I’m a PR and external affairs consultant and, with your support, I could assist Epilepsy Action’s Council of Management using my:
- campaigning expertise;
- fundraising skills; and
- own experience of epilepsy to raise awareness.
I’m committed to supporting Epilepsy Action’s local branches, groups and individual members’ volunteer efforts. I value the new Council members’ blog, Facebook pages and helpline. I welcome its work with other charities on disability benefits and the Seize Control campaign.
My interests include: improving seizure diagnosis, tackling stigma, putting patients first and developing services for those who care for people with epilepsy.
I myself developed epilepsy 20 years ago. My complex and generalised seizures tend to occur twice a week during the day and are accompanied by near nightly nocturnal sub-clinical ones. I currently take five anti-epilepsy drugs as well as previous drugs recommended by my consultant. But none stopped these seizures. So I have to deal with a loss of consciousness during my seizures and my medication’s side effects plus low moods, tiredness, the suspension of my driver’s licence and diagnosed poor memory. My treatments have included MRIs, in-patient telemetry, an intracranial EEG and I am now on a ketogenic diet trial.
My epilepsy charity support started with a charity walk up the Andes and participation includes attending several Epilepsy Action branches in London, volunteering for its digital stories filming and helping it secure Parliamentary speakers for the All-Party Group on Epilepsy.
My diverse work experience whilst managing my epilepsy includes working for the BBC when not receiving in patient treatment – for instance during last year’s general election. I am also proud also to have led the charity Nesta’s external affairs awareness-raising about putting patients first across the NHS, health campaigning for the MMR vaccine and improving access to malaria treatment.