Resuscitation Council (UK)
ReSPECT

Consultations

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Progress update: October 2016

The ReSPECT form and documents have been discussed with patient focus groups and have undergone initial usability testing in four pilot sites: 

  • an acute hospital
  • a hospice (inpatient and community services)
  • a nursing home
  • a paediatric ICU and palliative care service (involving in-patients and community)

Efforts are being made to achieve usability testing also in general practice.

These processes have provided useful feedback that will inform further, relatively minor, changes to the form and its supporting documents, and have emphasised the importance of having adequate training in place (supported by adequate educational materials) before the ReSPECT process and form are used in clinical practice. However, they have not identified any major obstacles to introduction of the ReSPECT process in the relatively near future. The form was found to be useable with patients and all the sites would be willing to implement it in their organisations.  

The national Working Group met in late September to discuss the findings and, together with the HELIX Centre, will make minor refinements to the form and its supporting materials, and develop additional educational materials and an implementation guide to support all health and care professionals in the adoption and implementation of the ReSPECT process. 

The working group recognises the importance of robust evaluation to underpin the widespread clinical use of this process and a large NIHR funded evaluation study is underway in a number of acute settings. Options are being explored for wider integrated community evaluation and to identify how local areas and healthcare communities could be encouraged and supported to adopt a Quality Improvement approach to implementation meantime.

The Working Group will meet again in early January 2017 and aims to make the form and supporting materials available for adoption by local health communities from February 2017. 

Purpose
    
The ReSPECT (formerly known as ECTP) Working Group was established in February 2015 to work collaboratively and build on major work already undertaken to develop a national form to record anticipatory decisions about CPR and other life-sustaining treatment, and to guide decision-making in an emergency situation in which the person lacks capacity.

The aims of the Working Group are to:
     
  • establish the scope of the project and any resulting documents;
  • identify and review examples of evidence-based best practice (national and international)
  • involve patient and carer groups and other relevant stakeholders;
  • collaborate and contribute to developing a national form that is easy to recognise and records anticipatory decisions about CPR and about other aspects of a person’s care or treatment if they become unwell (including but not limited to other life-sustaining    treatment) in the context of a broader plan;
  • ensure that the form is person-centred and can be used for all individuals of all ages;
  • ensure that the form is developed with input from a wide range of stakeholders and is acceptable to patients, those important to them, healthcare professionals, carers and other members of the public;
  • plan the implementation to ensure that the form crosses geographical and organisational boundaries and is recognised in a full range of healthcare settings;
  • develop plans to reduce the current negative perception of DNACPR decisions and to achieve public engagement for successful implementation and acceptance of a national form;
  • establish realistic timelines for development, pilot of, and implementation of the national form.

Membership

Two Co-Chairs (David Pitcher from the RC (UK) and JP Nolan from the RCN) were selected from members of the Working Group to represent a broad spectrum of interests. There is no limit to the number of members but this should be kept to a manageable number. Representation will be invited from the following:

  • Resuscitation Council (UK)
  • British Medical Association
  • Royal College of Nursing
  • Patient/public
  • Association for Palliative Medicine
  • Royal College of Paediatrics and Child Health 
  • Intensive Care Society
  • General Medical Council
  • Nursing and Midwifery Council
  • Association of Ambulance Chief Executives/JRCALC
  • Royal College of General Practitioners 
  • Royal College of Anaesthetists  
  • Royal College of Physicians 
  • Royal College of Surgeons 
  • College of Emergency Medicine
  • Paediatric Intensive Care Society
  • NICE
  • Community Nursing
  • Learning Disability
  • Care Quality Commission
  • Resuscitation Officer
  • Professional Record Standards Body


This list is not exhaustive.

Meetings and working methods

Half-day face-to-face meetings will be held initially, with additional full-day meetings and telephone conference calls/email discussions as required.  Face-to-face meetings will normally be held in London at the office of the Resuscitation Council (UK) or Royal College of Nursing.  The Co-Chairs will alternate chairing the meetings and be responsible for setting the agenda.  The meeting papers will be circulated electronically to the Working Group at least one week in advance of the meeting and members should bring hard copies of the documents to the meeting. Each member will declare and record any personal conflicts of interest (COI), respect confidentiality, and will undertake and promote the activities that are in the best interests of the Working Group. Individual members will be responsible for carrying out tasks delegated to them and for reporting back to the Working Group.  The Working Group will provide timely information and publish regular updates on progress.
The method used to arrive at recommendations will be based on review and discussion of the evidence by the Working Group until consensus is achieved. The Chairs must ensure that each individual on the Working Group can present and debate their views, and that discussions are open and constructive. All members of the Working Group must agree to endorse any recommendations. If they cannot achieve consensus, this should be made clear in the final wording of the recommendation.  The Working Group will agree the timeline for publication together with a communications strategy.

The RC (UK) and RCN will provide, wherever possible, administrative support and the RC (UK) will pay for reasonable travel expenses for attendance at face-to-face meetings.  Where funding is required for major outgoings (such as professional legal fees, development of educational material, additional resources) alternative sources will be pursued by members of the Working Group.

