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The PALLUP study, funded through the HEE/NIHR ICA Senior Clinical Lectureship scheme, is a five-year study that aims to identify and understand Palliative Care needs of older people living with advancing frailty, develop the evidence-base for provision of community palliative care, and co-design resources better to access and deliver palliative care

 Overall Research Questions

• What are the specific Palliative Care needs of frail elders living at home as they approach end-of-life?
• What are the key features and actions of community service delivery that better address Palliative Care needs of frail elders and how might carers better access this care?

Phase Specific Aims and Objectives

Phase 1- Aim: To establish consensus on the core Palliative Care needs of severely frail elders.

Objectives

• Undertake a two round Modified Delphi with clinicians, severely frail elders, their family carers and care providers across health, social and third sectors to identify core palliative care needs
• Contribute insight about the shared and distinctive features of core palliative care needs of frail elders

Phase 2- Aim: To map and categorize the scope of, and variation in, community palliative care  provision for severely frail elders and identify common features of innovative service provision using an England wide Survey

Objectives

• Document common responses of care agencies to palliative care needs
• Describe common components of innovative services introduced to meet palliative care needs of frail elders

Phase 3- Aim: Use in-depth case studies to understand the (met and unmet) Palliative Care needs and experiences of care for severely frail elders as they approach end-of-life, their families, and the response of care agencies.

Objectives:

• A multi-perspective investigation using longitudinal, prospective, in-depth case studies (N=3) in sites identified as delivering innovative models of care delivery.
• Explore, from their perspective, the experiences of frail elders as they approach end-of-life and that of family carers and care agencies; in relation to the met and unmet Palliative Care needs, changes in these needs, how this is identified and agency response
• Characterize and describe core service components of Palliative Care for frail elders
• Identify and Understand elements of service assessment, response and configuration that facilitates or impede meeting Palliative Care needs

Phase 4- Aim: To develop a framework of Palliative Care provision for severely frail elders approaching the end-of-life, generate guidance for service delivery that better addresses their Palliative Care needs and a tool for carers to trigger access.

  Objectives

• Determine the key features of palliative care for frail elders approaching end-of-life
• Develop Service Framework on key features of Palliative care and tools to facilitate adoption and co-design a tool for family carers to self-identify triggers to access Palliative Care and carry out preliminary testing of tools in practice

Study Outcomes:

• Inform future research through consensus on specific Palliative Care needs of frail elders 
• Describe and characterize services nationwide 
• Inform service delivery by enhanced understanding of experiences of frail elders 
• Create a Service Framework outlining key features of community Palliative Care for frail elders-
• Provide detailed guidance  and resources on embedding the key features of Palliative Care for frail elders into services and recommendations on assessments and measurements that best supports delivery of this care-
• Tool for family carers to self-identify triggers to Palliative Care 

Aim: To grow a research Partnership of care providers that will improve the coordination of end-of-life care for older people living with advancing frailty in the community.

Background: Frailty affects 10% of people aged over 65, increasing to around 65% of people aged over 90. Frailty is a state of vulnerability that lowers physical and mental ability and leads to an increased risk of disability and admission to hospital or a care home. Death from frailty is common. Someone with advancing frailty may need help from others such as help around the home or going out, or they may be completely dependent on others for personal care. Living with advancing frailty often means living with having multiple care needs that require care from multiple providers and sectors, for example the NHS, social services, and the not-for-profit sector. However, this care is often patchy and not joined up, with families often needing to providing and coordinating care. These factors can lead to poor quality of life for people with frailty and their families. Little research has studied how to best support and care for people with advancing frailty as they near the end of life, particularly as they move between care providers and sectors. Our new Partnership will support care providers and individuals to 1. grow research skills. 2. establish what we need to know to provide joined-up health and social care services 3. write clear research proposals and 4. be ready to lead or help with these studies.

The Partnership: Our Partnership brings together three diverse regions of England that, according to NIHR statistics, are underrepresented in end of life research: South East England, South West London, and the East Midlands. Partnership members are care providers across the NHS, social care and not-for-profit organisations, universities, and frail older people and their families. We will be supported by Integrated Care Systems, which are new government bodies designed to improve the way local health and care organisations work together. Our Partnership is community-focussed, as this is where most older people wish to live out their final years.  

Activity and Outcomes: Over a 15-month period we will work with Partnership members to grow research skills and knowledge, and agree what research needs to be done. We will: 

•            Establish the Partnership, including identifying and connecting all key contacts (months 1-2)

•            Investigate and cChart current research capacity and care provision and investigate research opportunities, to understand what helps and what hinders Partnership care providers to 1. get involved in research, 12. work together to support those living with advancing frailty, (months 3-9)2. get involved in research (months 3-9)

•            Carry out activities such as: developing and supporting PPIE within each region, jointly developing guidelines, and delivering training, to support Partnership members to become more research confident (months 6-12)

•            Agree future research priorities and prepare a research proposal for NIHR funding (months 12-15)

Involving People: Older people and their networks are central to every activity. A key outcome is that each region will be helped to develop local PPIE to support the Partnership and future research. A ‘buddy’ system of PPIE experienced Partnership members matched with naïve ones will foster strong PPIE systems being established PPIE development will follow NIHR PPIE principles and be led by an expert in the field. Older people and their networks are central to every activity. A key outcome is that each region will be supported to develop local PPIE to support the Partnership and future research.

Dissemination: We will work with all Partnership members to agree on how and where best to tell people about our work and learning, e.g. research informed practice events and public engagement activities.