EN-CAMHS 2: Enhancing CAMHS Referrals
Conditions: No Conditions, Improving Referrals Into NHS CAMHS
Sponsor: Greater Manchester Mental Health NHS Foundation Trust

 
 
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i 
 
EN-CAMHS 2: Enhancing CAMHS Referrals Protocol 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
This project was funded by the National Institute for Health Research Health Services and Delivery 
Research (HS&DR) Programme (NIHR158809). The views and opinions expressed therein are those 
of the authors and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the 
Department of Health. 

 
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RESEARCH REFERENCE NUMBERS 
 
IRAS Number: 
332029 
 
SPONSORS Number: 
Generated by the Sponsor. Enter if applicable 
 
FUNDERS Number: 
NIHR158809 
 
 

 
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SIGNATURE PAGE 
The undersigned confirm that the following protocol has been agreed and accepted and that the 
Principal Investigator agrees to conduct the study in compliance with the approved protocol and will 
adhere to the principles outlined in the Declaration of Helsinki, the Sponsor’s SOPs, and other 
regulatory requirement. 
I agree to ensure that the confidential information contained in this document will not be used for any 
other purpose other than the evaluation or conduct of the investigation without the prior written 
consent of the Sponsor 
I also confirm that I will make the findings of the study publically available through publication or other 
dissemination tools without any unnecessary delay and that an honest accurate and transparent 
account of the study will be given; and that any discrepancies from the study as planned in this 
protocol will be explained. 
 
For and on behalf of the Study Sponsor: 
Signature: 
 
 
 
Date: .2/12/2025 
Name (please print): Natalie Garratt 
 
 
Position: Head of Research & Innovation GMMH 
 
 
 
Principal Investigator: 
Signature:  
 
Date: 
29/10/2025 
Name: (please print): Prof Kathryn Abel  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
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LIST of CONTENTS 
GENERAL INFORMATION 
Page No. 
HRA PROTOCOL COMPLIANCE DECLARATION  
i 
TITLE PAGE  
ii 
RESEARCH REFERENCE NUMBERS 
 
ii 
SIGNATURE PAGE 
iii 
LIST OF CONTENTS  
iv 
KEY STUDY CONTACTS 
v 
STUDY SUMMARY 
viii 
FUNDING 
 
ix 
ROLE OF SPONSOR AND FUNDER 
ix 
ROLES & RESPONSIBILITIES OF STUDY STEERING GROUPS AND INDIVIDUALS   
x 
SECTION  
1. BACKGROUND 
 
1 
2. RATIONALE 
 
2 
3. RESEARCH QUESTION/AIM(S)  
5 
4. STUDY DESIGN/METHODS 
7 
5. STUDY SETTING 
12 
6. SAMPLE AND RECRUITMENT 
12 
7. ETHICAL AND REGULATORY COMPLIANCE 
16 
8. DISSEMINATION POLICY 
19 
STUDY FLOW CHART 
 
21 
9. REFERENCES 
22 
10. APPENDICES 
26 
 
 

 
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KEY STUDY CONTACTS 
Principal Investigator 
Professor Kathryn M Abel 
Professor and Director of the Centre for Women’s Mental 
Health 
Faculty of Biology, Medicine and Health Sciences 
Jean McFarlane Building 
University of Manchester 
Oxford Road 
Manchester 
M13 9PL 
Kathryn.M.Abel@manchester.ac.uk  
Tel: 0161-275-0732 
Study Manager 
Heidi Tranter 
Project Manager and Research Associate 
Greater Manchester Mental Health NHS Foundation Trust 
Rawnsley Building 
Manchester Royal Infirmary 
Oxford Road 
M13 9WL 
heidi.tranter@manchester.ac.uk  
Sponsor 
Natalie Garratt 
Head of Research & Innovation GMMH 
Rawnsley Building 
Manchester Royal Infirmary 
Oxford Road 
M13 9WL 
natalie.garratt@gmmh.nhs.uk  
07342 068227 
Funder(s) 
NIHR HS&DR 
University of Southampton 
Alpha House 
Enterprise Road 
Southampton 
SO1 7NS 
netscomms@nihr.ac.uk  
Tel: 0238-059-7462 
Key Protocol Contributors 
Dr Pauline Whelan (Joint Lead Applicant) 
Co-Director GM.Digital & Senior Research Fellow 
Centre for Health Informatics 

