Gary Humphries (ACT, Liberal Party, Shadow Parliamentary Secretary for Citizenship) Share this | Link to this | Hansard source

I rise tonight to present to the Senate a report of an informal inquiry that was conducted in November of last year by the Parliamentary Friends of Epilepsy. This is an organisation of members and senators who are concerned about the effects of epilepsy in our society and who wanted to discover more about this debilitating illness through the conduct of an informal inquiry. So on 30 November here in Canberra that inquiry was held. This was an informal approach towards examining this issue, unlike the many formal parliamentary committees which look at such issues every day of the week. Our inquiry nonetheless was, I think, extremely successful. For example, the inquiry received over 360 submissions from organisations and members of the public. In fact, most of those submissions, 330 of them, were from individuals who had some experience of epilepsy either as sufferers or as families or carers of sufferers. It was quite extraordinary to see the level of interest in this inquiry.

The inquiry has produced a report with some recommendations. The inquiry was jointly chaired by myself, the member for Shortland, Jill Hall, and the member for Solomon, Damian Hale, on that day. It consisted in the morning of a series of hearings of particular witnesses, such as the Joint Epilepsy Council of Australia and some specialists who work in this area and so forth. In the afternoon there was a roundtable where all people who were present on the day were able to make a contribution as to the effect of epilepsy on them or their families. It was a very successful enterprise and it illustrated some issues with respect to this debilitating disease.

Epilepsy affects a very substantial number of Australians. It is estimated that worldwide there are 50 million people who suffer from epilepsy, according to the World Health Organisation. In New South Wales, for example, there are thought to be some 51,000 people suffering from epilepsy. The problem is that epilepsy is often either misdiagnosed or undiagnosed because it is the kind of illness that can be mistaken for other illnesses from time to time. There are high-profile sufferers. At a recent Friends of Epilepsy function at Parliament House last year, the footballer who captained Queensland, Wally Lewis, came and spoke about his experience of epilepsy and very movingly told about how he had to cope with that illness, which went undiagnosed for a long time.

The illness has been known since the earliest times. It was said that Julius Caesar suffered from it. It is a very difficult disease to deal with because it affects people’s cognitive abilities. At one point in time they might appear perfectly normal and the next minute they will be lying on the floor in a seizure. It obviously disturbs many people when they see this if they do not understand what is happening and it can be very difficult for people to cope with. It results in it being difficult for people with epilepsy to travel on public transport or even in taxis. It is very often difficult for people with epilepsy to obtain a drivers licence even if they have medication or other treatment which stabilises their condition. There is a scarcity of GPs and specialists with current knowledge of what exactly is the treatment for epilepsy and the way in which it might be remediated to help people with epilepsy cope with their condition. There is not enough training in medical schools and subsequently for GPs and nurses in this field.

There are around 630,000 minors in Australia who potentially have epilepsy and it is estimated that only three to four per cent of them have been correctly diagnosed. Of those, approximately 10 per cent have had or were likely to have seizures. With an ageing population, many more Australians over 60 are likely to be diagnosed as well. However, it is not a death sentence. Epilepsy occasionally results in death but need not lead to that. Drug regimes are often able to control the illness and appropriate training and care for people in the community can ensure that epilepsy need not lead to serious disabilities for people living in the community.

I seek leave to table the report of the Parliamentary Friends of Epilepsy into epilepsy in Australia.

Leave granted.

Thank you. One of the specific things which the inquiry looked at was a particular treatment called vagal nerve stimulation, or VNS for short. It was commented upon by a large number of witnesses as a very efficacious non-drug based way of dealing with this illness. A number of leading experts commented on its effectiveness in being able to control the incidence of epilepsy for people for whom anti-epileptic drugs had largely been unsuitable or unsuccessful. It is essentially a subcutaneous device which is installed surgically under the skin, a little like a small pacemaker, and can provide electrical signals or shocks that apparently affect the effects of epilepsy in a positive way. It is registered by the TGA and is also an approved prosthesis. But it has had problems in recent years because, whereas previously its implantation was capable of being funded under Medicare, since 2005 this has not been possible. It requires a specific item number under the Medical Services Advisory Committee process and to date it has not been able to obtain that item number. The Epilepsy Society of Australia, backed by a number of senior neurologists and neurosurgeons, have made two attempts now to have the process obtain a Medicare item number. Both attempts have been unsuccessful. As recently as late last year it was rejected.

There are a small number of publicly funded VNS implantations in Australia. For example, at the Mater Children’s Hospital in Brisbane in the Prime Minister’s electorate there is public funding for five VNS implants per year. Of course, with only five implants per year, not only does that have to deal with people in Queensland who might be able to successfully benefit from such an implantation, but there is also the question of people who have had previous implants whose batteries have run down and who now need to have the implants replaced. Five is clearly grossly inadequate. There was a very powerful case presented to the parliamentary friends inquiry that there needed to be public funding of some sort to overcome this problem. I do not purport, and the inquiry certainly did not purport, to suggest that the Medical Services Advisory Committee should have its medical judgment overborne by others, but there are other ways of dealing with this issue.

We are not talking about an expensive procedure, we are talking about one that costs about $1,000 per patient if the cost of the device itself, which is not very expensive, is covered by private health insurance. With the 40 or so new implants that might be required each year in Australia we are looking at a total cost to the taxpayer of something like $40,000 a year. That is not a great deal of money but it would make an enormous difference to the lives of people for whom no other treatment is available. These are people for whom anti-epileptic drugs have failed and for whom no other procedure is available. I would strongly urge the government to consider making that money available on the basis that there was near unanimous—in fact, as far as the inquiry was concerned, there was unanimous—recommendation for this procedure to be available to those for whom it was deemed to be clinically appropriate.

The committee itself recommends a number of things: more research; better education of practitioners, doctors and nurses; better pathways to assistance by Centrelink; and of course measures to reduce the stigmatisation that people with epilepsy tend to suffer by virtue of the nature of seizures that they might experience. All in all it was a very valuable inquiry. I thank those who took part in it. It was extremely heartrending to hear some of those stories, and I hope the recommendations put forward unanimously by members of the parliamentary friends will be considered seriously by the federal government.