March 2018 AGM & conference: Epilepsy after Brain Injury

It was great to report on yet another busy year for ABIL and the continuation of quarterly conferences, which are always well received. ABIL has also been involved in contributing to the Mayor of London’s Health Inequalities Strategy Consultation (see http://www.abil.co.uk/abil-responds-mayors-consultation-draft-london-health-inequalities-strategy/) and we await the outcome of this later in 2018. In addition, ABIL has actively supported UKABIF and the All Party Parliamentary Group (APPG) for Acquired Brain Injury, attending meetings at Westminster and engaging with MPs. The APPG has gained a fair amount of traction since it was officially launched towards the end of 2017 and Chris Bryant MP, who Chairs the Group, is doing so with commitment and enthusiasm and has managed to keep brain injury on the political agenda.

ABIL would like to thank Irwin Mitchell for their ongoing support. Thank you also to all attendees and presenters over the past year and the Executive Committee for all the hard work they put in. This year the Committee says goodbye and thank you to Leigh Andrews for her contribution to ABIL and welcomes Louise Kerr and Eky Popat.

CONFERENCE: EPILEPSY AFTER BRAIN INJURY: Epilepsy is a condition that can commonly develop after brain injury but can perhaps get overlooked as other difficulties present and take precedence. People with epilepsy often feel vulnerable when out and about, particularly if they still have seizures. It was an area that ABIL had not covered in detail at previous conferences, so it was good to be able to dedicate a conference to this and to get different perspectives on approaches and resources.

Laura Middleton-Guerard from Irwin Mitchell got the conference underway with a   ‘Epilepsy and the Law – A Brief Overview’, addressing the legal framework, legal consequences and legal issues. Laura talked about the aim of damages in personal injury claims and assessment of additional needs in relation to epilepsy; the impact on life expectancy; fluctuations over time as regards the risk of epilepsy; and lifelong management.

Harriet Spencer (Epilepsy Specialist Nurse at Homerton Hospital) spoke on ‘Seizures – what are they? Treatment – medication and Problems. Safety and Lifestyle Choices’. Her presentation included an explanation of epilepsy and the likelihood of epilepsy for people with acquired brain injury. She explained how a seizure is an abnormal excess of electrical activity in the brain and how the type of seizure depends on where it occurs in the brain. Anti epileptic drugs (AED) are the main course of treatment and 70% of people will have their epilepsy well controlled by AEDs, although there are common side effects. Establishment of the right medication at the right dose can be a matter of trial and error. Harriet also focused on the importance of blood tests, women’s issues and bone health. Also, she cited safety and risks, triggers and lifestyle and care during a seizure.

Richard Symes (Member of Headway East London) and Amanda D’Souza (Clinical Lead, Headway East London) said that about a third of the Members at the day centre have epilepsy as a result of their brain injury. In the presentation, Members spoke about, and gave examples of, the difficulties and sensations that can be experienced. Richard, whose epilepsy is now well-controlled, likened his experience of having a seizure to a silent, Predator-like sensation https://www.youtube.com/watch?v=4OYpQq0tfuw. The importance was stressed of learning from people’s experiences in order to be able to provide space and support in the right way.

Lisa O’Brien and Lucy Wells from Independence Homes – who provide supported living and residential care – spoke on ‘Gaining Independence and Moving Forward after Brain Injury’. They referred to the challenges involved in providing a service that has the right environment to promote independence and remains supportive without disempowering the individual. Part of their approach was around carefully chosen locations within vibrant community settings, where the individual would be able to access a range of opportunities, including education, work and leisure activities.

Last but certainly not least, we welcomed Alba De La Gandara Garcia, Danny Anderson and the delightful Cassie from Support Dogs, which is a national charity dedicated to increasing independence and quality of life for people with various medical conditions. Alba is a Seizure Alert Programme Instructor, Danny the fund-raising manager and Cassie a seizure alert dog in training. The presentation focused on the wide ranging support these dogs can provide and how a seizure alert dog can change the owner’s life completely and give them independence that might not otherwise be possible.

Tony Hart – Chair of ABIL

The programme and presentations can be downloaded here:

ABIL Programme 20.03.18 (AGM)

Epilepsy and the law Laura Middleton-Guerard

Treatment, Risk and Lifestyle Choices – Harriet Spencer

Experiences of Living with Epilepsy – Richard Symes, and Amanda D’Souza

Gaining Independence and Moving Forward After Brain Injury – Lisa O’Brien

Training Epilepsy Seizure Alert Dogs – Alba De La Gandara Garcia