Written question WQ88172

The Welsh Government is aware of the publication ‘When end of Life Care goes Wrong’ by the Lords and Commons Family and Child Protection Group and we are sorry to learn about the circumstances outlined in each of the case studies, particularly the three Welsh-based studies.

The Liverpool Care Pathway was never formally adopted in Wales, however it is important we learn from any failings identified. I have therefore asked the National Programme Board for Palliative and End-of-Life Care to review the Welsh case studies, and where relevant, translate these learnings into actions in its forward work programme.

Our overall vision for end-of-life care in Wales is set out in the Palliative and End-of-Life Care Quality Statement, published in October 2022. It describes what good end-of-life care services should look like and its implementation is being overseen and monitored by the National Programme Board for Palliative and End-of-Life Care and Welsh Government officials.

Mechanisms and tools being used to monitor implementation of the quality statement include: the end-of-life care data dashboard, the National Audit for Care at the End of Life (NACEL), patient reported outcome measures (PROMS), patient reported experience measures (PREMS) and Health Inspectorate Wales (HIW) and Care Inspectorate Wales (CIW) reports.

The NHS Executive is still developing its website, but the most relevant policies and procedures being used in healthcare settings in Wales are already listed in the end-of-life care internet pages. This will continue to be kept under review and regularly updated as new policies and procedures are developed.

There are arrangements in place if people and families have concerns about ongoing treatment. In the first instance, concerns should be directed to the staff involved with their care as soon as possible – they will try to resolve concerns immediately. If this does not help, or if people do not wish to speak with staff, they can speak with the patient experience teams or Patient Advice and Liaison Service (PALS) or equivalent. Formal complaints will be looked at through the NHS Wales Putting Things Right process: NHS Wales complaints and concerns: Putting Things Right | GOV.WALES.

Health boards and NHS trusts have well-established complaints processes in place to support families with any concerns or complaints. Health boards also have bereavement teams in place who can support bereaved families through the complaint process or signpost them to further support should this be needed.

Llais continues the work of community health councils in providing advocacy and support to patients and their families when they wish to make a complaint about their care. This service has recently been extended to include social care provision, which can be accessed by any patient of family receiving end of life care they are not happy with.

There are no current plans to introduce a national register of cases where end-of-life care has fallen below standards or breaches guidelines in Wales, but incidents are recorded through datix (a software system that collects and manages data on incidents, risks, complaints, claims, and other aspects of health and care). Work is also ongoing with Civica Experience to develop a national palliative care survey.

We have set up a strategic group to provide clear leadership and strategic direction for all aspects of advance and future care planning. It reviews and updates Welsh clinical policy for DNACPR every two years. It has also created online resources to guide people through advance and future care planning decisions, CPR and DNACPR.

We are considering what further actions can be taken to support advance care planning as part of our work to develop our frailty quality statement.