Northern Ireland is experiencing a significant demographic shift, with the fastest growing ageing population in the UK. Correspondingly, the need for palliative care is high; it is estimated that over 90% of people could benefit from this specialised care. Despite this clear need, approximately one in four people, approximately 4,000 individuals in Northern Ireland every year, are currently missing out on essential palliative support. 

Marie Curie recognises that the Health and Social Care system is under extreme pressure and urgent need of reform. The Neighbourhood Model of Care, highlighted by the Health and Social Care Reset Plan is a much needed response to this crisis. The model is simple in principle: at its core, care is local where possible, and central where necessary.  

It will require everyone delivering care in the community working together in a coalition of the willing; something which we believe is possible, but it’s not without its challenges. A formal partnership between community pharmacy, general practitioners, community and voluntary organisations, local government, health and social care trusts and independent providers is cited as a mechanism to support this. How these partnerships will work is key. We know that our services are far too fragmented and dovetailing the myriad of community services for a seamless patient experience is an aspiration many of us have worked towards for many years, and yet we’re still not there.  

So, what do we believe are the challenges and why are they so deep rooted that we haven’t managed to overcome them thus far? 

The challenge of current spending and service fragmentation 

The current system exhibits two significant structural barriers to effective community-based palliative care: an imbalance in public spending and deep-seated fragmentation. 

Spending Imbalance and Acute System Pressure: A recent report on public spending in the last year of life found a substantial disparity in resource allocation. Government spends five times as much caring for people as hospital inpatients compared to what is allocated for supporting them via primary, community and hospice care, including vital services such as District Nurses, GPs and prescriptions. 

This spending pattern is directly linked to pressures on the acute system. The availability of ‘out of hours’ care is distinctly lower than ‘in hours’. Consequently, when palliative patients and carers experience a crisis, the only available option is to call GP Out of Hours services or the Northern Ireland Ambulance Service, leading to conveyance to the emergency department (ED). Many ED attendances by palliative patients are often unnecessary and could be avoided if appropriate and adequate care were in place in the community setting. Research by Marie Curie in England suggests emergency service use in the final three months of life is high, with 61% of people of people using an ambulance and 53% visiting A&E at least once. There is no indication that the situation is any better in Northern Ireland. 

The consequences of relying on EDs for vulnerable patients are serious. ED is a highly inappropriate place for palliative patients, particularly for those at end of life, and their loved ones, causing significant additional stress. Furthermore, it puts additional pressure on an already pressurised acute system. The system failure is demonstrated by the fact that 160 people died within the Royal Victoria Hospital ED in 2024, with a significant number being palliative care patients. Shockingly, the number of people recorded as dying while waiting for an ambulance is increasing, rising to 31 such cases in 2023-24, which is almost eight times the number recorded in 2020-21. 

System Fragmentation and Navigation: Patients and carers, as well as professionals, find the current fragmented system difficult to navigate, resulting in people not accessing care and falling through the cracks. The wide variety of diseases, prognoses, and stages of the palliative patient journey mean service provision requires a wide multi-disciplinary team base, often spanning different settings and sectors, to support the patient throughout their journey. 

Strategic requirements for the Neighbourhood Model 

We believe that now is the time to get palliative care right in Northern Ireland. To realise the potential of the Neighbourhood Model and provide a true continuum of care, two key areas must be addressed: ensuring readiness through partnership and establishing sustainable funding. 

Readiness, Partnership and Integration: Any Neighbourhood type Model of care requires everyone delivering care in the community to work together. However, our community infrastructure is not ready to care for more people in the community, and in fact is currently unable to meet current need. 

Crucially, for patients with a life limiting illness and those at end of life to benefit from this approach we need to see greater integration between existing palliative care providers with primary, acute and ambulatory care. Furthermore, patients and carers also need to be made more aware of palliative care and its benefits. They need assistance in navigating this complex system which can vary from Trust to Trust. 

The statutory sector heavily relies on the expertise provided by the independent hospice sector. However, the independent hospice sector is often overlooked as an equal partner in the delivery of care by the statutory sector, as it’s not considered a core service. Addressing this barrier is critical if the aspiration of delivering a seamless pathway that meets palliative patient needs in the community is to be achieved. Many examples of agile and innovative practice exist across the independent hospice sector that could be rolled out more widely, but they are not ubiquitous, and commissioning and funding structures currently curtail innovation discussions at operational rather than strategic levels, which is where reality impacts for patients. 

Sustainable Funding Imperative: The current funding model for hospice providers of palliative care is unsustainable. The Department of Health funding policy for the independent hospice sector was set 20 years ago with an agreement that statutory sector would cover 50% of service delivery costs. With ever-increasing overhead and ad hoc costs, this more closely equates to around 40% of statutory funding. This level of reliance on charitable donations would be an unthinkable proposition for any other critical healthcare service. 

The Independent Hospice Sector is calling for the current 50% funding policy increased and consideration to be given to 100% funding of operational costs of core palliative care services. 

Ending the policy vacuum 

The success of any Neighbourhood Model will also require strategic direction at a departmental level. There has been a policy vacuum in Northern Ireland regarding palliative care for many years. We have needed a new Palliative and End of Life Care (PEOLC) strategy since the previous one expired in 2015. This strategy must address both the critical and urgent needs of patients now, as well as the growth and increasing complexity of needs into the future. This is something Marie Curie in Northern Ireland has long campaigned for. 

Marie Curie is in favour of any actions which would ensure that high-quality, integrated palliative care is delivered where and when patients need it most. We also welcome the positive development of including death, dying and bereavement in the recent Programme for Government, something we also campaigned for locally. However, the aspirations within the PfG still require a framework to fully realise them. We look forward to the departmental response to the Health Committee inquiry report on Access to Palliative Care, published this week. The Inquiry report has drawn attention to what is a very important issue. It should act as a catalyst for the change our society needs and that every citizen deserves.      

Joan McEwan, Associate Director – Policy & Public Affairs – Marie Curie Northern Ireland.