Acknowledgements
We would like to thank the staff at CHANGE for their support with this project; Carol Beardmore of SNOOP for her comments on the family carers interview topic guide, and Christopher Porter from North Yorkshire Health Task Group for reviewing the easy-read resources. Members of the project lay advisory group and members of the learning disability reference group for their invaluable contribution throughout the study. The study steering committee who provided oversight of the project. Victoria Tortziou-Brown OBE, Senior Clinical Lecturer in Primary Care, Queen Mary University London (Chair). Juliet Spiller, Consultant in Palliative Medicine, Marie Curie Hospice, Edinburgh. Nick Darlington, PPI member. Paula DuRand, Manager, Kineton Care Home. Victoria Donnelly, Strategic Health Facilitator, Learning Disabilities Health Support Team, Bradford District Care NHS Foundation Trust. James Cant, Chief Executive Officer, RCUK. Sara Shaw, Associate Professor, Nuffield Department of Primary Care Health Sciences, University of Oxford. The West Midlands, East Midlands and Yorkshire and Humber NIHR Clinical Research Networks. NIHR ENRICH teams in the West Midlands, East Midlands and Yorkshire and Humber. Finally, we would like to thank all general practices and care homes that took part in the study and the individual participants across all work packages for sharing their time and experiences.
CRediT contribution statement
Anne-Marie Slowther (https://orcid.org/0000-0002-3338-8457): Conceptualisation (lead), Formal analysis, Funding acquisition (lead), Investigation, Supervision (lead), Writing – original draft (lead), Writing – reviewing and editing (lead).
Jenny Harlock (https://orcid.org/0000-0002-2300-750X): Conceptualisation, Formal analysis, Funding acquisition, Investigation, Supervision (PPI lead), Writing – original draft, Writing – reviewing and editing.
Celia J Bernstein (https://orcid.org/0000-0001-5854-7306): Formal analysis, Investigation, Writing – original draft, Writing – reviewing and editing.
Katie Bruce (https://orcid.org/0009-0007-1460-0057): Data curation, Investigation, Project administration, Writing – reviewing and editing.
Karin Eli (https://orcid.org/0000-0001-9132-8404): Formal analysis, Investigation, Writing – original draft, Writing – reviewing and editing.
Caroline J Huxley (https://orcid.org/0000-0001-9755-6096): Formal analysis, Investigation, Writing – original draft, Writing – reviewing and editing.
Jacqui Lovell (https://orcid.org/0000-0001-8884-1995): Formal analysis, Writing – reviewing and editing, Investigation.
Claire Mann (https://orcid.org/0000-0003-2281-7970): Formal analysis, Investigation, Writing – original draft, Writing – reviewing and editing.
Angela Noufaily (https://orcid.org/0000-0001-8522-6591): Conceptualisation, Formal analysis, Funding acquisition, Writing – reviewing and editing.
Sophie Rees (https://orcid.org/0000-0003-4399-2049): Investigation, Writing – reviewing and editing.
Julia Walsh (https://orcid.org/0000-0002-9787-0349): Investigation, Writing – reviewing and editing.
Chris Bain (https://orcid.org/0009-0001-1786-2956): Conceptualisation, Funding acquisition, Writing – reviewing and editing.
Hazel Blanchard (https://orcid.org/0009-0006-4958-6059): Conceptualisation, Funding acquisition, Writing – reviewing and editing.
Jeremy Dale (https://orcid.org/0000-0001-9256-3553): Conceptualisation, Funding acquisition, Writing – reviewing and editing.
Paramjit Gill (https://orcid.org/0000-0001-8756-6813): Conceptualisation, Funding acquisition, Writing – reviewing and editing.
Claire A Hawkes (https://orcid.org/0000-0001-8236-3558): Conceptualisation, Formal analysis, Funding acquisition, Writing – reviewing and editing.
Gavin D Perkins (https://orcid.org/0000-0003-3027-7548): Conceptualisation, Funding acquisition, Writing – reviewing and editing.
Rachel Spencer (https://orcid.org/0000-0003-2578-6954): Conceptualisation, Funding acquisition, Writing – reviewing and editing.
Chris Turner (https://orcid.org/0000-0002-5150-8109): Conceptualisation, Funding acquisition, Writing – reviewing and editing.
