Ms Caroline Lynch:

I welcome the opportunity to address the committee. Both our pre-budget submission and my opening statement have been circulated to members. I do not plan to go through the latter word for word because we are pressed for time. There are three issues on which I wish to focus, the first of which is the specialist palliative care budget. I would appeal to the Government that there should be no cut to that budget this year. The second issue I wish to raise involves strategy and the position with regard to end-of-life scenarios. The third and final matter relates to paediatric palliative care, on which I will provide an update.

The Irish Hospice Foundation is the national charity dedicated to all matters relating to dying, death and bereavement in Ireland. These are matters which are relevant to all of us. We have all experienced bereavement in some way in our lives and we will all experience death. Our work centres on development, support and advocacy across all care settings. We receive no core funding from the State. Ours is an independent body which relies on the public for its initiatives. A key point is that high-quality end-of-life care - which includes palliative care - encompasses primary, secondary and tertiary care, all diagnoses, all ages, all care settings and involves most health care professionals. We believe that with proper planning, investment and commitment good end-of-life care can make a real difference to both the quality and cost of health care. CSO figures show almost 29,000 people died in Ireland last year and that at least ten people are directly affected by each death. This is a hugely important sector and we are concerned here with supporting over 290,000 people each year.

The budget for specialist palliative care services for this year is €78 million, down from €81 million in 2011. This €78 million is supposed to run a national service. In other words, it is supposed to be used to support services and staff in each of the nine hospices, to run day-care services and to support home-care teams, which comprise approximately 160 nurses throughout the country. By contrast, the budget for one region which comprises two and a half counties and in which three hospitals are located is €94 million. I am not suggesting that the funding for these hospitals should be cut, I am merely making the point that the Irish Hospice has a budget of €78 million which it must use to try to run a national service.

The specialist palliative care budget has been cut by 3% in each of the past two years. There have also been further indirect cuts as the costs of annual increments or non-pay inflation were not met. As members will be aware, hospice services have always been obliged to rely on the loyalty of local communities. It has been very fortunate in retaining that loyalty. Budgets have traditionally been a combination of voluntary and statutory funding. The ratio of State to voluntary funding used to be approximately 85:15. Now it is closer to 75:25. Members of the public are very loyal to their local hospice groups but there is a real concern that any further erosion of an already small budget will destabilise what is a fragile and underdeveloped sector.

Specialist palliative care involves caring for people with life-limiting conditions who have complex needs. Many are referred to the hospice movement at the end-of-life stage. These individuals should receive priority consideration in accessing a high-quality service and should not be on a waiting list. The goal of specialist palliative care is for patients to have access to services no more than 48 hours after referral. This goal is becoming more and more difficult to achieve. This is obviously a result of the fact that many services are experiencing staff shortages and are affected by the public sector recruitment embargo. The concern in the specialist palliative care sector is that if there is a cut in budget for 2013, this will inevitably lead to longer waiting times for those seeking to access services and a heightened risk of further bed closures. An example in this regard is that Milford Care Centre in Limerick was obliged to place a temporary cap on the number of beds in use from 30 to 28 last year. A further cut would cause a major disruption to the provision of palliative care. As already stated, the sector is struggling to maintain high-quality services.

There are two facilities which were built with extra bed capacity. I refer to Marymount in Cork, which 20 additional beds, and St. Francis Hospice in Blanchardstown, with 24 additional beds. These beds are not being used because there is no funding available. There is a need for progress to be made on the development of a hospice for the south east in Waterford Regional Hospital and a satellite unit in Kerry. As members will know, local communities have contributed significantly to the costs of developing inpatient units in these locations.

We have a policies and strategies for specialist palliative care in Ireland. Some recommendations in the most recent report, Palliative Care Services - Five Year/Medium Term Development Framework, have been implemented. However, most have not. Palliative care in this country is traditionally recognised as being of a very high standard internationally. It would, therefore, be a tragedy to see much of the good work done in this regard being reversed.

The beauty of specialist palliative care is that those involved in it can care for people in their own homes. In addition, more people are facilitated in the context of dying at home. This is generally line with the wishes of patients. There are excellent home-care services in areas that could be termed "hospice poor", namely, those which do not have inpatient units. In such areas, however, patients do not have the choice of going to a hospice if their symptoms cannot be controlled at home. As a result, their only option is to receive care and die in an acute hospital. As everyone is aware, the latter is an expensive form of care. This is contrary to national policy. It is also contrary to the wishes of most patients, most of whom want to be cared for and to die at home.

The key message we wish to get across is that people at end-of-life stage should be given priority status within our health service and should be protected. In that context, there should be no further cuts to specialist palliative care. Making such cuts would be shortsighted and would give rise to problems for those at end-of-life stage. After all, we only have one opportunity to get this right. Those to whom I refer are our most vulnerable citizens and patients.

While €78 million goes into specialist palliative care - some planning is involved in the expenditure - international evidence shows that between 10% and 15% of health care budget is spent on care of people in their last year of life. Therefore, in Ireland that means that at least 1.3 billion of the health budget is spent on end of life care, which would be largely unplanned expenditure. There is a need for planning. Initiatives already under way need to be supported, embedded and mainstreamed.