Patient involvement vital in end of life care

19 September 2013
A new report providing a picture of the level and quality of patient involvement in decisions made by palliative care social workers has been published today.

'Getting It Right, End of life care and user involvement in palliative care social work', which Dying Matters contributed to, provides a new picture of service user involvement in the UK and identifies both the drivers and the constraints in palliative care policy and practice.

The survey and accompanying report was commissioned by the Association of Palliative Care Social Workers (APCSW) following a challenge by Dame Barbara Monroe, Chief Executive of St. Christopher’s Hospice, at their annual conference in 2012. Dame Barbara highlighted the importance of palliative care social work strengthening its evidence base to better secure its future.

The survey reveals that most social workers feel user involvement is important not just for patients and their families but for their own work and the work of the hospice movement overall.  However, it also identified a lack of consistency as to what is meant by user involvement, with a disparate range of activities being included under the heading. There also seems to be some noticeable gaps in user involvement in services; in particular, very little user involvement is reported in audit and education, planning, evaluation and research.

Many examples of good user involvement are identified in the report, including: the creation of a dedicated user involvement post; encouraging service users to give their views; the appointment of an independent service user facilitator and the setting up of service user advisory groups. Other initiatives included parents being involved in a research project and relatives no longer being asked to leave the bedside when a patient at end of life is being turned.

The social workers questioned are clear about the drivers needed to take forward user involvement, particularly the importance of commitment at a senior level, as well as among practitioners. However, social workers feel that pressures on staff caused by heavy workloads and cutbacks make it difficult for them to find the time to develop user involvement and the gains that have been achieved may be put at risk despite their acknowledged benefits.

The report concludes that user involvement must be ensured continued priority in palliative care social work, education, policy, services and practice. Recommendations include: more informed and rigorous debate about the meaning
of ‘user involvement’; more education and training about user involvement both in social work courses; developing of a more systematic approach to increasing user involvement.

In a joint foreword for the report, Eve Richardson, Chief Executive of Dying Matters and the National Council for Palliative Care:  "We hope that this report will inspire palliative care social workers, especially those who feel daunted and immobilised by the enormity of the task, to ‘start small’. Create informal networks and learn from each other and reflect on the difference that involving people has made.

"We don’t always get it right at the end of life or in the way that we involve service users, but we can always learn from experiences and make things better for the future. Remember that for the person who is dying we only have one chance to get it right and also for loved ones left behind."

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