In a reflection paper launched recently, the Irish Hospice Foundation (IHF) applauds the commitment by the palliative care sector and all who contributed to the Minimum Data Set. In December 2017, the IHF in partnership with the HSE, published patient data for adults specialist palliative care (SPC) services for the first time. The publication, referred to as the Minimum Data Set (MDS) provided a clear baseline for services but also showed how much progress had been made between 2012 and 2015. This tracks the development of the delivery of specialist palliative care (SPC) in inpatient palliative care units and in the community.
Commenting on the reflection Sharon Foley, CEO of the IHF said, “Gaining a clear picture of Irish specialist palliative care services benefits everyone. However, it is totally unacceptable for the people living in the Midlands to be denied the full range of end-of-life care available to the rest of the country and with no clear plans for inpatient beds, this needs to be urgently addressed.”
The IHF’s analysis also shows that:
- Year on Year, more patients are accessing SPC, necessitating the provision of more resources;
- Unequal access to specialist inpatient palliative care units persists; Since 2012, national policy stipulates there should be 10 inpatient beds per 100,000 population –however there remains NO inpatient beds in CHO 8 (Midlands and North East)
- Since 2012, both wait times and access levels to SPC in the community have improved
- The provision of SPC services to non-cancer patients is increasing
- Data on wait times for specialist palliative care in-patient unity (IPUs or often called Hospices) is encouraging but it masks inequities in regions with little or no service
- The 100% response rate is a very positive reflection on the commitment within sector to monitor and track service activity and offers robust data. This response rate is much higher than achieved in UK (circa 70%)
While celebrating the many improvements in SPC provision in recent years, the paper also includes the IHF’s recommendations for improving the effectiveness of SPC. These include a range of suggestions for broadening and strengthening the data collected which can help all stakeholders to understand trends over time. The data reveals issues that need to be resolved in the delivery of equitable specialist palliative care, such as
- Eliminating funding deficits and any regional disparity in access to inpatient units in line with the new HSE Palliative Care Services, Three Year Development Framework, 2017-2019, as a matter of urgency. This includes the creation of inpatient palliative beds in the Midlands and North East as soon as possible.
- Eliminating staffing deficits: staffing ratios, originally set in 2001, require updating as part of the Department of Health commitment to update national policy, including workforce planning
- Updating national policy on access to SPC, to include required number of beds and other services per region
- Dealing with inequities in the length of time referred patients have to wait for SPC services
- Resolving disparities in access to SPC for people who do not have cancer
- Recognising officially the role of SPC inpatient and community services on relieving pressure on acute services, especially in terms of bed management
- Improving the end-of-life experience of those who die in hospitals through reporting on the Minimum dataset in acute hospitals and establishing key performance indicators for this setting.