Vaughan Gething AC, Cabinet Secretary for Health and Social Services

First published:
12 December 2018
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I am updating the public on the work that we are doing in Wales on the issue of Advance Care Planning (ACP). The Welsh Government is committed to ensuring people can end their lives in the locations of their choice – whether that is in their own home, in hospital or in a hospice setting. We want everyone to have access to high quality care wherever they live and die, whatever their underlying disease or disability. That is why we continue to provide more than £8m annually to deliver the end-of-life care that people in Wales deserve.

Our joint plan for health and social care in Wales - A Healthier Wales - underlines our commitment. Our plan looks at how we can embed value-based healthcare as the way we measure what matters most to people, ensuring that improvement activity is focused on outcomes. We are continuing to invest in our approach to improving quality, initially focusing our work on the quality cycle affecting six pathways which have an impact on people’s lives. These are: safer medicines management; surgery and surgical pathways; frail elderly care; managing acute illness; equitable health and social care services; & end of life care.  

The End of Life Care Board is committed to this area of work and good progress has already been made across a number of areas. We have a single All-Wales do not attempt cardiopulmonary resuscitation (DNACPR) form; a serious illness conversation training programme; advance care planning website and advance care planning facilitators in Welsh health boards and an All Wales Paediatric Advance Care Plan (PAC-Plan).  Byw Nawr also continues to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. The TalkCPR website and app are repeatedly accessed by healthcare professionals, patients and their loved-ones; and have featured in a number of medical journals.

In addition to these national approaches there is also much good work going on at both regional and local level. Work includes education for GPs to use ACPs in Cardiff; taking community development approaches to ACP in Pembrokeshire to enable people to think about their care plans for the future; and a range of innovative  projects such as the Ceredigion Specialist Palliative Care Poetry Residency – a collection of bilingual poems capturing feelings and emotions and using them as a starting point in training days with all health, social care and third sector staff to discuss the subject of end of life and mortality.

In order to bring this national, regional and local ACP work together, health boards are required to identify a Clinical Lead for ACP and are encouraged to develop ACP facilitator posts. We have appointed an ACP Strategic Planning Lead – Dr Mark Taubert, Clinical Lead for Palliative Care at Velindre NHS Trust and have established a strategic ACP group, which Dr Taubert chairs.

Dr Taubert has been tasked to link up with ACP leads and champions in Wales to collate projects that are happening in different parts of Wales and publish them on the advancecareplan.org.uk website. He will also provide strategic direction and guidance for aspects of ACP across Wales by consulting with specialist leads and existing groups and organisations. The strategic approach includes shaping a specification for a future electronic patient record, taking into account predominantly the existing Code of Practice as a statutory document, plus the new NICE guidelines on ACP as a regulatory guiding principle.

ACP has recently been defined in a white paper by the European Association for Palliative Care (EAPC) to include only individuals with mental capacity, so in Wales we have introduced the term Future Care Planning to also encompass best interest decisions for those individuals who require a care planning approach. The ultimate aim is for an electronic record that allows existing paper or electronic future/advance care plans to be uploaded as electronic documents; enables an e-Form to record future care plan information; includes wishes about CPR and allows direct access by patients to write and submit their own advance care plan, including advance decisions to refuse treatment.

Finally, the strategic lead will hold a Welsh ACP and Future Care Planning conference in 2019 for health and social care practitioners and patients, with representation from Delivery Plan Implementation Groups and Royal Colleges. The conference will help produce guidance for a range of circumstances including ACP for paramedics in the community, ACP in the area of organ donation and ACP in prisons. The aim is for this event to be delivered by generalists for generalists in healthcare, given that opportunities for good advance care planning occur daily in our wards, nursing homes and communities, and not just in specialist palliative care settings.

I hope that that this statement reassures Members that considerable progress has been made and that much more is planned. With the End of Life Care Board, the strategic clinical lead and the ACP Strategic Group overseeing developments Wales is in good place to capitalise on progress and address the missed opportunities highlighted in the Macmillan ACP report published earlier this year.