I thank the committee for the opportunity to speak on this important issue. For more than 50 years, Epilepsy Ireland has been supporting and representing people with epilepsy and their families. Epilepsy is one of the most common neurological conditions, affecting 37,000 people in Ireland, including 10,000 to 15,000 people who live with uncontrolled, recurrent seizures. It can be a source of major and long-term disability, which is often hidden and stigmatised. It affects a person’s employment, education, independence, and psychological functioning.
Epilepsy Ireland receives section 39 funding, under seven HSE service arrangements, to provide a range of community-based services. These are delivered by a team of 11 community resource officers, all of whom work part-time. My colleague, Ms Jones, is one of our community resource officers based in Cork and will speak about our services in a moment. As the committee will see, these services are closely aligned with the goals of Sláintecare.
In terms of funding challenges, it is important to say that the difficulties we face are not unique. They are replicated across the spectrum of small and medium-sized community-based organisations. In our case, while the service in each HSE region is almost identical, the service level agreement, SLA, funding varies significantly from region to region. In no area does the funding cover the full cost of delivering the service. For example, in community healthcare organisation, CHO, area 2, which comprises Galway, Mayo, and Roscommon, the cost of providing our services is approximately €50,000 per annum but the SLA is for just €3,800. In 2018, the total national cost of providing HSE-funded services was €926,000 but total HSE income was just €784,000. As with other organisations, the SLA amounts are not negotiable. A series of annual cuts were implemented in the early part of this decade and these were followed by a long period of static funding. Today, this funding is 12% lower than it was in 2010.
This has been compounded by growing cost pressures. In recent years, we have worked to innovate and expand our services in response to changing service-user needs. As a result, the total number of service-user contacts nationally increased from 14,000 in 2014 to 20,000 last year. This, along with economic factors generally, has led to increases in virtually all direct and indirect operating costs, with the notable exception of pay, which remains at similar levels to 2009. The cost of maintaining quality assurance and governance standards such as the triple lock, which is vital to funders and all our stakeholders, also have significant resource implications that did not exist a decade ago.
Epilepsy Ireland, like other charities, actively fundraises to support our work, which extends well beyond SLA-funded activities. This work includes funding research, awareness activities, training programmes and advocacy. We accept and embrace the need to fundraise but, in recent years, greater demands have been placed on fundraising to cover HSE deficits while we also struggle to maintain wider organisational objectives. SLA deficits are averaging €160,000 per annum. Driven by this, and despite tight cost control, more than €600,000 of reserves were utilised between 2013 and 2017 to cover overall organisational deficits. For an organisation that operates on a total budget of €1.7 million per annum, this is not sustainable. What will happen when the reserves run dry? There has been no recognition of these issues by the HSE and no willingness or ability to address them in the annual SLA process. Deficits are reported in detail on the HSE’s annual financial monitoring return, which ties directly to audited accounts. However, some CHO areas do not allow deficits to be recorded on SLAs, giving the false impression that services are provided at break-even.
The current funding relationship between the HSE and voluntary sector organisations does not reflect the economic realities of operating high-quality, needs-based community services. Rather than continuing to innovate and deliver greater outcomes for people living with epilepsy, our primary focus in the current environment is on protecting existing services and ensuring resources are available annually to meet service level agreement deficits. A fundamental shift in the relationship between the State and the voluntary sector, as detailed by the independent review group, is needed if smaller, community-based organisations like Epilepsy Ireland are to deliver on our mission. That shift must begin with a recognition of the problems and a commitment to resolving them. Two IRG recommendations are becoming increasingly urgent, namely, the need to review jointly the broken SLA process and, second, the requirement to move towards full-cost, multi-annual funding. In short, non-profit should not mean loss-making.
I will now hand over to my colleague, Ms Niamh Jones.