 
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University of Manchester 
Oxford Road 
Manchester 
M13 9PL 
Pauline.Whelan@manchester.ac.uk  
Tel: 07554 227 474 
 
Professor Julian Edbrooke-Childs (Co-Applicant, Digital 
Design expertise) 
Co-Director Evidence Based Practice Unit 
Anna Freud Centre 
The Kantor Centre of Excellence 
4-8 Rodney Street 
London  
N1 9JH 
Julian.Childs@annafreud.org  
 
Dr Rachel Elvins (Co-Applicant, CAMHS expertise) 
Consultant Child and Adolescent Psychiatrist  
Manchester University NHS Foundation Trust 
Harrington Building 
Royal Manchester Children’s Hospital 
Oxford Road 
Manchester 
M13 9WL 
Rachel.Elvins@mft.nhs.uk  
 
Dr Lesley-Anne Carter (Co-Applicant, Evaluation lead) 
Lecturer in Biostatistics  
Centre for Biostatistics 
University of Manchester 
Oxford Road 
Manchester 
M13 9PL 
lesley-anne.carter@manchester.ac.uk  
 
Professor Bernadka Dubicka (Co-Applicant, CAMHS 
expertise) 
Chair of Child and Adolescent Psychiatry & Consultant Child 
and Adolescent Psychiatrist  
Hull York Medical School 
Siwards Way 
York  
YO10 5DD 
bernadka.dubicka@york.ac.uk 

 
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John Sainsbury (Co-Applicant, Innovation expertise) 
Innovation Manager GMMH 
Rawnsley Building 
Manchester Royal Infirmary 
Oxford Road 
M13 9WL 
john.sainsbury@gmmh.nhs.uk 
 
Charlotte Stockton-Powdrell (Co-Applicant, Digital design 
expertise) 
Information Systems Programme Manager 
Centre for Health Informatics 
University of Manchester 
Oxford Road 
Manchester 
M13 9PL 
charlotte.stockton-powdrell@manchester.ac.uk 
 
Professor Penny Bee (Co-Applicant, Qualitative expertise) 
Jean McFarlane Building 
University of Manchester 
Oxford Road 
Manchester 
M13 9PL 
Penny.Bee@manchester.ac.uk 
 
Dr Lamiece Hassan (Co-Applicant, PPIE Lead) 
Research Fellow 
Jean McFarlane Building, University of Manchester 
Oxford Road 
Manchester 
M13 9PL 
Lamiece.Hassan@manchester.ac.uk  
 
Committees 
Study Steering Committee (SSC) – as before? 
 
Project Management Group – if different from above? 
 
 
 
 

 
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STUDY SUMMARY 
 
Study Title 
EN-CAMHS 2: Enhancing CAMHS Referrals 
Internal ref. no. (or short title) 
EN-CAMHS 2 
Study Design 
Mixed methods: Qualitative (focus groups and semi-
structured interviews) and quantitative (usage/engagement 
rates of digital referral tool) 
Study Participants 
Child and Adolescent Mental Health Services (CAMHS) 
Stakeholders who have had experience with the CAMHS 
referral process, including: 
• 
CAMHS staff 
• 
Collaborators 
• 
Children and young people (CYP) 
• 
Key referrers (e.g., GPs, teachers, SENCOs, 
community paediatricians, social workers) 
• 
Parents/carers 
• 
CAMHS commissioners  
• 
Mental Health Leads 
• 
Senior national stakeholders (e.g. NHS England 
senior leaders) 
Trust staff members from different departments, for example, 
clinical IT, digital strategy, Chief Clinical Information Officers 
(CCIOs), research.  
Planned Size of Sample (if applicable) WP1 - 6 focus groups - we aim to recruit 60 stakeholders (6-
10 per group) 
WP2 - onboard 5-8 CAMHS providers, 1-hour workshop with 
each provider (n=25), Accessibility working group n=10, 2 
digital co-design workshops (n=50) 
WP3 - 60 referrers to use the tool, semi-structured interviews 
with 25 referrers 
Follow up duration (if applicable) 
N/A 
Planned Study Period 
01/06/2024 – 30/11/2026 (30 months) 
Research Question/Aim(s) 
 