Amy M Russell (https://orcid.org/0000-0002-8891-9059): Conceptualisation, Formal analysis, Funding acquisition, Supervision, Writing – original draft, Writing – reviewing and editing.
Martin Underwood (https://orcid.org/0000-0002-0309-1708): Conceptualisation, Formal analysis, Funding acquisition, Supervision (quantitative lead), Writing – original draft, Writing – reviewing and editing.
Frances Griffiths (https://orcid.org/0000-0002-4173-1438): Conceptualisation, Formal analysis, Funding acquisition, Investigation, Supervision (qualitative lead), Writing – original draft, Writing – reviewing and editing.
Beth Weston: Project administration. Stephanie Selwood: Learning disability work package, Funding acquisition and Easy read document preparation. Dominique Burley: Learning disability work package, Funding acquisition and Easy read document preparation. Imogen Day: Other contributions (recruitment and facilitation, learning disability workshops). Shaun Webster MBE: Other contributions (recruitment and facilitation, learning disability workshops). Tauseef Akram: Other contributions: Learning disability reference group. Kenneth Fletcher: Other contributions: Learning disability reference group. Ray Hurst: Other contributions: Learning disability reference group. Jamie Leigh-Marshall: Other contributions: Learning disability reference group. Jacky Anne Billings: Other contributions: Project PPI oversight; lay advisory group. Deb Smith: Other contributions: Project PPI oversight; lay advisory group. Elyas Khalifa: Other contributions: Project PPI oversight; lay advisory group. Susan Jenkins: Other contributions: Project PPI oversight; lay advisory group. Graham Howkins: Other contributions: Project PPI oversight; lay advisory group.
Disclosure of interests
Full disclosure of interests: Completed ICMJE forms for all authors, including all related interests, are available in the toolkit on the NIHR Journals Library report publication page at https://doi.org/10.3310/NVTF7521.
Primary conflicts of interest: Anne-Marie Slowther: Received grants from the National Institute of Health and Care Research (NIHR) for the conduct of the study and grants from Health and Social Care Delivery Research programme (17/99/34; 15/15/09) and NIHR Health Technology Assessment programme (NIHR131105; NIHR127489) outside the submitted work and was co-author on an evidence synthesis of the do not attempt cardiopulmonary resuscitation decision-making that informed the development of the ReSPECT process. She was a member of the Advisory Board for the Wellcome-funded research programme ‘Balancing Best Interests in Healthcare, Ethics and Law’ and until 2023 was a member of the Board of Trustees, UK Clinical Ethics Network, and member of the Board of Trustees, Institute of Medical Ethics. Since March 2024 she is a member of the RCUK ReSPECT wider stakeholder group.
Jenny Harlock: Received grants from NIHR for the conduct of the study, and grants from Health and Social Care Delivery Research programme (18/02/27) and NIHR Health Technology Assessment programme (13/15/93) outside the submitted work.
Celia Bernstein: No conflict of interest declared.
Katie Bruce: No conflict of interest declared.
Karin Eli: No conflict of interest declared.
Caroline J Huxley: No conflict of interest declared.
Jacqui Lovell: No conflict of interest declared.
Claire Mann: No conflict of interest declared.
Angela Noufaily: Received grants from NIHR for the conduct of the study.
Sophie Rees: No conflict of interest declared.
Julia Walsh: No conflict of interest declared.
Chris Bain: Received grants from NIHR for the conduct of the study and he is Chief Executive of Health Watch Warwickshire.
Hazel Blanchard: Received grants from NIHR for the conduct of the study.
Jeremy Dale: Received grants from NIHR for the conduct of the study, and grants from NIHR Research for Patient Benefit programme (20/00/78), NIHR Health and Social Care Delivery programme (15/32/31, 20/43/54, 20,07,78, PB-PG-1217-20033, 15/145/04), NIHR Health Technology Assessment programme (01/14/10) outside the submitted work.
Paramjit Gill: Received grants from NIHR for the conduct of the study, and grants from NIHR Health and Social Care Delivery Research (13/48/66), NIHR Research for Patient Benefit programme (PB-PG-1217-20038), NIHR Health Technology Assessment programme (15/06/87), NIHR Policy Research programme (20/26/70, 20/09/37), NIHR Programme grants for applied research (RP-PG-0614-20004) and grants from NIHR Applied Research Collaboration West Midlands outside the submitted work. He is a NIHR Senior Investigator.
