Evaluation of palliative care in England published
Today, the Health and Social Care Select Committee Expert Panel’s evaluation of palliative and end-of-life care in England report was published. We were pleased to contribute our experience of end-of-life care for older people receiving care, especially in care homes, to the call for evidence earlier this year.
The report begins with an important acknowledgement of the role of social care for those nearing the end of their lives, with recognition that this may have been underrepresented as the majority of contributions were from the healthcare perspective. We were one of few contributors from the social care perspective, despite the fundamental role that social care plays at end-of-life, especially as over a fifth of people die in care homes.
There were a number of conclusions reached by the report. In particular, those that resonate with our experience of the people we support include:
The health and social care workforce is ill-equipped to meet the needs of people at the end of life because of the insufficient provision of education and training
The transition of palliative and end-of-life care to the community is hindered by inadequate provision of social care and widespread workforce and skill shortages
There is a lack of a commissioning framework for social care
Palliative and end-of-life care patients, service users and their families are too rarely given the opportunity to plan effectively for the future
Underserved and marginalised communities have significant unmet needs in palliative and end-of-life care
We were pleased to see key points from our evidence quoted in the report, specifically:
There is a lack of specialist palliative care provision for people living in care homes, and access to General Practitioners can be difficult
There is a lack of oversight of palliative and end-of-life care services in care homes and there are no clear expectations on standards for social care
Care home staff often have minimal if any end-of-life care training
The report addresses that specialist palliative care teams cannot deliver all end-of-life care, however we would have liked to have seen made more included on the challenge in getting specialist palliative care support when you are a care home resident. The report rightly recognises that if you live in a care home, then you are “dying at home”. and as part of the ten-year health plan’s shift from hospital to community, we hope to see investment in palliative care from the Government to deliver this will be needed to deliver this. Currently we hear through our adviceline of people being rushed into hospital from care settings at end-of-life due to dangerous or inadequate end-of-life care.
The report also recognises that there are particular groups with underserved needs in palliative care, including those living with dementia, and we know that signs of deterioration can often be missed by staff with inadequate training, and dismissed as symptoms of dementia, meaning that people don’t get the care that they should.
Of critical importance, and well-recognised throughout the report is the lack of training on end-of-life, across the whole person’s journey, but especially of care workers. There is also a lack of data on how many care staff have undertaken this kind of training. Without training on this area, it can be unclear to staff when an individual is reaching the end of their life, and we hear of this leading to inappropriate decisions being made about pain medication, withdrawal of fluids and nil-by-mouth.
Other areas that resonate with our experience include the pressures on families to try and coordinate a fragmented system when they are already struggling to come to terms with their loved ones death. We also hear of this becoming a fractious time between care staff and families, particularly if there is disagreement about decisions or access to healthcare support.
As we addressed yesterday, the announcement of the new Modern Service Framework for end-of-life and palliative care didn’t mention social care. The Government must recognise the vital role that social care plays at this critical time for individuals and families. Currently 22% of public expenditure per person at the end of life is on social care, compared to over 50% of total expenditure on healthcare.
The provision of palliative and end-of-life care is only going to come under further scrutiny as the Terminally Ill Adults (End of Life) Bill progresses, and the precedent must be set that social care settings are recognised as places that people die, and social care teams are recognised as part of the end of life process.
We are grateful to the expert panel for the opportunity to contribute our experience, and glad to see recognition of the vital role that social care plays in end-of-life care. The Government must now work to implement policy solutions so that people living in residential care settings and those with degenerative conditions like dementia receive safe, person-centred end-of-life care.