Every 3 months, a member of the Council of Management writes a blog for the Epilepsy Action website. These blogs provide a topical insight into the work of the Council, who the Council members are and what they’re doing.
2 November 2016, by trustee Richard Chapman
In this blog I’d like to pick up on some of the themes our dhairman, Ian Walker mentioned in his opening blog.
I think of myself as fortunate in that I have been seizure-free now for almost twenty years. It took some time to get there as I was first diagnosed almost fifty years ago. But I do try to remember what life was like before I became seizure free in the discussions that the trustees have about the future direction of our Association and what its priorities should be. So many of those who are our members and supporters and those who come to us for advice and information regularly face difficult, significant and often life changing challenges in their everyday lives, the impacts of which often impact on friends, families and cares as well. It’s really important that we do our best to provide the support they need and use our influence to encourage society to have a much more sympathetic view of the condition. That is why in preparing our new strategic plan for the next five years that we listened carefully to what people told us were the important issues for them.
The plan, which the Council approved at its October meeting, will be published shortly and will appear on this website soon. I would encourage you to take a look. It’s a very ambitious plan but we hope it’s also realistic. As Ian said, it will be a challenge to deliver it because it depends upon us being able to raise more funds in what is currently a less than favourable economic climate. Added to this, new fundraising requirements will also have an impact. That’s not a gripe. The charity sector should be properly regulated. It is just unfortunate that the activities of a few high profile charities have resulted in additional regulation for the sector as a whole and will increase costs for the many who played by the rules. We have always endeavoured to comply with best practice and will continue to do so. We don’t cold call or share people’s data without consent. That’s not just because it’s the right thing to do, it’s also because we want people who contact us to have confidence in us. We can’t put a price tag on our reputation.
At the end of the day, money is important to us because it helps us to do more things. One of the difficult things that trustees have to do is to make choices as we can’t fund everything we would like to do. One of the other things that will be a game changer for us moving forward will be encouraging more people to become involved in our work. Our volunteers and supporters are a vital part of what we do and we would be lost without them. I have seen a lot of changes during my time as a trustee with our Association but there is still much to do. I hope our new plan will strike a chord and will encourage people to join us in building a better society for those affected by epilepsy.