Health research achieves extraordinary things. There are countless examples of life-changing, disease preventing or curative treatments. These are rightly celebrated and have shaped our society, as well as our expectations, around health and illness.
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| Break Through 1995 "Walls break hearts, hearts break walls" by Pierre Marcel via Flickr © 2011 (CC BY-NC-ND 2.0) |
But what about people living with a life-limiting illness and those approaching end of life? Health professionals often struggle to move away from an interventional, disease-focussed approach to a more holistic, person-centred approach. This risks unwanted intervention and missed opportunities for choice. This is mirrored by health research. In the UK, just 0.21% of health research is focussed on palliative and end of life care.
The reality is that people living towards end of life really struggle and whilst this may be directly related to ill-health, it is often issues of daily life which incapacitate them. These are generally overlooked by health professionals.
Since 2017, I have been involved in running research on legal needs in life-limiting illness. One element of this is social welfare legal needs (SWL): matters of daily life for which the law defines rights, entitlements and protections. In the context of life-limiting illness, the ‘big three’ are issues relating to money, employment and housing. These are prevalent, impacting most people in some way. However, their greatest impact is on people who are already disadvantaged, for example those experiencing homelessness, financial insecurity or debt, socially excluded or marginalised groups and people with multiple physical and/or mental illness. These people experience the most SWL needs, are most affected by them and are least likely to access support successfully.
Social welfare legal needs will often be presented to health professionals, wrapped up in a person’s physical complaints, but missed in favour of a focus on disease. So where else could they go? Our foundation research scoped the system of support for these issues. A wide range of services beyond health and social care provide advice and support for SWL needs, including charities, community groups, advice sector, legal services, social services, Jobcentre, housing groups, social prescribing, statutory organisations and more.
But if we took months to map the system (and it’s still growing), can we expect people in vulnerable and difficult situations to find their way?
Funded by the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC), our research has engaged members of the public with lived experience, as well as service providers in Gateshead, to find an effective system response to social welfare legal needs. We used Human Learning Systems, an approach which accepts the complexity of a system and supports co-produced responses to need founded on continuous learning.
The reality is that people living towards end of life really struggle and whilst this may be directly related to ill-health, it is often issues of daily life which incapacitate them. These are generally overlooked by health professionals.
Since 2017, I have been involved in running research on legal needs in life-limiting illness. One element of this is social welfare legal needs (SWL): matters of daily life for which the law defines rights, entitlements and protections. In the context of life-limiting illness, the ‘big three’ are issues relating to money, employment and housing. These are prevalent, impacting most people in some way. However, their greatest impact is on people who are already disadvantaged, for example those experiencing homelessness, financial insecurity or debt, socially excluded or marginalised groups and people with multiple physical and/or mental illness. These people experience the most SWL needs, are most affected by them and are least likely to access support successfully.
Social welfare legal needs will often be presented to health professionals, wrapped up in a person’s physical complaints, but missed in favour of a focus on disease. So where else could they go? Our foundation research scoped the system of support for these issues. A wide range of services beyond health and social care provide advice and support for SWL needs, including charities, community groups, advice sector, legal services, social services, Jobcentre, housing groups, social prescribing, statutory organisations and more.
But if we took months to map the system (and it’s still growing), can we expect people in vulnerable and difficult situations to find their way?
Funded by the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC), our research has engaged members of the public with lived experience, as well as service providers in Gateshead, to find an effective system response to social welfare legal needs. We used Human Learning Systems, an approach which accepts the complexity of a system and supports co-produced responses to need founded on continuous learning.
Engagement of people with lived experience of life-limiting illness and SWL needs proved critical to the value of this project. Focus group discussions revealed the scale of the challenge to manage SWL needs. The walls they faced included not feeling heard, not knowing where to go for help, lack of information to help themselves, lack of responsibility from professionals or services, poor communication between services and long delays to resolution (or non-resolution). These insights, along with those of service providers, told us that the ideal system response should be founded on relationships and offering information, problem solving and a joined up approach. This seems quite obvious and appropriate, so why are there so many walls?
Attitudes and structures
The walls come from two main sources: professional attitudes and structures. Attitudes obstruct when they use labels, stereotypes or assumptions, treat illness, not people, miss opportunities for honest discussion, restrict choice through failing to listen to priorities and wishes, overlook responsibility for holistic needs and forget to work in partnership. Structures maintain silos and fragmentation of care with the lack of clear routes to advice and support, boundaries to access through geography, referral criteria or social context, expectations that patients and carers will self-advocate and navigate themselves and missed opportunities to capitalise on the expertise of others. These walls obstruct identification and management of social welfare legal needs and amplify inequalities in care towards end of life.
We believe interprofessional learning is a route to breaking down these walls. We use short stories of experience instead of ‘sterile’ clinical cases, and facilitate discussion to explore what matters most, and the approaches to meeting needs in an inclusive, respectful and effective way. Initial pilots have shown that this is a route to closer integration of services, although the latest pilot, within the ARC project, also highlighted the challenge of engagement with online learning, accentuated by the pressure and workplace fatigue linked to COVID-19. Feedback showed that people felt too busy to attend or just didn’t turn up on the day.
We have secured a NIHR End of Life Partnership grant which we are using to co-design a research strategy for evaluation of system-wide learning around SWL needs in life-limiting illness. We are re-evaluating what we mean by ‘end of life’, pushing beyond traditional views and including people at risk of premature death. We are broadening our insight into the inequalities and prejudices embedded within care of people who may be living towards end of life. We can see the walls; our task is to break them down.
This project ‘Integrating care to meet social welfare legal needs in life-limiting illness. Qualitative investigation of a multi-agency, complexity-informed intervention’ has been funded by by the National Institute for Health Research (NIHR) [Applied Research Collaboration North East and North Cumbria (NIHR200173)]. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Image: Break Through 1995 "Walls break hearts, hearts break walls" by Pierre Marcel via Flickr © 2011: https://www.flickr.com/photos/21063155@N06/5409729627 (CC BY-NC-ND 2.0)
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