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Audit into action… with a pandemic thrown into the mix!

 

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Thursday, 29 July 2021

Audit into action… with a pandemic thrown into the mix!

A blog from the Clinical Leads for the National Audit of Care at the End of Life (NACEL).

This week we are sharing a blog from the clinical leads for the National Audit of Care at the End of Life (NACEL), do continue to send your articles, blogs and case studies to maria.axford@pcc.nhs.uk and don’t forget to scroll down to vote in this week’s poll and see last week’s gold medal winner.

Audit into action… with a pandemic thrown into the mix!

A blog from the Clinical Leads for the National Audit of Care at the End of Life (NACEL).

NACEL launched nearly four years ago, with the aim of assuring high quality care of the dying in hospitals. As such, it built on previous national audits but with an increasing emphasis on quality improvement. Sixteen months into the pandemic, now is as good a time as any to take stock of what NACEL has achieved and what we have learned along the way.

Where it all started

NACEL was commissioned back in 2017 with the very defined scope of looking at the quality of end of life care delivered to adults in acute and community hospitals, during the last admission prior to death. This covered England and Wales but was additionally commissioned by the Public Health Agency in Northern Ireland. We were tasked with turning NICE quality standards and guidelines, and the Five priorities for care (from One Chance to Get it Right), into auditable measures, a challenge swiftly taken up by our newly appointed Steering Group. We were mindful of a lack of confidence in the quality of end of life care tailored to the individual, as detailed in the Neuberger report More Care, Less Pathway. The newly commissioned audit was tasked with developing innovative ways to get feedback from the bereaved, and a partnership with the Patients Association ensured that the audit was designed and delivered with patient and carer activity at its core. A wider Advisory Group was established to test out audit findings, recommendations, and to be involved with disseminating key audit messages.

Reflecting on round 1

The first year resulted in a comprehensive audit, with great participation (97% of eligible organisations took part which has been successfully maintained over the subsequent audit rounds) with a large baseline dataset from which to gauge compliance with national standards for best practice in end of life care. An innovative online methodology to seek bereaved carer views, linking them to individual case note clinical reviews was trialled, supplemented by an organisational level audit looking at governance, training and the specialist palliative care workforce.

New audit outputs were developed, with a comprehensive online benchmarking toolkit made available to provider organisations within weeks of closure of data collection to support early opportunities for local service and quality improvement. Subsequently, dashboard reports and the NACEL case studies were provided. An open and transparent summary score methodology was used, underpinned by the specialist expertise of the NACEL Steering and Advisory Groups, to help condense large data sets into meaningful outputs for audit participants. The summary scores have been published and the NACEL Team have worked with the CQC to help utilise the findings in their inspection regime. We took great care not to duplicate other complementary workstreams, such as Learning from Deaths (England) and Delivering Safe, Compassionate Care (Wales), and aligned our work to national priorities.

A comprehensive set of national standards had required a comprehensive audit, with a high burden of data collection falling on hard pressed clinical staff. Following feedback from audit participants, we reduced the audit requirements considerably, (both on the measures collected and on the number of case note reviews completed) without compromising the eventual findings. We also invested in obtaining increased feedback from the bereaved carer/family voice, recognising that they are best placed to comment on both their experience, and the experience of the dying person, whilst in hospital. Further concentration was given to areas highlighted as needing a further review, from round one of NACEL.

Key findings identified

So, what did the first two rounds of the audit tell us?

  • Early recognition that an individual may die imminently, within hours to days, underpins their involvement in developing their care plan, and supports the realisation of their wishes and priorities. Such early recognition is a key measure for the audit. In round two of NACEL 88% of patients were recognised to be dying imminently (within hours or days), with the median time of recognition being 41 hours (reported as 36 hours in round one).
  • Whilst 71% of patients in round two had an individualised end of life plan of care, we must be striving to achieve higher compliance in this area.
  • Although it was reported from the survey of bereaved carers that 80% of respondents felt hospital was the right place to die, 20% perceived there was a lack of peace and privacy.
  • In around a quarter of cases, respondents to the Quality Survey felt that the quality of care provided to families and others was ‘poor’ or ‘fair’.
  • Hospitals still do not have “adequate” specialist palliative care staffing levels with two-thirds of them lacking face-to-face specialist provision seven days a week.
  • We know from feedback in the second round, that 77% of acute and community hospital sites are creating action plans from NACEL findings to promote end of life care in organisations and to further drive improvements.

Impact of the pandemic

With the pandemic in 2020 we had no choice but to cancel the audit. Specialist palliative care teams, along with the wide spectrum of NHS staff were challenged like never before. End of life care changed inconceivably, with large numbers of patients dying in hospitals with no loved ones present. Ever resilient NHS staff found innovative and new ways to communicate with families losing loved ones, whilst responding to the fast-paced guidance coming out from the centre, responding to an ever-changing situation. The impact of these changes continues to be felt.

Looking ahead

Looking to the future, at the time of writing, the third round of NACEL is underway. Participation is high, and we have added a new staff reported measure to the audit. The findings will be illuminating, given what we have all just been through, as a society and as individuals, personally and professionally. We hope that this early comparative data will help to identify priority areas for improvement, and to enable energies to be focused on areas of greatest need. We are also running an audit of mental health inpatient providers for the first time and applying the NACEL tools to end of life care in these settings.

NACEL will continue to evolve in response to ongoing collaboration and feedback. We anticipate that the growing emphasis on continuous, more frequent reporting for national audits will feature, and that the strong voice calling for extending the audit to the care of people dying outside of a hospital setting may be included in future commissioning rounds. We hope to concentrate on key metrics only which will provide acute, community and mental health providers with the evidence for local service and quality improvement.

With thanks

We would like to take this opportunity to thank all of those who have contributed to NACEL, as respondents and participants, and to Professor Bee Wee, National Clinical Director for End of Life Care, NHS England & NHS Improvement, the Patients Association, as well as the NACEL Steering, Advisory and Mental Health Reference Groups, the latter steered by Dr Anushta Sivanantham, NACEL’s Mental Health Clinical Lead.