“A Good Send-Off?” Patients’ and Family’s Experiences of End of Life Care. One year on (March 2021)

What impact has our report had to date?

Our earlier report, published in September 2020, found that End of life care was not a dignified and well-arranged experience for many. The sensitivity and dignity of individual care planning that we would expect was not always provided. Our ten recommendations were accepted in full by the NHS with a pledge to improve the care pathway and correct the elements of personal insensitivity and absence of coordinated planning that we found

Since we published our report, some formal processes have taken place to embed our report findings into strategy and policy, which provides confidence that having quality end of life care and dying well remains high on statutory agencies agendas.

1. On 3^rd September 2020, the Clinical Commissioning Group (CCG) formally responded to the Healthwatch report, accepting that all of our recommendations were appropriate and reasonable.

2. In October 2020, the report was presented to the Patient Experience Panel and the Quality Assurance Board at the BSUH, which is a strategic forum attended by senior Trust departmental leads. The Board agreed “to improve the care pathway and correct the elements of personal insensitivity and absence of care planning that (Healthwatch) found when talking to patients and families”. A formal response from the Trust can be read on page 4 of our initial report.

3. In November 2020, the Health and Wellbeing Board received the report and proposed that it formed part of their ‘Dying Well’ Joint Health and Wellbeing Strategy delivery plan. They asked for it to be brought back to the Board to monitor progress on the 23^rd March 2021.

4. In March 2021, a report was brought back to the Health and Wellbeing Board by the CCG updating the committee on actions emanating from the Healthwatch recommendations. The update included work in place to avoid unnecessary hospital admissions, fast track domiciliary care, future commissioning intentions and work on training of staff and building networks on end of life care. The report was noted, and can be found here.

5. Our report has also been presented twice to the CCG GP practice leads End of Life Gold Standards Framework Coordinators meeting:  and to the research team at The Shore-C Cancer Research Centre at Sussex University, a centre of excellence on cancer.

Conclusions and next steps

Whilst some headway has been made, and there has been a recognition of the issues, in most areas, work to improve end of life care is in its infancy or in process rather than embedded.

Some planned improvements in end of life care have also stalled in part due to the emergence of the COVID-19 pandemic. Notwithstanding, COVID-19 has highlighted how important it is to have a good send-off: and the impetus to deliver this remains with staff in services most closely involved in end of life care.

Healthwatch will continue to review and compare progress made against our recommendations. Once we can resume face-to-face contact, Healthwatch will continue its programme on end of life with a focus on frail older people. In the meantime, we continue to reflect views of patients and families on the End of Life Steering Group.