Shining a light on ‘hidden patients’ in need of palliative care

Categories: Community Engagement.

Saturday 10 October is World Hospice and Palliative Care Day, a unified day of action to raise awareness of hospice and palliative care and to remember all people in need of these services.

World Day is hosted this year by the Worldwide Hospice Palliative Care Alliance (WHPCA) and the International Children’s Palliative Care Network (ICPCN).

To mark the day, the two organisations are publishing a new report ‘Hidden Lives, Hidden Patients’, which focusses on patients who often struggle with access to palliative care – including people with dementia, LGBT individuals, people living with HIV, people with disabilities, prisoners and those living in rural settings.

Children and young people are also often neglected and ‘hidden’, with over 20 million children worldwide needing a palliative care approach.

“The Global Atlas of Palliative Care at the End of Life estimates that, worldwide, over 40 million people would benefit from palliative care (20 million of these being at the end of life). However, less than 10% of the need for palliative care is currently being met,” explained Dr Liz Gwyther, Chair of the WHPCA.

Adding: “This year’s campaign: ‘Hidden Lives / Hidden Patients’ highlights groups that have additional barriers to accessing palliative care.”

While the Quality of Death Index report, published this week by The Economist Intelligence Unit, ranked end of life care in the UK as the best in the world, inequalities still exist in the country with factors such as diagnosis, age and ethnicity impacting on access to palliative care and experience of care at the end of life.

A report published earlier this month highlighted how variations in the availability and quality of specialist palliative care exist even within London.

Reaching hidden patients

While it is important to acknowledge that there is much to do to ensure that everyone who needs it can access high-quality palliative care, it is equally important to acknowledge and share the innovative and inspiring efforts that UK hospices are making to ensure they include those who may be hard to reach.

Those who are homeless often have a profound mistrust of health and social care professionals because of previous poor experiences. With the aim of widening access to end of life care for homeless people and those who support them, St Nicholas Hospice Care in Suffolk set up the Stephen Project. An important part of the project has been to establish relationships with support workers and other agencies that are already in a position of trust and to offer them training and support in the areas that they, and their service users, have identified will improve their life and death outcomes.

In London, Trinity Hospice has launched an LGBT Friends group, as part of the hospice’s commitment to improve its relationship with people from lesbian, gay, bisexual and trans communities. Writing for ehospice earlier this year, CEO Dallas Pounds said that the group’s input has been “invaluable in giving us an insight into what an inclusive environment might look and feel like, and has started to equip us with better understanding of potential needs and some tools to address them.”

In Glasgow, the Building Bridges Project at The Prince & Princess of Wales Hospice has been working to improve access to end of life care for people with learning disabilities. Led by a a hospice practice development facilitator and a learning disability nurse leader, the project has involved providing training, advice and liaison and developing a care pathway and other resources.

Through sharing the innovative work of hospices here in the UK and around the world through ehospice, Hospice UK hopes to inspire others to reach out and support the hidden patients in all of our communities.

Get in touch and tell us how you are addressing the needs of ‘hidden patients’ in your community & find out more about World Hospice and Palliative Care Day on the WHPCA website.

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