Our Motion today notes the Cross-Party Group on Hospice and Palliative Care’s inquiry, “Experiences of palliative and end of life care in the community during the COVID-19 pandemic” in Wales.
The motion is based entirely on the evidence-based report resulting from this– which sought to give people and organisations at the very sharp end of the pandemic a voice and a platform.
The Report summarises the written and oral responses received, detailing experiences of palliative and end of life care in people’s homes and care homes during the pandemic.
The majority of respondents gave evidence based on their own individual personal and professional lived experience as family members, unpaid carers, social workers, nurses and doctors.
It is clear from those contributions that the Covid 19 pandemic turned the world of palliative care on its head, dramatically disrupting the lives of individuals at end of life, their loved ones and the health and social care workers supporting them.
I express my thanks and gratitude to the family members, carers, nurses, doctors and many others who generously shared their often heart-breaking, but also uplifting and insightful accounts of caring for some of our most vulnerable citizens through the most testing of times.
We wanted to learn from their experiences of end of life care at home and in care homes so that we can be better prepared for any future disaster and better placed to meet the ongoing impacts of Covid and the cost of living crisis.
We believe this is more important than ever before, considering demand for palliative care in the community is forecast to nearly double by 2040 and the pandemic has given us a glimpse into how our health and social care system will cope under similar pressures in the not so distant future.
Our motion today incorporates this and “acknowledges that during the COVID-19 pandemic, hospice and palliative care played a critical role, and went above and beyond in supporting patients and their families.
Key findings from the inquiry include:
• Visiting restrictions in care homes and other settings caused untold pain and distress, leaving many patients and their families isolated at end of life leading to cases of complex bereavement.
• Many people had devastating experiences of caring for loved ones at home and struggled to access adequate palliative care support.
• People at end of life faced difficult and tragic transitions between home, hospital and care home.
• Pandemic responses sparked a revolution in collaboration, creative working and use of communication technology across health and social care services delivering palliative care.
• Care home staff and those working with them were at times concerned with hospital discharge into homes and the use of do not attempt cardiopulmonary resuscitation decisions.
• There were widespread shortages of staff, personal protective equipment (PPE) and end of life medication impacting on the delivery of vital palliative care.
Infection prevention and control measures within homes added to disruption, often requiring residents to isolate in their rooms for long periods of time.
As a consequence, many faced social isolation, often resulting in a significant decline in their mental and physical wellbeing.
The use of protective masks made what little contact carers and residents had more difficult. This was particularly devastating for those with a communication difficulty or cognitive impairment who were disproportionately affected.
Our report found that:
“lack of PPE and shortages of end of life medication, especially in the early days of the pandemic, were common issues reported by health and social care workers providing palliative care in the community. In many cases palliative and social care workers were reliant on donations of makeshift PPE items such as visors, scrubs and masks from the local community and described feeling fearful for their safety”.
Evidence from Marie Curie cited a study where almost half of healthcare respondents in Wales reported shortages of PPE and insufficient training in its use, affecting their ability to provide care to patients.
The same study found respondents from Wales were more likely to experience medication shortages compared to other parts of the UK, with more than 40% describing scarcities in end of life medication.
Our Report therefore recommends that :
- That the Welsh Government should ensure that palliative and end of life care is at the heart of plans for potential future pandemics and work with families and professionals to review how future visiting regulations could be enacted in a more compassionate and consistent way for those with a palliative care need.
- And that the findings and recommendations of the UK Covid-19 Inquiry must be informed by the lived experiences of people in Wales and recognise the impact the pandemic has had on the nation’s healthcare systems, specifically for people at end of life.
Although the Welsh Government’s formal response to our report received yesterday accepted the first of these recommendations, it is concerning to note that the accompanying text makes direct reference only to consulting with families and professionals whose personal experience is based outside NHS settings, rather than to working with them to review “how future visiting regulations could be enacted in a more compassionate and consistent way for those with a palliative care need”.
Whilst the Welsh Government response stated that the second of these recommendations is not applicable to them, they say that they are supportive of it and state “The UK Covid-19 Public Inquiry is fully committed to gathering information about the lived experiences of people in Wales and across the UK in general”.
However, the Covid-19 Bereaved Families for Justice Cymru expressed their continuing concern to me in the Senedd last week, that the format of the UK Inquiry will prevent it being fully informed by their lived experience.
Our report also found:
- That the pandemic saw a massive increase in demand for Palliative and End of Life Care in the community, with deaths at home increasing by over 30% and continuing at this level today, while deaths in care homes and hospitals have returned closer to pre-Covid levels after peaking at the start of the pandemic.
- That Palliative care was prioritised and redirected into communities to meet increases in demand.
- That Hospice and palliative care services that were more community orientated and integrated before Covid were better placed to meet the challenges of the pandemic.
- That Despite the incredible efforts of those in health and social care, people still experienced a lack of Palliative and End of Life Care support in their homes and relied heavily on family and friends at end of life.
- And that at times care homes faced challenges accessing Palliative and End of Life Care and often felt less valued than recognised health care settings.
The Cross-Party Group heard troubling accounts of some care homes being leaned on to take patients who had or were suspected to have Covid, as well as confusion over the best place of care for them.
Care home staff said such situations placed them under enormous pressure and created real concerns for residents and their families.
Such experiences made them feel the care home sector and its residents had been forgotten and were seen as less valuable in the wider Government message to ‘protect the NHS’.
Our motion “regrets that during the COVID-19 pandemic, some people faced difficulties accessing end of life care at home and in care homes, despite the best efforts of those working in health and social care”.
Our recommendations included:
- That The End of Life Care Funding Review should prioritise the development of palliative care capacity in the community, with the aim of making care at home and in care homes equal in prioritisation to inpatient care, starting with improving out-of-hours support and ensuring people have a single point of access to co-ordinated care.
- That the National Programme Board for Palliative and End of Life Care, supported by Welsh Government, should develop a detailed implementation plan for the new Quality Statement for Palliative and End of Life Care that ensures people’s priorities for place of care are reflected in workforce planning and investment at the local level.
- That the Welsh Government should ensure that Palliative and End of Life Care in the community is hardwired into the development of the new National Care Service and National Framework for Social Care and involve people with personal and professional lived experience in this process.
Although the Welsh Government accepted these recommendations, the accompanying text fails to acknowledge that non-statutory providers of vital care in the community, including Hospices and Care Homes, must be directly involved in the design and delivery of related future services.
Our motion asks the Senedd to call on the Welsh Government to work with the palliative care sector to learn from the COVID-19 pandemic, and ensure palliative care is at the heart of plans for potential future pandemics; prioritise the development of palliative care capacity in the community; and ensure that workforce and funding decisions prioritise …those working across the full spectrum of palliative and end-of-life care.
As Marie Curie told us “ Substantial and sustained support is required to ensure that palliative care has the workforce it needs into the future”.