Claire M Hawkes: Received grants from NIHR for the conduct of the study and grants from NIHR Health and Social Care Delivery Research programme (references 13/16/23; 15/15/09) and NIHR Research for Patient Benefit programme (NIHR20/43/60) and NIHR Health Technology Assessment programme (13/42/57) outside the submitted work.
Gavin D Perkins: Received grants from MIHR for the conduct of the current study and grants from NIHR Health Technology Assessment programme (12/127/126, 14/152/14, NIHR128086, NIHR131105, NIHR131430, 14/150/85, NIHR154501, NIHR154798, 15/08/40, 17/147/33, NIHR156500, NIHR130454, NIHR132871, NIHR154796 NIHR128374, NIHR150027, NIHR155119, NIHR131533, 17/16/04, 17/136/10, 15/116/03, 13/143/02, 15/99/02, 16/93/01), Health and Social Care Delivery Programme (15/15/09, 17/99/34, NIHR127368, NIHR131623, NIHR153264, 14/156/23), ad hoc research grants (COVID-19-RSC) outside the submitted work.
Rachel Spencer: Received grants from NIHR for the conduct of the study, and a personal NIHR Advanced Fellowship award (12/73/68, 30/13/28). She is a member of the Executive Board of the Society for Academic Primary Care.
Chris Turner: Received grants from NIHR for the conduct of the study. He has received fees for multiple lectures in NHS Trusts and professional organisations on the importance of behaviour at individual and organisational team level. He has received a grant from the University of Warwick to undertake simulation studies on communication in resuscitation while wearing FFP3 personal protective equipment.
Amy M Russell: Received grants from NIHR for the conduct of the study and grants from the Wellcome Trust (personal fellowship), the Arts and Humanities Research Council, and the British Medical Association outside the submitted work. She was a Health and Social Care Delivery Research programme Associate Board member.
Martin Underwood: Received grants from NIHR for the conduct of the study and grants from NIHR Health Technology Assessment programme (13/28/03, 12/87/68, 16/77/02, 16/167/56, 13/20/46, 13/28/71, 16/61/18, 13/43/98, 13/31/629, 13/146/02, 17/129/02, 14/224/04), Programme Development Grants programme (20/26/14), Programme grants for applied research (RP-PG-2012-2018) and Health and Social Care Delivery programme (15/15/09), outside the submitted work; grants from the Australian National Health and Medical Research Council, the Norwegian Medical research council, Versus Arthritis, Stryker Ltd and Serco Group plc. He also reports personal fees from Clinvivo Ltd (Tenterden, UK), for which he is also a director and shareholder. Until March 2020, he was an editor of the NIHR journal series and a member of the NIHR Journals Library Editors Group, for which he received a fee. Until March 2021, he was an NIHR Senior Investigator.
Frances Griffiths: Reports grants from NIHR for the conduct of the study and grants from NIHR Health and Social Care Delivery Research programme, Health Technology Assessment programme (15/15/19), Programme grants for applied research (RP-PG-2012-2018, PTC-RP-PG-0213-20002), Artificial Intelligence for long-term conditions (20/39/86) Research and Innovation for global health transformation (20/01/32) outside the submitted work.
Patient data statement
This work uses data provided by patients and collected by the NHS as part of their care and support. Using patient data is vital to improve health and care for everyone. There is huge potential to make better use of information from people’s patient records, to understand more about disease, develop new treatments, monitor safety and plan NHS services. Patient data should be kept safe and secure, to protect everyone’s privacy, and it is important that there are safeguards to make sure that they are stored and used responsibly. Everyone should be able to find out about how patient data are used #datasaveslives. You can find out more about the background to this citation here: https://understandingpatientdata.org.uk/data-citation
Data-sharing statement
All data requests should be submitted to the corresponding author for consideration. Access to anonymised data may be granted following review. The data used in the public survey analyses are from the NatCEN social research’s British Social Attitudes Survey © National Centre for Social Research 2023. Archived data are available at ukdataservice.ac.uk. For archive or dataset requests, please email BSA@natcen.ac.uk
Ethics statement
This research received ethics approval from the London South East Research Ethics Committee (REC reference 21/LO/0455; date of approval 17 June 2021) and HRA approval 27 July 2021. The research also received approval from HRA Confidentiality Advisory Group under Regulation 5 of the Health Service (Control of Patient Information) Regulations 2002 (‘section 251 support’) (CAG reference 21/CAG/0089 Provisional approval 21 July 2021, final approval 10 August 2021. Copies of the relevant approvals and table of amendments is included in Report Supplementary Materials 3 and 4).
