Ms Gemma Fort:

We thank the committee for inviting us to attend today to consider the challenges facing our services in the context of the National Cancer Strategy 2017-2026. We represent the network of community cancer support centres, which has a footprint in 22 counties, serving 26 counties. Our centres are affiliated to the Alliance of Community Cancer Support Centres and Services under the national cancer control programme.

The national cancer strategy aims to meet the needs of cancer patients in Ireland. It was developed to address future requirements based on the expectation that the number of cases of cancer will almost double by 2045. This is mainly due to an increasing and an ageing population as cancer is a disease where the risk increases with age. The objective of the strategy is to ensure that cancer services respond to the challenges and the opportunities for future development, so that care is of a uniformly high quality across our population. It also identifies that there is now an increased awareness and demand for additional support for cancer patients after diagnosis, including survivorship programmes and psychosocial services. Greater integration with primary care and local services is required to ensure seamless patient pathways before, during and after treatment.

The strategy recognises the contribution of the voluntary and community sector in providing services to cancer patients, their families, and carers.

We are here as representatives of a number of those centres. Over the past 30-plus years, a significant number of similar centres has been established on a voluntary basis by local communities in recognition of the wider needs of those impacted by cancer. Service provision has been driven by the needs of many cancer patients for ongoing psychosocial support both during active medical treatment and for a significant period after that active treatment is completed. More people are living with, and living beyond, cancer. Recognition of the ongoing health and well-being needs of survivors, as well as the consequences of their treatment, is important.

The role of cancer support centres as part of the circular integrated patient pathway involving acute, primary care and community services is recognised in the model of care for psycho-oncology launched in May 2022 by the Minister for Health. We provide a wide-ranging choice of free services to meet individual client needs, including the provision of information, counselling, psychological support and survivorship programmes, as well as complementary therapies, exercise and relaxation classes, support groups, financial advice, and drop-in services.

In 2022, almost 11,000 individuals accessed their local cancer support centre with more than 80,000 attendances at individual and group services. Last year, approximately 12,500 people accessed services - a 16% increase on 2022 figures with a 20% increase in attendances at individual and group services up to 97,500. Therefore, the need is growing. All services are provided free of charge to our clients. As one in two of the population is likely to have a cancer diagnosis and with an ageing population, this figure will only continue to increase.

Several challenges face our sector and need to be addressed to ensure we have the capacity to be sustainable. The first is the projected increase in cancer cases and the requirement to address the needs of cancer survivors. Trends and projections for cancer incidence in Ireland, published by National Cancer Registry Ireland show that there will be a continuing increase in case numbers for cancer - potentially a doubling by 2045 even after accounting for population growth and ageing.

There is a 50% increase in the numbers of cancer survivors compared with a decade ago, and for the first time, the number of patients living after an invasive cancer diagnosis has exceeded the 200,000 mark, equivalent to one in 24 people in Ireland, which is a very positive statistic. However, this has implications for our centres that are providing survivorship programmes as an increased demand for community-based provision of services is sought to relieve pressure on acute services.

The second challenge we face is the lack of annual guaranteed core funding which is a risk to our sustainability. Cancer patients and their families have identified psychosocial supports as a priority for living well with and beyond cancer. The HSE National Service Plan 2024 outlines a commitment to improving access to care and performance reports as a whole-system approach and is committed to progressing the development of psycho-oncology, cancer survivorship, child, adolescent and young adult services, and the community cancer support centre network.

These Government publications and national strategies acknowledge the value of our services and what we provide. Yet, we currently operate with no guaranteed core funding and each centre primarily relies on individually fundraised income to support its services. We need a sustainable model of core funding annually. Without this commitment, we face a real threat to our sustainability and capacity to respond. In addition, the objectives of the national cancer strategy will not be met, cancer patients will face even more isolation, loneliness, depression and mental health difficulties, thus placing an even greater burden on the acute medical services at a much higher cost than our services cost to operate.

Another challenge is with the provision of professional services and the costs associated with that. Over the years the psycho-social oncology model has evolved considerably, in line with more complicated client survivorship needs. For client safeguarding and well-being, individual therapies and group supports are led by suitably qualified practitioners. There are a number of evidence-based group survivorship programmes within our portfolio and a significant increase in demand for one-to-one trauma-informed therapeutic support, in addition to peer-led drop-in support which is evident in the cost-base for our centres.

Several of our members work with volunteer complementary therapists. However, it is increasingly challenging to recruit volunteer therapists leading towards a paid model which has significant additional cost implications for us. In addition, we have faced challenges in fundraising.

The Covid pandemic closely followed by a cost-of-living increase has highlighted the fragile and unsustainable nature of the existing funding model for our centres. The Wheel, in conjunction with Ecclesiastical Insurance Ireland, has published The Value of Giving 2022 report, which highlighted the challenges of charitable giving in Ireland. It showed that charitable donations had fallen by 16% due to the cost-of-living crisis.

Most grant-making organisations require applicants to create innovative projects and refuse to consider funding core services due to the once-off nature of their funding. Aligned to this is the time commitment and resources required to generate income from fundraising; time and resources that could be better used in service delivery and development. It is a high risk from a governance perspective to rely on the goodwill of our communities to support us through fundraising.

We also face an increasing administrative burden. As we have evolved in line with changing times, the administrative burden to ensure safe delivery of client services, the reliance on digital services and supports and the skill sets required for teams have all increased. Compounding the increasing demands on resources, we have also seen an exponential increase in governance and compliance requirements from stakeholders and funders. This is required to support good governance and we welcome that because it is very important. It has cost implications for our services.

The final challenge is the recruitment and retention in the charitable sector and we are not alone in experiencing this. Staff in the sector, across all salary scales, are paid considerably lower than their counterparts in the public sector. Potential applicants can be deterred from considering roles in our centres due to this difference in pay rates. Additionally, a perceived lack of stability in the charity sector significantly impacts the recruitment and retention of staff.

In 2024 we were collectively successful in securing €3 million in once-off funding from the Department of Health for 16 centres. We wish to express our gratitude to the Minister, Deputy Donnelly, and the Department for this initial allocation which alleviated some pressure on centres in responding to clients’ needs. We are seeking the provision of core funding on an annual basis to support responsible planning and development of services to respond to clients’ needs, support staff retention and ensure good governance in our sector. We are here today to ask the committee to support our call for the provision of core funding on an annual basis.

In 2024, the total operating cost for our centres which now have 26 members is €11.1 million. We are requesting a commitment to an allocation of €5.5 million in the 2025 budget, recognising that we will be able to contribute towards our operating costs. Annual core funding is vital to ensure the viability of the community cancer support centres and will allow our centres to: fund and maintain core services, which are provided free of charge; respond to increasing demand in our communities; and support those impacted by a cancer diagnosis at every point in their journey thereby enhancing their quality of life. This will only be achieved through properly resourced cancer support centres.