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 or 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 per cent describing scarcities in end-of-life medication. 

Our report therefore recommends that the Welsh Government should ensure that palliative and end-of-life care is at the heart of plans for potential future pandemics, and works 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 experience of people in Wales, and recognise the impact the pandemic has had on the nation's healthcare systems, specifically for people at the end of life. 

Although the formal response to our report, received from the Welsh Government 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 was 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're supportive of it, and state that 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, 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 per cent, 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 in 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 families and friends at the 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 healthcare 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 to 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 access 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 in-patient care, starting with improving out-of-hours support, and ensuring that people have a single point of access to co-ordinated care. Also, 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 that people's priorities for place of care are reflected in workforce planning and investment at the local level. And 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 that palliative care is at the heart of plans for potential future pandemics. And to 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. Diolch yn fawr.