Puntuación de FACT G según Rango de Edad TABLA 6.2.1 Rango de edad vs FACT G

Summary

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7 OVERVIEW

Since 2001 Irish government health policy has indicated that palliative care should be available in all care settings and should consider the needs of patients with malignant and non-malignant diseases. However policy commitments relating to management of life-limiting diseases other than cancer are only emerging. Specifically HSE working groups have been recently established on COPD, Dementia and Heart Failure. Following submissions arising from the work of the Extending Access Study it is anticipated that finally palliative care needs will be recognised and referenced in future policy frameworks for people with non- malignant, life-limiting diseases. One of the future challenges will be to implement such policy directions as well as to ensure that palliative care is referenced in all disease management frameworks at policy and operational level.

International practice in this area has demonstrated that collaboration between SPC and disease-specific specialists is the most effective method to achieve delivery of all levels of palliative care. The requirement for SPC to educate their colleagues with regard to aspects of non-specialist palliative care is coupled with the need for joint expertise when dealing with the SPC needs of people with non-malignant diseases. The development of disease-specific strategies and end-of-life programmes in other countries can provide some direction for non-specialist care needs to be responded to appropriately.

7.1 NON-SPECIALIST PALLIATIVE CARE AND NON-MALIGNANT DISEASES

When seeking to determine how non-specialist palliative care can be integrated into disease-specific frameworks this report identified a number of challenges and barriers as follows:

• The lack of awareness of the role of palliative care for people with life-limiting, non-malignant illness

• The lack of evidence-based service models or research in this area

• The lack of training and education provision in palliative care for staff working with people with life- limiting, non-malignant diseases

• The need for further monitoring and governance systems in this area

• The sense of apprehension expressed about introducing non-specialist palliative care

• The lack of policy framework for people with life-limiting, non-malignant diseases

• The absence of comprehensive service frameworks for people with COPD, dementia and heart failure at primary, secondary and tertiary levels.

7.2 SPECIALIST PALLIATIVE CARE AND NON-MALIGNANT DISEASES

Although it has been recognised that SPC services in Ireland are well developed by international standards, it is difficult to obtain accurate data on the specific level of access of SPC for people with COPD, dementia and heart failure.

Eleven percent of SPC services indicate that they provide services only to people with cancer, MND and people with AIDS and 19% of services limit in some way the care provided to patients with non-malignant conditions. The limited availability of education and training in this area, the lack of standardised eligibility and discharge criteria and the uncertainty of the disease trajectory of non-malignant diseases have been frequently cited as barriers to development of SPC in this area. The need to determine referral triggers to assist with the timing of referral to SPC has also been suggested as helpful.

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As part of its deliberations the study sought to address some of these barriers, as well as seeking to estimate the service level of non-malignant access for which SPC services need to plan. The outcomes of these determinations are summarised as follows:

• Projections for access to SPC services for people with diseases other than cancer appear to be lower then anticipated in earlier reports. This is based on examination of recent Irish and UK literature and data from a number of Irish SPC services that have reported an open referral system based on needs rather than diagnosis. It is accepted that standardised data collection is required to determine more accurate projections in this area.

• The use of standardised eligibility criteria for access to SPC services can assist in providing clarity and equity of access for those patients with SPC needs and strengthen the identity of the SPC service. It is recommended that SPC services and their representative professional bodies consider and agree on a mechanism to determine and introduce eligibility criteria for SPC services in Ireland.

• The importance of developing a discharge policy for all patients in SPC was emphasised and criteria for such policy have been outlined in Chapter 6. However as primary care and specialist services outside of palliative care are under-developed it is acknowledged that discharging people from SPC can be problematic.

• Disease-specific triggers for referral to SPC are helpful in generating awareness of the role of SPC for people with non-malignant diseases.

7.4 ADDRESSING THE CHALLENGES

Bringing about change within health care provision is particularly challenging because of the complex relationships that exist between a wide variety of organisations, professional groups, patients and carers and the HSE [178]. Seeking to extend palliative care to people with non-malignant diseases is no exception. The challenges listed above must be accepted by a wide variety of stakeholders, from policy makers, education providers, health care providers – both statutory and voluntary – and patients and their carers. There needs to be openness from all those who have responsibility for management and delivery of care for people with life-limiting, non-malignant diseases to work collaboratively to overcome these challenges.

The recommendations which follow seek to identify how these conclusions, barriers and challenges can be addressed. Each of the Extending Access Working Groups has specifically prioritised recommendations relating to the development of service models. It is acknowledged that a strong implementation plan is critical to ensure that the recommendations are progressed.

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