We aim to develop a simple, clear way for children to get the 
right support for their mental health problems when they need 
it. We aim to solve the problems people told us about in EN-
CAMHS 1 (NIHR 131379) and to improve the quality of 
referrals made to CAMHS.  
Research Questions: 
1. Using the findings from NIHR HS&DR-funded EN-
CAMHS 1 and stakeholder consultation, can we 
develop a set of national standards for digital CAMHS 
referral processes? 

 
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2. Can we translate the prioritised features from EN-
CAMHS 1 of a digitally-led, intelligent CAMHS referral 
process into a usable, acceptable and widely 
accessible platform that is nationally standardised, 
locally adaptable and sustainable? 
 
3. Can we address concerns about digital health equity 
through the newly developed CAMHS referral 
mechanisms? 
 
4. How do referrers, including GPs, school staff and 
children/young people/families perceive the usability 
and acceptability of the digital tool? 
 
5. How do referrers use and engage with the tool? 
 
6. How do rates of successful referrals with the tool 
compare to traditional modes of referral? 
 
FUNDING AND SUPPORT IN KIND 
FUNDER(S) 
(Names and contact details of ALL organisations 
providing funding and/or support in kind for this 
study) 
FINANCIAL AND NON FINANCIALSUPPORT 
GIVEN 
National Institute for Health Research Health 
Services and Delivery Research Programme 
£1,259,268.30 
 
 
ROLE OF STUDY SPONSOR AND FUNDER 
Department of Health definition of a sponsor: An individual, organisation or group taking on 
responsibility for securing the arrangements to initiate, manage and finance a study. A group of 
individuals and/or organisations may take on sponsorship responsibilities and distribute them, by 
agreement, amongst the members of the group, provided that, collectively, they make arrangements 
to allocate all the responsibilities that are relevant to the study.  
Summary of Sponsor Responsibilities: 
• 
Taking responsibility for putting and keeping in place arrangements to initiate, manage and 
fund the study. 
• 
Confirming that everything is ready for the research to begin. 
• 
Satisfying itself the research protocol, research team and research environment have met the 
appropriate scientific quality assurance standards. 
• 
Satisfying itself the study has ethical approval before relevant activity begins. 
• 
Allocating responsibilities for the management, monitoring and reporting of the research. 

 
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• 
Ensuring that appropriate arrangements are in place to approve any modifications to the 
design, obtaining any regulatory authority required, implementing such modifications and 
making them known. 
• 
Satisfying itself that arrangements are kept in place for good practice in conducting the study 
and for monitoring and reporting, including prompt reporting of suspected unexpected serious 
adverse events or reactions. 
For full details of sponsor definitions and responsibilities please refer to the Department of Health’s 
Governance Framework for Health & Social Care (2nd Edition 2005). 
Sponsor: Greater Manchester Mental Health NHS Foundation Trust (GMMH) will assume overall 
responsibility for the project. GMMH sponsorship regulations are outlined in RD SOP14 Trust 
Sponsorship of Research (GMMH) https://www.gmmh.nhs.uk/search/text-content/ri-standard-
operating-procedures-sops-and-guidance-documents--1739  
Funder: National Institute for Health Research Health Services and Delivery Research Programme. 
The role and responsibilities of the funder are outlined in the contract between the Secretary of State 
for Health and Greater Manchester Mental Health NHS Foundation Trust Version number: 2/18 NHS 
Feb 18. 
 