 
Name 
 Representing
David Pitcher (Co-Chair)
Resuscitation Council (UK)
Royal College of Physicians
Juliet Spiller (Co-Chair)
NHS Scotland and Scottish Government
Amanda Cheesley
Royal College of Nursing. Professional Lead for Long Term Conditions and End of Life
Serena Cottrell
Resuscitation Council (UK)
Child and Young Persons Advanced Care Plan Collaborative
Zoe Fritz
Royal College of Physicians
David Gabbott
Resuscitation Council (UK)
Royal College of Anaesthetists
Rob George
Association of Palliative Medicine of Great Britain and Ireland
Sam Guglani
Royal College of Radiologist
Sarah Mitchell
Resuscitation Council (UK)
Bill Beeby
British Medical Association
Gavin Perkins
Resuscitation Council (UK)
Intensive Care Society
Faculty of Intensive Care Medicine
Claud Regnard
Palliative Care Medicine
(St. Oswald’s Hospice)
NESCN Deciding Right
Caroline Stirling
London-wide End of Life Clinical Leadership group
Association for Palliative Medicine
UCLPartners
Viv Cumin
Patient representative
Dhushy Surendra Kumar
JRCALC
Cathryn James
Paramedics
Association of Ambulance Chief Executives
Simon Brown
Royal College of General Practitioners
Catherine Hayhurst
Royal College of Emergency Medicine
Marie-Theresa Massey
Community Nursing
Lesley Meech
Care Quality Commission
Peter Davies
Care Quality Commission
Peter-Marc Fortune
Paediatric Intensive Care Society
Royal College of Paediatrics and Child Health
Sharon Burton
General Medical Council
Alex Goodwin
NCEPOD
Sam Ahmedzai
NCGC – NICE guidelines
RCP – End of life audit
Annette Gilmore
Professional Record Standards Body (PRSB)
Community Nursing
Simon Chapman
National Council for Palliative Care
TBC
Mencap
Bob Ewings
Patient representative
Madeleine Wang
Patient representative
Alison Richardson
NIHR CLAHRC Wessex work programme: Treatment Escalation Plans
Michael Mercer
South Devon
Isabelle Hamilton-Bower
Resuscitation Officer
Paul Buss
NHS Wales
Corrina Grimes
Department of Health, Social Services and Public Safety in Northern Ireland
Claire Hawkes
Project Manager
Colville Laird
RCSEd Faculty of Pre-hospital care


Progress update: June 2016

Following the public consultation and interviews to assess how the potential use of the Emergency Care and Treatment Plan (ECTP) in a variety of settings the Working Group has made a number of changes to the layout and wording of the document to address the issues highlighted.

The title of the document has been changed from ECTP to ReSPECT (Recommended Summary Plan for Emergency Care and Treatment). The main reasons for this are (1) to make it clear to all that this is recording recommended care and treatment for a future emergency (the final clinical decisions rest with the professionals dealing with any emergency) and that (2) it is a summary and not a substitute for more detailed plans. 

The ReSPECT process aims to respect patient preferences and respect clinical judgment through shared conversations between a person and their healthcare professionals. One of its principal aims is to make sure people understand the care and treatment options that may be available to them and that may work in a medical emergency, and to allow them to make healthcare professionals aware of their preferences.

The latest version of the ReSPECT form, designed in collaboration with the Helix Centre, will be reviewed by focus groups and used in a pilot study to be carried out in four UK sites for one month. The Working Group will meet next in late September to review feedback from these evaluations and to decide on any further changes that may be needed. An important aim of the project is to remain responsive to ongoing feedback as it continues to develop.

Progress update: April 2016

The public consultation inviting feedback on the Emergency Care and Treatment Plan (ECTP) prototype and supporting information documents closed on 29 February 2016. The purpose of this was to gain feedback from the public and healthcare professionals. Over 1000 responses were received of which 10% were from lay people, 80% from healthcare professionals and the remaining 10% from patient and social care organisations and professional organisations.

Over 91% of respondents agreed that the ECTP is a good idea. A total of fourteen interviews with members of the public, paramedics, senior nurses (nursing home, community matron and palliative care), paediatricians, physicians (acute and palliative care), general practitioners and surgeons were also conducted. The aim of the interviews was to assess how well the ECTP document could be used in a variety of settings to record patients' preferences and clinical decisions following discussion or, in the case of paramedics, guide their practice in an emergency situation. A range of, and in some instances, very differing views were expressed in response to the survey questions. This feedback, on the ECTP and supporting information documents has been reviewed and collated into the main themes listed below and these are being considered by the Working Group:

  • A wish for clearer messaging and communication on the ECTP itself and in the supporting documents (e.g. the purpose of the ECTP, clarity for sections recording patients’ preferences and those recording clinical decisions, how it interfaces with other systems, use for children)
  • The legal status of the ECTP and the decisions recorded on it, and other legal aspects such as compliance with mental capacity legislation
  • Design of the plan (e.g. colour, layout, style)
  • Education materials and resources for healthcare professionals.

The Helix Centre (a joint initiative between the Royal College of Art and Imperial College London) specialises in the design of documents to maximise their effectiveness when used to address complex healthcare issues and has volunteered its expertise, time and resources to refine and develop the ECTP to try to ensure that it meets the needs of both patients and healthcare professionals.  Work is already underway on this and the amended material will be presented to the Working Group when it meets again at the end of May. Two patient focus groups have been arranged to review the revised material and to provide feedback and advice to the Working Group. 

Progress update: February 2016

The  ECTP and decision-making process must meet the needs of all age groups, all patients, all healthcare professionals and all clinical settings, ranging from people’s own homes to an intensive care unit.

Six documents were available for comment via Pubic Consultation which closed on Monday 29 February 2016. Feedback will be grouped according to the section of documents they refer to and themes will be identified. This information will be presented to the Working Group at their next meeting towards the end of March and the documents will be revised accordingly. Pilot sites and educational resources will be then be identified.

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