The pandemic has seen a dramatic increase in deaths at home. There has also been a shift in how healthcare services are delivered. Many people have stayed away from healthcare settings due to fear of Covid-19 infection. We have been closely following this issue and believe it is one the most serious health issues emerging from the pandemic.
We have heard from hospice and other palliative care staff of the “sheer amount of death” they’ve witnessed, and the huge strain and stress on staff, services and families. It is clear that although hospices and other providers in the UK have done everything possible to meet the increased demand for their services by adapting to it, the systems and capacities in place to ensure people get the care and support they need in the community are failing to meet the mark. This has led to thousands of people having to rely on their loved ones to care for them.
People are dying without the vital support they need, with Hospice UK’s Dying Matters campaign estimating that 67,000 people could have missed out on the expert palliative care they required, including adequate pain relief and symptom control, between March 2020 and December 2021.
We are not here to critique the professionalism and dedication of the staff in health and care over the past two years. We are here to tell you that we believe that staff need more support as well as more training to ensure that everyone is receiving the care they need as they near the end of their lives. Crucially, community capacity and expertise is needed to support those dying at home – especially since this is a trend which isn’t going away.
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Worryingly, little is known about what has happened behind closed doors to those spending their last days at home – a matter we believe needs urgent attention so we can support the end of life care system to respond.
We need a better understanding of the care and support patients, and their loved ones, have received, so that the current systems can be changed and adapted to meet the needs of the population – now and into the future, especially as the NHS evolves and its structures change. It is therefore concerning to note that the UK Covid-19 Public Inquiry does not currently have the mandate to investigate the increase in deaths at home.
As the population ages and develops complex illnesses, the demand for expert palliative healthcare is expected to rise. And while the recent amendment to the Health and Care Bill, making it a legal requirement for those who lead our healthcare system to consider people’s palliative care needs, is a very welcome move, we now need to turn legislation into real change.
Better integration of care between community health services and care services is essential to meet the growing demand for palliative care at the home. This will also take into consideration the experiences of loved ones who have lost their loved ones at home. The experiences of people who have lost their loved ones at home are a valuable source of information that can be used to support people at the end.
This Dying Matters Awareness Week (2-6 May), we are asking people to share their stories so we can better understand the challenges facing the thousands of families who’ve cared for a loved one at home, as well as urging them to write to their MP to call for change.
We’ve been encouraged by the interest and support of colleagues across Westminster and the devolved administrations, and we look forward to working with them so that in future, everyone can die #InAGoodPlace.