Family Advisory Board (FAB)

I live in Leeds with my husband and two daughters. Our youngest daughter, Emily, has a GNAO1 genetic mutation, which causes severe epilepsy, and profound and multiple learning disability.

Our family have benefited from respite and support from Martin House hospice for several years, so I welcomed the chance to be involved in the Martin House Research Centre, and contribute in any way I can. I was previously a PPI member for the Yorkshire and Humber Genomic Medicine Centre. I like reading and walking in my spare time and volunteer at Emily's school when possible.

I joined the FAB as a recently bereaved parent to be able to share some of what I have learned over the past 13 years and hopefully help to inform decisions that will help other families in a similar situation. My son had global developmental delay and further complications based on a lately identified genetic abnormality. We adored him and spent a lot of time working out how we could give him the best opportunities to enjoy his life. I am married with a 15 year old daughter and a one year old whippet, and we enjoy leading an active lifestyle.

I have always tried to give something back, having had such great support throughout my son’s life. I have been a governor at his school (Specialist Inclusion Learning Centre) and over the years have done several fundraising events, including dragon boat racing and the National 3 Peaks Challenge to raise money for the Leeds Teaching Hospitals, Hannah House in Leeds, and the school.

We have always worked well as a team with the healthcare and educational professionals, and have always pushed to understand the situation and ensure we were doing the best we could for our son. This was sometimes challenging and difficult, and took determination and perseverance, but we look back and feel we did everything possible to allow him to achieve his full potential and be happy. If a piece of equipment didn’t exist, I generally tried to create something that would be helpful rather than putting up with things the way they were; we had lots of constructions and contraptions around our house! I work locally as a Senior Continuous Improvement Manager, coaching people to work together as a team to find ways to reduce waste.

I am a bereaved parent of the amazing Callum who passed away in 2015, a healthcare professional for nearly 2 decades, and served a lay member on the NICE committee that formulated the Children's End of Life guidelines in 2015.

I became involved in the FAB to honour Callum's memory, give back to those that supported my family, and hopefully find a way to make the palliative care process softer for those that find themselves a part of it.