In January 2016 Marie Curie launched the Big Lottery-funded Including Diverse Communities in End of Life Care project. The project has explored the needs of three groups of people living with a terminal illness in Cardiff and the Vale. The groups were identified based on current research around gaps and challenges in palliative care provision, and through consultations across Cardiff and the Vale.
The groups were:
- People with dementia
- People with learning disabilities
- People with different or no religious beliefs.
These groups, often with a wide range of needs, face many challenges and barriers to accessing healthcare services, including palliative and end of life care. The project subsequently identified some barriers that were consistent across all three groups and some specific to each individual group.
Across all three groups, there was often a limited understanding of palliative care and who could access our services. Moreover, misconceptions about assisted dying was also a factor that impacted and impeded access to care. This lack of knowledge and understanding about our services and palliative care was also evident within social care professionals.
The project found that, despite it being one of the most common causes of death in the UK, dementia is not always recognised as a terminal condition. The lack of a formal pathway and limited availability of palliative care services makes it harder for people with dementia to access services.
In assessing the needs of people with learning difficulties, the project found that carers and professionals may try to ‘protect’ a person for whom they care from talking about death. There were also instances of non-healthcare professionals, for example carers, not being listened to by statutory service providers. Moreover, the reality of the increased risk of people with learning difficulties, particularly those with Down’s syndrome, of developing dementia should be considered by Marie Curie and its statutory partners.
We also found that people from different religious backgrounds often expressed concerns about the ability of palliative care staff’s ability to meet their spiritual and cultural needs. Access to information on Marie Curie services and language and communication issues were also areas where improvements can be achieved. With estimates of people in the UK identifying as non-religious at around 50%, the project found that a lack of pastoral support for this group was a concern.
The project’s recommendations were developed by analysing the feedback we received and identifying key themes and areas for improvement. Our recommendations fall within three thematic areas: community engagement, building inclusive services, and increasing flexibility of services.
Firstly, our community engagement and awareness raising activities need to be part of Marie Curie’s core services and delivered at the local level, making a long-term commitment to engaging with the communities we serve. As recognised national experts in palliative and end of life care, we should work to educate both professionals and the public around palliative and end of life care. Information in a variety of accessible formats should be widely available in community, health and care settings and should include key facts and messages which counteract common misconceptions that can serve as barriers to accessing services.
In addressing the second area for improvement, building inclusive services, Marie Curie should actively focus on connecting with belief-based communities. Exploring new ways of providing spiritual and pastoral care to patients of all faiths and none will enable individual choices in care. Palliative care staff should be supported to develop understandings of different spiritual and cultural practices and beliefs and how they can be supported. Our care staff are already being trained and supported to understand how dementia and learning disabilities impact on a person and their care experience. Lessons have been learnt by the hospice which will be considered in future care planning and service delivery.
Lastly, to develop more flexible services, Marie Curie should work with service planning bodies across health and social care to explore service models which would enable earlier interventions. Moreover, Marie Curie should consider the delivery of advance care planning services not linked to receiving any other services, to encourage more people to prepare for future end of life needs.
For Marie Curie, this project has improved our understanding of the barriers faced in accessing palliative care services for people with dementia, learning disabilities, and people with different or no religious beliefs. We have gained more knowledge, experience and confidence working directly with these groups and will ensure their voices and feedback are considered as we plan, develop and improve the inclusivity and access to our services.
The challenge for Marie Curie and other service providers, within palliative care and the wider health and care sector, is to ensure that the work, findings and recommendations from this project can be maintained and further developed in supporting equitable access to palliative care services for all people.
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