ROLES AND RESPONSIBILITIES OF STUDY MANAGEMENT COMMITEES/GROUPS & 
INDIVIDUALS 
Study Steering Committee (SSC): The role of the SSC is to provide overall supervision for a project 
on behalf of the Project Sponsor and Project Funder and to ensure that the project is conducted to the 
rigorous standards set out in the Department of Health’s Research Governance Framework for Health 
and Social Care and the Guidelines for Good Clinical Practice.  
The main features of the SSC are as follows: 
• 
To provide advice, through its Chair, to the Project Funder, the Project Sponsor, the Principal 
Investigator, the Host Institution and the Contractor on all appropriate aspects of the project. 
• 
To concentrate on progress of the trial/project, adherence to the protocol, patient safety (where 
appropriate) and the consideration of new information of relevance to the research question. 
• 
The rights, safety and well-being of the participants are the most important considerations and 
should prevail over the interests of science and society. 
• 
To ensure appropriate ethical and other approvals are obtained in line with the project plan. 
• 
To agree proposals for substantial protocol amendments and provide advice to the sponsor 
and funder regarding approvals of such amendments. 
• 
To provide advice to the investigators on all aspects of the project. 
Project Management Group (PMG): The Project Management Group will consist of the co-Principal 
Investigators, the Project Manager, and PPIE representatives (a parent, and a young person). The group 
will hold monthly meetings throughout the study to review progress against the Project Management 
Plan. 
Patient and Public Involvement Groups: There will be two Patient and Public Involvement (PPI) 
groups during this study, a Young Persons Advisory Group (YPAG) and a Parents/carers and 
Professionals Advisory Group (PPAG). These groups will meet bimonthly and quarterly, respectively, 

 
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to review and feedback on the study and ensure young people and their parents/carers/families 
influence decision making. Training will be provided, where necessary, to support members of the 
advisory groups. 
PROTOCOL CONTRIBUTORS 
Professor Kathryn Abel, (KMA) is Professor of Psychological Medicine and Director of the Centre for 
Women’s Mental Health at the University of Manchester. She is Honorary Consultant Psychiatrist and 
Co-Director of the GM.Digital Research Unit at Greater Manchester Mental Health. GM.Digital has the 
specific scope of working to develop scalable and valued digital solutions to improvemental health and 
wellbeing. She has many years’ experience leading and successfully completing large scale mental 
health research trials. KMA will have overall responsibility for the project and oversee all work 
packages of the project.  
Dr Pauline Whelan (PW), is Co-Director of the GMMH GM.Digital Research Unit at Greater 
Manchester Mental Health NHS Foundation Trust which aims to develop and evaluate evidence-
based technologies to improve mental health and wellbeing. She is Senior Research Fellow in Digital 
Health at the University of Manchester.  She has 20+ years’ experience developing and deploying 
digital solutions across a range of research, healthcare and industry projects and is also an 
experienced PPI facilitator and mixed methods researcher. PW will have joint lead-applicant 
responsibilities, attend all PMG meetings, and advise on the potential for digital health technologies to 
support the range of potential solutions in WP1.  
Dr Julian Edbrooke-Childs (JEC), is Head of Digital Development and Evaluation at Anna Freud 
National Centre for Children and Families, Associate Professor of Evidence Based Child and 
Adolescent Mental Health at University College London, and Deputy Director of the Evidence based 
Practice Unit. His research covers three main areas: empowering young people, implementation 
science, and digital innovations. He has extensive experience of developing and evaluating digital 
mental health interventions for young people, publishing in leading journals in this field (e.g., the 
Journal of Medical Internet Research) and computer science conferences. JEC will attend all PMG 
meetings and advise on YP inequalities across the project.  
Dr Rachel Elvins, (RE), MD, FRCPsych is a Consultant Child and Adolescent Psychiatrist working in 
central Manchester. Clinically she has worked in a wide range of CAMH settings from community 
outreach to specialist inpatient facilities. Her research interests focus on eating and mood disorders in 
adolescents, treatment of autistic spectrum conditions, digital treatments in mental health and process 
measures in treatment trials, particularly the therapeutic alliance. Rachel co-leads the CAMHs 
research hub in MFT Trust which produces a range of high-quality research, and in collaboration with 
other research and clinical institutions. RE will attend all PMG meetings, provide clinical input into all 
work packages and coordinate local trial site in MFT.  
Dr Lesley-Anne Carter (LAC), is a Lecturer in Biostatistics at the University of Manchester, 
specialising in clinical trials methodology. She has a particular focus on the design and analysis of 
cluster trials and has expertise in multilevel modelling. In addition, she has experience with feasibility 
studies and is a member of the North West RfPB Regional Advisory Committee. LAC will attend all 
PMG meetings and lead on the analysis of the referral data.  
Professor Bernadka Dubicka (BD), is chair of child and adolescent psychiatry at the University of 
York, Honorary Professor at the University of Manchester and a consultant child and adolescent 

