Mr. Chris Macey:

I thank the committee for the invitation to appear to discuss stroke, Ireland’s third biggest killer disease and our biggest cause of acquired disability. In her statement, Ms Bardon outlined a sense of abandonment that is unfortunately replicated every day among thousands of stroke survivors countrywide. At a time of intense personal crisis, many people are confronted with a therapy wasteland after being discharged from hospital, often resulting in disability that is avoidably severe and prolonged.

Approximately 7,500 people have a stroke here each year and up to 70%, which is over 5,000 people, will be discharged with a disability. That number will soar in the years ahead with a predicted increase in stroke incidence up to 12,000 by 2030. During the last decade there has been a dramatic improvement in acute stroke care, despite residual under-investment and major staffing shortages. The death rate has fallen by over 25% and permanent severe disability has been substantially reduced. More people than ever are returning home after stroke but there has been no corresponding investment in community rehabilitation and life after stroke services that enable survivors to make the best possible recovery. This is clearly at odds with the commitment in the UNCRPD to full participation of people with disabilities in public, economic and social life, all the more so because the chronic deficits that exist cannot be blamed on prohibitive cost. There is no shortage of spending on stroke in the State. The problem is how these resources are spent. Economic and Social Research Institute, ESRI, research for the Irish Heart Foundation found State expenditure of up to €414 million on nursing home accommodation for stroke survivors, but just €7 million on community rehabilitation services that can enable people to remain living at home.

In effect, the health system starves recovery services of resources, waiting until after it can help people maximise their recovery and then spending vast amounts on institutional care that is often inappropriate, particularly for younger stroke survivors.

Much of what is needed to start eliminating deficits in hospital services can be delivered through the implementation of Ireland’s first national stroke strategy, which remains unpublished four years after being requested by the then Minister for Health, Deputy Harris. Among many important developments, it will tackle shocking hospital service gaps such as just 4% of patients currently receiving a psychological assessment after their brain attack and one in 20 getting early supported discharge services, which have been proven to reduce disability and overall health service costs simultaneously.

However, we also need a plan that focuses on the post-discharge deficits highlighted so eloquently by Ms Bardon. Perhaps the best illustration of the lack of priority in this area is that the health authorities have never attempted to quantify how many stroke survivors there are in the State. The figure of 30,000 that it has used comes from an estimate based on international studies that are a quarter of a century old. Studies by the Institute of Public Health and UK comparisons suggest the real figure is approximately 90,000 people. This raises two questions - how can the needs of stroke survivors be met when they remain unknown, and is there any intention to ever meet these needs?

Meanwhile, survivors are forced to navigate community services that, if they exist at all, have been developed in a fragmented and often age-specific way, discriminating against older survivors in some areas and younger ones in others. This makes accessing appropriate services even more difficult. Research carried out by the Irish Heart Foundation found particularly stark deficits facing younger survivors. For example, almost half of them either paid privately for physiotherapy or did not receive a service. However, the hidden impacts of stroke provided the biggest difficulties. Of the respondents, 95% suffered anxiety, 75% were depressed and 72% felt isolated, with no help available. Meanwhile, 71% did not get the counselling they needed and although 88% were in work before their stroke, just 36% were working when surveyed. The Irish Heart Foundations is addressing these deficits as best we can through a range of life-after-stroke services, including face-to-face support groups that are beginning to reopen post pandemic, a dedicated younger survivor network that Ms Bardon mentioned and a national phone support service assisting survivors to make the transition home. We also run specialised programmes, including counselling, fatigue management, emotional well-being and peer-to-peer phone support. Just a fraction of service costs are covered by statutory funding, however, which threatens their sustainability.

We remain a long way from meeting our obligations to stroke survivors as set out in the UN convention. Crucial first steps include publication and full implementation of the national stroke strategy, research to establish the number of stroke survivors in Ireland and a comprehensive assessment of their service and support needs, and development of a pathway covering the entirety of life after stroke. For people such as Fiona, the model of care lasts a few weeks and then it is effectively abandoned even though the person has to live with the effects of his or her stroke for decades afterwards in many cases. This pathway must include a right to a discharge plan and services available in the community as and when they are required.