Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

The Parliamentary Friends of Epilepsy is a very active group working in this parliament. The group was formed earlier during this parliament and is committed to publicising issues around epilepsy and trying to determine ways in which we can help people who suffer from epilepsy. For the benefit of the chamber, epilepsy is one of the most prevalent neurological disorders. It can be effectively treated but some people never really develop a stable situation with their epilepsy. So for most people it can be effectively treated but not for all. There are over 50 million people who suffer from epilepsy in the word today, and 85 per cent of them live in developing countries. In Australia we have an estimated 200,000 people with epilepsy, and it is believed that three times as many will have epilepsy at some time in their lives.

On 29 October, the Parliamentary Friends of Epilepsy had a breakfast at which Wally Lewis, the noted Rugby League star, football commentator and media personality, addressed us. On 30 October, we held a public hearing in the morning at Parliament House at which we heard from Mr Graeme Shears, from the Joint Epilepsy Council of Australia; Professor Mark Cook, a paediatric neurologist; Glenn Moore, the director of Aurora Bio-science; Dr Kate Riney and Dr Sophie Calvert, two Queensland paediatric neurologists; and Dr Christine Walker, who has previously addressed a breakfast at Parliament House. Dr Walker is a sociologist and represented the Chronic Illness Alliance. In the afternoon we had a roundtable discussion that included some of the groups that were present in the morning in addition to family members and people who suffer from epilepsy.

It was a unique experience. Some of the things that people said during the roundtable included, ‘Thanks for giving us a voice.’ They were very pleased with the work of epilepsy support groups in the community. We came to a realisation of the effect of epilepsy on siblings. We learned how difficult it is for people with epilepsy to obtain a correct diagnosis, of issues around MRIs and of the continual need people with epilepsy have in relation to changing medications and their side effects.

There is the impact of losing your driving licence and not being able to travel where you want to when you want to, having to rely on public transport or relatives. There is discrimination in employment and discrimination in education by peers and teachers. There is the dealing with depression, social isolation, loss of self-esteem and lack of public awareness. There are problems in obtaining information and dealing with government departments.

This was a unique experience. The Parliamentary Friends of Epilepsy will be tabling a full report in parliament in the new year. We will be making some recommendations. Epilepsy is an illness that has been misunderstood throughout the ages, but it is an illness that people can live with and still make a valuable contribution to our society. (Time expired)

Ms Anna Burke (Chisholm, Deputy-Speaker) Share this | Link to this | Hansard source

I would like to express my thanks to the Parliamentary Friends of Epilepsy. I know many of my constituents have expressed their thanks also.