 
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psychiatrist at Greater Manchester Mental Health Trust. She has been a consultant for an 
adolescent unit for over a decade, and recently moved to a new post in Greater Manchester where 
she is helping develop intensive community and crisis services for young people and is also a 
research lead. In 2015 she was elected vice-chair of the RCPsych Child and Adolescent faculty, and 
became chair in June 2017. She campaigned actively for improved CAMHS on taking up this post. 
Dubicka will provide expertise from a CAMHS clinical and research perspective. 
John Sainsbury (JS), is the Innovation Manager, in Research and Innovation at Greater Manchester 
Mental Health NHS Foundation Trust. He has worked as an Allied Health Professional in Mental 
Health services, in CMHTs and as a clinical service manager in EITs. He holds an MSc in Continuous 
Improvement in the Public Sector and has acted as the Principal Investigator for digitally enabled 
therapies in CYP and Psychosis Services, and has enabled the Trust to be an early adopter of digital 
therapies for example: VR for agoraphobia and psychosis, and internet based therapeutic 
interventions for a range of mental health conditions.  
Charlotte Stockton-Powdrell (CSP), is an Information Systems Programme Manager and Co-Lead 
of the Digital Health Software  team who will be involved in the design and development of the digital 
CAMHS referral tool.  She has many years of experience in overseeing the development, delivery and 
implementation of digital health technologies, with a particular expertise in digital mental health. She 
was also heavily involved in EN-CAMHS 1. 
Professor Penny Bee (PB), is a Professor of Applied Mental Health Research, Deputy Theme Lead 
for Mental Health in the NIHR ARC-GM, Coproduction Lead in the NIHR rapid evaluation Unit, REVAL 
and NIHR Senior Investigator. She is a world-renowned qualitative researcher with an awarding 
winning track record in PPI (Young people and adults) and over £13 million active funding pertaining 
to patient experiences, support needs and barriers to care. She is Co-director of NIHR Global Health 
Research Group for mental health and has developed and evaluated mental heath digital applications 
for Young People in the UK Indonesia.  
Dr Lamiece Hassan (LH), is a Research Fellow, based at University of Manchester. She specialises 
in using participatory approaches from the social sciences, health informatics and computer science to 
explore user experiences, acceptability, preferences and ethical issues relevant to digital and data-
driven health interventions. She has experience in leading public involvement and engagement 
initiatives for large, health informatics research centres. LH will attend all PMG meetings and lead on 
all PPI activities.  
Heidi Tranter (HT) the Project Manager, is a Research Associate at Greater Manchester Mental 
Health NHS Trust (GMMH). She will be responsible to the day-to-day project management and 
oversight. She is an experienced research associate who has conducted research with healthy and 
vulnerable populations, and was extensively involved in EN-CAMHS 1. 
 
