Joining Epilepsy Scotland as a trustee

Epilepsy Scotland board member, Celia Brand, explains why she joined Epilepsy Scotland as a trustee and what she would say to someone who is looking to become a trustee.


What particularly interests you about Epilepsy Scotland?

I have known about and referred many patients and families to Epilepsy Scotland over many years.

I love the fact they support young people, children and families following a diagnosis of epilepsy or when epilepsy becomes more challenging to families.

I think it is great that they have / are a different source of information and people to talk to not just medical clinicians.

It is a different level of trust and allows a different thinking sometimes acceptance with families and people with epilepsy.

I also very much appreciate the work done to educate other sectors in epilepsy awareness and administration of emergency medication as without this many areas would be unable to be as effective in caring for people with epilepsy, sometimes very complex epilepsy.


What is your background in terms of skills and experience?

I am a paediatric epilepsy nurse consultant, working purely in paediatric epilepsy for the last 19 years and for 10 years before that within acute paediatric neurology in Sydney, Australia, where my interest in neurology in children was piqued.

I now have a master’s degree in epilepsy from Kings College London and am a nurse prescriber. I have independent nurse led clinics within the NHS and prior to COVID-19 within many of the specialist educational schools around the Lothians.

My role covers many things such as guideline development, strategic planning, participating in development of courses eg within the BPNA, teaching within third sector providers such as sleep Scotland, wider teaching – children, young people and their families as well as those who care for them, undergraduate nurses, post graduate nurses about epilepsy.

I also grew up with my uncle who had significant epilepsy during most of his life and a resultant learning disability.

He used to have focal seizures with altered awareness which evolved into generalised tonic / clonic seizures and these were often frequent events when he visited us most weekends.

He had been institutionalised from his mid teenage life and the effects of this were often evident in his behaviour especially pre and post seizure.

This is where I learned to be calm, assuring and not to be afraid of epilepsy although there is always a point where fear can creep in.


What are the main responsibilities of being a trustee?

For me, to be vigilant that Epilepsy Scotland is being what is needed for those who rely on its help and advice. To ensure we are open and honest about what the charity does and plans to do.

Also, to ensure the training being offered is relevant, up to date and accessible to those who need it.

To be understanding of what the charity is there for and to be responsible for being a part of decision making both for the board and the charity.


What is the trustees’ role in relation to the Chief Executive?

To offer support, advise and if needed a helping hand or a halting hand, perhaps just another view point.

Support the Chief Executive to manage the work of the charity well and within the boundaries of OSCR without taking over.


How do you make sure you are being effective / doing a good job both individually and as a board?

I have found this difficult but through discussion and communication with other board members and the Chief Executive am finding my way.

I am a reflective thinker and like time to mull over things before making decisions and sometimes don’t feel the need to be overly talkative in meetings but that does not mean I do not care.

I will give my view if different as required otherwise consider me supportive.


What are the advantages of having a trustee board made up of people from all sorts of backgrounds with different skills and experience?

I think this gives different viewpoints and understanding to epilepsy and how trustee boards work.

What works for some does not for others and we should be trying to engage with all who experience epilepsy to ensure the charity can benefit from everyone’s experience and also ensure the most important work is covered for those we are aiming to help.

We need people with experience of epilepsy, clinical knowledge of epilepsy, law, employment law, finance, managerial skills to name but a few and there is no one person who can do all.

I am certainly no accountant or law expert!


What’s been the best thing about being a trustee so far?

Getting to know the team more and learning from others experiences and work backgrounds.

It is stretching me and challenging me to look outside my little bubble of knowledge / expertise and look at a bigger picture in something not part of the NHS and learn.


How hard has it been being a trustee of a charity during the COVID-19 pandemic?

Not too hard I think. In many ways I feel COVID has been of benefit to me being a trustee.

Although it is nice to meet together over a cup of coffee and more social, I feel we have grown together, learning how to work in a virtual world.

It has been worrying that economically the charity might suffer as lockdowns continue and the world as we know it has changed but the need for this charity remains and life will recover.


What would you say to anyone who was looking to become a trustee?

Please talk to us! We would welcome your expertise and knowledge!