Mr. Peter Murphy:

Essentially, I wish to make the same point about respect. This is one of the key words I picked up from what Senator Dolan said. It is difficult to state that there is a culture of respect when, as we have heard from others, we operate in an environment whereby the contract is king and governs the entire relationship. It is very rare, if at all, that we will be questioned about the quality of the service we deliver, our plans for the future or anything that relates to the outcomes we deliver. Any or all of the relationship interactions seem to be based on observing the timeline, meeting the deadline or informing us that we forgot to enter data in a particular column. It is a technical relationship, as Mr. Cooper stated. Everybody wants to move to a position whereby our work in the future will evaluated not just in the context of the financial numbers but on the basis of the actual outcomes we can deliver. We try to deliver actual outcome information and data, but this is not necessarily something that is ever valued by the contracting partner.

We have heard a great deal about Sláintecare. As already stated, it is organisations such as Epilepsy Ireland that will play a key role in the delivery of Sláintecare. We are looking to move from a hospital-centric model to the timely provision of services locally. All of the neurological organisations and groups have a major role to play in this regard.

When one talks about the HSE, there is a significant difference between how organisations such as ours are viewed by our clinical partners. In our case, these are the neurologists, the epilepsy specialist nurses and the wider services. Those who work with us on a day-to-day basis see the value in how we supplement their services and, in certain instances, how we actually fill in the gaps, particularly in respect of epilepsy nursing and so on. They see the real value of our service, but one does not form the impression that there is any form of partnership approach. I wish that there could be a communications channel whereby our funders could engage withe the staff of the HSE with whom we work day to day.

Senator Dolan referred to advocacy and the significant role that organisations such as ours play in that. Ms Jones referred to speaking to employers and various others regarding rights, entitlements and all the rest. Another key aspect of advocacy is highlighting the deficiencies that are out there. It is organisation such as ours that highlight these issues. A recent example that this committee would be familiar with would be that of sodium valproate, a drug used to treat epilepsy that was brought to the attention of the Oireachtas through patient advocacy efforts.