 
 
 
 

 
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Abbreviations 
  
CAMHS 
 
Child and Adolescent Mental Health Services 
CCIO  
 
Chief Clinical Information Officer 
CYP 
 
 
Children and Young People 
DHSC   
 
Department of Health and Social Care 
EDI 
 
 
Equality, Diversity and Inclusion 
ICB 
 
 
Integrated Care Board 
ICS 
 
 
Integrated Care System 
IM&T  
 
Information Management and Technology 
NASSS  
 
Non-adoption, Abandonment, Scale-up, Spread, Sustainability 
NASSS-CAT 
Non-adoption, Abandonment, Scale-up, Spread, Sustainability Complexity 
Assessment Tool 
NHS   
 
National Health Service 
NHSE   
 
National Health Service England 
PMG  
 
Project Management Group 
PPAG  
 
Parent’s and Professional’s Advisory Group 
PPI 
 
 
Patient and Public Involvement 
SSC 
 
 
Study Steering Committee 
WP 
 
 
Work Package 
YPAG  
 
Young People’s Advisory Group 
 
 
 
 
KEY WORDS: 
 
 
CAMHS, mental health, digital mental health, referral, 
stakeholder consultation 
 
 

 
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EN-CAMHS 2: Enhancing CAMHS Referrals 
 
1 
BACKGROUND 
Children and young people’s mental health is a national priority for the Department of Health and 
Social Care [1] and all major national funders. This research addresses critical problems in the referral 
processes to Child and Adolescent Mental Health Services (CAMHS) that we identified during our 
qualitative research program during our NIHR HS&DR-funded EN-CAMHS 1 project. 
 
1. CAMHS cannot cope with the growing numbers of referrals. Nearly 500,000 children and 
young people (CYP) were referred to CAMHS in 2021/2022 [2], and this number has risen steadily 
since 1999 [3,4]. CAMHS providers are overwhelmed by the number of referrals [5,6]. 
 
2. Rising demand is coupled with high levels of rejection. Almost a quarter of the referrals made 
into CAMHS are unsuccessful because they are deemed inappropriate or do not reach the 
threshold for treatment [2]. This results in longer delays for children who need the specialist 
care, which is exacerbating mental health difficulties [7]. 
 
3. The experience of the referral process is poor [8,9]. The high rate of inappropriate referrals 
causes unnecessary distress to children, their families and to referrers, who can wait many 
weeks if not months for a decision [10]. The family upset is compounded by a lack of 
communication throughout the long process [11]. When a referral is rejected, it typically goes 
to the ‘back of the queue’, resulting in further delays for children and families. 
 
4. The quality of CAMHS referrals is poor and is often the first and only, service referred to by 
families (who see this as the gold standard) and referrers struggling to know what else is 
available in primary care [7,10]. This leads to an increased number of referrals, which are often 
not completed to the standard needed by CAMHS. 
 
5. Clear information about what CAMHS can and cannot provide is not readily available and 
suitable alternative sources of mental health support are often not explained to children and 
their families at the point of referral rejection [12,13].  
 
6. Non-CAMHS support is poorly understood [14] and not widely valued as a helpful source of 
support. People who could be helped better by non-CAMHS support are not signposted 
elsewhere early enough in the process, except in a minority of places. 
  
7. Rejected referrals incur a significant cost for CAMHS who must triage often incomplete and/or 
inaccurate, referral documentation. Receiving a rejection is also frustrating and costly to 
referrers (GPs, school staff) who spend valuable time preparing referral documentation [15,16]. 
 
