation, which provides holidays to children with life-limiting illnesses and also equipment grants for much-needed equipment not available on the NHS.
I am extremely passionate about sharing my lived experience of:

  •  Caring for a terminally ill child with complex needs.
  •  Caring for siblings.
  •  Palliative care.
  •  Caring for a child when/after they die and the choices families can have around this.
Sue

Sue

Hi… I am Sue and I worked with Laura Phipps on the NHS England “Voices Transform and Inspire Change” campaign. Since then we have formed the Expert Parent Carer Voice and have gone from strength to strength. I am mum to my late daughter Simone, who died in 2021 aged 22. Simone suffered with multiple life threatening health conditions and required 24/7 care.
Since joining Laura and the SW Paediatric Palliative Care network I have spoken at both regional and national NHS events on the responsibilities of caring for Simone, complex Transition and the importance of relationships between families and practitioners. I continue to work closely with NHS groups including, The Children’s Transformation Program, South West Children’s Palliative Care Network and NHS End of life network .
I have a close relationship with Together for Short Lives and joined their funding Panel in 2016 for Improving Transition and I am currently working with Great Ormond street Children’s Hospital on the OPTICAL project which aims to improve complex transitions from children’s intensive care to adult intensive care. I have worked with the Care Quality Commission for 9 years as an Expert by Experience.
I live on Dartmoor and draw from nature to deal with feelings of grief and loss.
Amy

Amy

My name is Amy and I live in Torquay, Devon. I am a bereaved Mum to my little Boy, Frazer who passed away at the age of 9 and a half from a Degenerative Neurological condition called CLN2 Battens Disease. I live at home with my oldest son, Alfie who is now 14 and my husband, Chris. We have two dogs and a cat!

Areas of Expertise and Passion…
My aim is to carry Frazer’s legacy forward and to continue all the trail blazing and pioneering that he brought about locally and hopefully, regionally.

I am keen to offer support and expertise in the areas of:

▪ Children and Young Peoples education.
▪ SEND and delivery of additional needs support in educational settings.
▪ Delivering teaching and learning opportunities for professionals and other parents.
▪ Palliative End of Life Care at Home.
▪ Children’s complex needs and how to care for a child with a life limiting condition.
▪ Multi-disciplinary team coordination and management.
▪ Trauma.

My Experience with Childrens Palliative Care…
I have a broad and depth lived experience of caring for Frazer who was diagnosed at the age of 5. My experience covers all areas of caring for a child with complex and multiple healthcare and educational needs. It also covers managing the team around my son, advanced care planning, end of life and the coordination of the multi professionals that were involved. I managed every aspect of Frazer’s care from a health, social and educational perspective and as such he was able to pioneer new services and change existing policy. I also have experience of how siblings are impacted by this environment and the wider effect this has on a family and the place that trauma holds on a journey such as ours.

Dan

Dan

 I'm Dan, sometimes comment writer for inews.  I have been a keynote speaker at Together for Short Lives national conference.