Professor Orla Hardiman:

There are two things. We met the risk management part of the HSE and did a submission. There is a recognition in the HSE of the need for developing neurological services. We have put in a submission to build on the success of the Sláintecare headache programme which looks like it is going to happen. I understand it is in train now. There is a recognition now. If we can generate a good body of evidence and can demonstrate value for money and benefit then the reaction of the HSE is positive. Demonstrating the need, the roadmap and the evidence of benefit is what is required in the scheduled care programme.

We have been working very closely with them in building those requirements, and we have been getting quite good traction with them in this regard. As we said at the beginning, we do not expect all of this to get fixed in a year. This is a work in progress. A roadmap to where we should be, which includes the development of the neurology hubs and the recognition of the unmet need and the evidence base to support that, is really where we are at the moment.

With respect to this committee and the take-home from this engagement, I go back to the comment that was made earlier and was alluded to by Ms Rogers earlier, it is about recognising the role of the voluntary sector. We do that at a practical level in that we work very closely. Deputy Ward also referred to the work of MS Ireland. We do not integrate the voluntary sector adequately within the delivery of care, but we rely heavily on their resources to deliver services. I have been in my job for a very long time. To my mind, it is not acceptable that the essential services we provide for people are funded through fundraising and philanthropic support. We should really be recognising those services for what they are, which is an essential part of care. As I said at the beginning, the process of generating a service level agreement is very complex and done at a regional level. There is no overall overarching mechanism for a national service to develop a service level agreement with the voluntary organisation. That is a thing we could fix quite easily within the HSE in order to have a system whereby a voluntary organisation that has proven to deliver a high-quality service should be able to have a service level agreement, to support the service they are providing, through the Exchequer. That is very difficult to do at the moment, as Ms Rogers said. They are done through very local and regional services within the disability sector. For example, the IMNDA's service level agreement is with north Dublin but they have four nurses that provide an national outreach who are an integral and integral part of the motor neurone disease service. That is something we could fix quite quickly by exploring how we could do a national service level agreement, obviously with the important due diligence, evidence of appropriate use of the services, and appropriate governance structures. That is very doable and we have been exploring that also. That is a take-home message that I would like to put the committee: that we should be able to do that by way of integrating the voluntary section 38 sector organisations.