Information governance statement
The University of Warwick is committed to handling all personal information in line with the UK Data Protection Act (2018) and the General Data Protection Regulation (EU GDPR) 2016/679. Under the Data Protection legislation the University of Warwick is the Data Controller for this study. You can find out more about how the University handles personal data, including how to exercise your individual rights and the contact details for the University Data Protection Officer here https://warwick.ac.uk/services/legalandcomplianceservices/dataprotection/ Contact the data protection officer at DPO@warwick.ac.uk. The University also acted as Data Processor for all study research data collected. Data was processed under the University policy and processes for handling personal data, and research related data. Participating GP practices acted as data processors for patient data for the purposes of recruitment of participants. All participating practices were certified as compliant with NHS Digital Data Security and Protection Toolkit. CHANGE acted as the data controller and processor for personal data relating to recruitment of participants for the workshops and reference group members in work package four (co-production of materials with people with a learning disability). The Advonet group is committed to handling all personal information in line with the UK Data Protection Act (2018) and the General Data Protection Regulations (EU GDPR 2016/670). For more information, please see our policy. https://advonet.org.uk/wp-content/uploads/2021/11/Data_Protection_policy_and_procedures.pdf or speak to a member of our team (01132440606).
Department of Health and Social Care disclaimer
This publication presents independent research commissioned by the National Institute for Health and Care Research (NIHR). The views and opinions expressed by the interviewees in this publication are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, MRC, NIHR Coordinating Centre, the Health and Social Care Delivery Research programme or the Department of Health and Social Care.
This monograph was published based on current knowledge at the time and date of publication. NIHR is committed to being inclusive and will continually monitor best practice and guidance in relation to terminology and language to ensure that we remain relevant to our stakeholders.
Publications
Underwood M, Noufaily A, Blanchard H, Dale J, Harlock J, Gill P, et al. GPs views on emergency care treatment plans: an online survey. BJGP Open 2024;2023:0192. https://doi.org/10.3399/BJGPO.2023.0192
Eli K, Harlock J, Huxley CJ, Bernstein C, Mann C, Spencer R, et al. Patient and relative experiences of the ReSPECT process in the community: an interview-based study. BMC Prim Care 2024;25:115. https://doi.org/10.1186/s12875-024-02283-x
Russell AM, Lovell JM, Harlock J, Griffiths F, Slowther A. Autonomy and advocacy in planning for a medical emergency: Adults with a learning disability and family carers experiences and perceptions of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process. version 2; peer review: 1 approved, 2 approved with reservation NIHR Open Res 2024;4:8. https://doi.org/10.3310/nihropenres.13555.2
Underwood M, Noufaily A, Bain C, Harlock J, Griffiths F, Huxley C, et al. Public attitudes to emergency care treatment plans: a population survey of Great Britain. BMJ Open 2024; 2024 Sep 3;14:e080162. https://doi.org/10.1136/bmjopen-2023-080162. PMID: 39313284; PMCID: PMC11429361.
Slowther AM, Bernstein CJ, Huxley C, Harlock J, Eli K, Mann C, et al. Using the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) in UK general practice: a qualitative exploration of the experiences of general practitioners, community-based nurses, care home staff, patients and their relatives. Br J Gen Pract 2024 Sep 20:BJGP.2024.0248. https://doi.org/10.3399/BJGP.2024.0248; Epub ahead of print. PMID: 39304311.
Huxley CJ, Eli K, Hawkes CA, Griffiths F, Underwood M, Perkins GD, et al. Are completed ReSPECT plans facilitating person-centred care? An evaluation of completed plans in UK general practice. Resusc Plus 2024 Sep 21;20:100780. https://doi.org/10.1016/j.resplu.2024.100780; PMID: 39364226; PMCID: PMC11447405.
Eli K, Bernstein C, Harlock J, Huxley C, Walsh J, Blanchard H, et al. Using the Recommended Summary Plan for Emergency Care and Treatment in a community setting: does it facilitate best interests decision-making? J Med Ethics 2024 In press.
Disclaimers
This article presents independent research funded by the National Institute for Health and Care Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care.