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Patient and Public Involvement (PPI) – getting local voices heard at national level - by Sarah Bogle

15 June 2016

Lively debate was the order of the day on Thursday 19th May when the CLAHRC Wessex (Complexity at end of life) team hosted a local Patient and Public Involvement (PPI) event in Southampton as part of their Treatment Escalation Plans (TEPs) Project.

 ‘Have Your Say and influence the national work on emergency care and treatment decision-making’, was an opportunity for a small group of people to input their views on a national initiative known as ‘Emergency Care and Treatment Decision-Making’.  Prof Alison Richardson and Dr Susi Lund from the TEP project team attend the national group, co-chaired by the Resuscitation Council (UK) and the Royal College of Nursing (RCN), and who are working to develop and recommend a national form that will guide decision-making on treatment and care for patients who face uncertain recovery or are approaching end of life. The national group is seeking to recommend a form to be used nationwide by November 2016.

 Participants were asked to review a draft version of the form and information documents. Given the sensitive nature of the subject matter, discussions generated some heated debate and comment.

The main message from participants for the national group was whatever time of day, wherever the patient is, the form needs to be easy to understand, it needs to be clear that there has been consent by the patient and/or next of kin and detailed enough to provide instructions that respects and reflects the patient’s wishes.

Reflecting on the event, Sally Dace, a Theme 6 PPI champion commented that ‘we were quite critical at times but…we stayed constructive as it's great to have the opportunity to comment’.

Dr Claire Ballinger, who attended the event both as CLAHRC Wessex PPI lead and in a personal capacity, observed that 'In addition to my Lead PPI role I have family experience of treatment escalation planning, and know how very important this work is from a patient perspective.  The messages from this event about information being easily accessible, the importance of consent, and really listening to patients were all reinforced at our own family meeting with a Lead Supportive Care Nurse'.

All those who attended the event worked hard and their contributions to the discussions drew upon both personal and more general life experience resulting in an interesting and thought provoking afternoon. Participants’ comments have been fed back directly to the national working group.

Many thanks to those involved 

If you want to know more, please contact us on clahrc6@soton.ac.uk. or visit our website http://www.clahrc-wessex.nihr.ac.uk/

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