Family Advisory Board (FAB)
In 2018, we established the Family Advisory Board (FAB), which consists of parents and other adult family members of children and young people with life-limiting conditions and complex healthcare needs.
The FAB advises on the development and co-ordination of Public Involvement for the Centre, and provides input on the Centre’s research. Normally the group meets four times a year, but during Covid they started to meeting online once a month and this has continued.
Below you can find out about some of the parents that contribute towards the Family Advisory Board, and what it means to them to be involved:-
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Brian Deehan
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I am married with a grown-up daughter and three grandchildren. My son, Chris, passed away in 2018 after a 26-year battle with Muscular Dystrophy. I am a Chartered Public Finance Accountant. Following a Public Sector Audit career in the UK and Overseas, I work as a Partner in the family contract interior design business. Over the past 30 years, I have, and continue to hold, various positions within the neuromuscular community. I was also a Lay Member, for several years, of Independent Reviews into complaints involving the NHS.
I became involved with FAB a year ago when I discovered the important work being done by the MHRC after being asked to assist with a grant application. I wanted to represent the neuromuscular community, and to assist wherever possible in improving services for all children and young people with life-limiting and life-threatening conditions via quality research. |
Helen Burns
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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.
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Dave Durbin
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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.
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Jane Morgan
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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.
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We are always looking for new members to join the FAB.
You don’t have to attend the FAB meetings or live in Yorkshire to get involved, and you don’t have to be listed on our website or have your name shared with others if you become a member.
If you are interested, you can contact us here at the Get Involved page, or by emailing Dr Julia Hackett, the MHRC Public Involvement Lead, at julia.hackett@york.ac.uk.