Our NIHR funded EN-CAMHS project (“EN-CAMHS 1”, NIHR131379) consulted with 110 CAMHS 
stakeholders (CYP, parents/carers, GPs, mental health school staff and CAMHS professionals) [17]. 
EN-CAMHS 1 confirmed and extended previous research: stakeholders reported widespread confusion 
about the kinds of support CAMHS can and cannot provide. Referrers reported poor support during the 

 
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referral process, lack of transparency about the process and a lack of knowledge and low confidence in 
other sources of support. Services reported poor quality of referrals such that many were ‘rejected’. 
Families described using ‘workarounds’ to get to CAMHS (e.g. going to A&E). This is concerning not 
least because it highlights families’ difficulties, but also because it disrupts the goals of referral and 
triage: i.e. to provide timely, appropriate care and to prioritise those in most need. We identified 
overwhelming problems with the current referral processes resulting in high levels of unnecessary 
additional cost to services; and widespread despair for referrers and for children and families. 
 
2 
RATIONALE  
Direct changes to CAMHS resourcing and staffing are the domain of DHSC and not something we can 
change. However, by improving referrals, our work can relieve additional pressure on services, make 
the process work better and create greater satisfaction for users. We can also increase understanding 
of what CAMHS is and does; and create confidence in CAMHS alternatives. Our research has 
demonstrated an urgent health and care need to provide a straightforward referral process to ensure 
that children most in need are prioritised for treatment, and that all children are signposted to 
appropriate help in a timely manner. Such a process needs to be scalable, low cost, widely accessible 
and sustainable over time.  
Our 110 CAMHS stakeholders in EN-CAMHS 1 [18] repeatedly expressed a clear preference for a 
digital solution that could simplify and improve the CAMHS referral process. Stakeholders 
unanimously advised that we should create a national, standardised referral process which could also 
be tailored to local CAMHS’ configurations. To date, there has been no national collaboration to 
improve the referral process; rather, piecemeal attempts across CAMHS providers have adopted 
different approaches. Our audit of such approaches unfortunately suggests they do not meet the 
requirements of CAMHS stakeholders identified in EN-CAMHS 1. For example, none has been 
rigorously co-developed with stakeholders; none provides a mechanism for people to track ‘where 
they are’ in the referral journey once a referral is submitted. From a technical perspective, the digital 
tools currently developed are not  interoperable with core NHS infrastructure (e.g. NHS app; NHS 
website). There is patchy sharing of digital referrals in geographically-aligned providers, but it is 
fragmented and again lacks most of the recommendations we bring from EN-CAMHS 1 stakeholders 
for what the digital referral should ‘look like’.  
EN-CAMHS 1 stakeholders recommended we implement a digital solution to address the current 
problems of poor communication, missing information, poor data quality and lack of guidance for 
families about what to expect of the referral journey. The design and development of the digital tool 
will specifically address the accessibility needs of referrers. We intend to explore issues of digital 
accessibility in the consultations (WP1) and in the co-design workshops with participants. We shall 
also consider the three key elements of digital exclusion: lack of digital access; lack of digital skills; 
lack of confidence to use digital. We will explore these challenges in the co-design workshops, with 
stakeholders in consultation and with our advisory groups. The digital tool will supplement rather than 
supplant traditional modes of referral; traditional (e.g. paper based) modes of referral will remain. 
However, we anticipate that our digital tool will enable more people to make more successful referrals 
than before. 

 
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We shall also generate new knowledge about the patterns of referrals into CAMHS, by automating 
data collection through the digital tools and thereby enabling services and NHS England to understand 
referral and treatment data in greater detail than ever before. We see enormous potential in this 
project and its learnings/outputs for cross-pollination to other services experiencing similar 
problems. 
1. Referrals overwhelming CAMHS 
● We cannot increase CAMHS staff levels or change what it can provide.  
● We can make the referral process work better and with greater satisfaction for referrers and for 
those being referred. 
● We can increase confidence in CAMHS alternatives and increase follow-through into CAMHS 
alternatives. 
● We can help CAMHS prioritise the needs of those it is designed to help. 
 
2. Quality of referrals is poor  
● We can provide clear, accessible guidelines to make appropriate referrals. 
● We can validate input on the referral form and ensure all required information is completed pre-
submission. 
● We can raise awareness about what a good referral is.  
● We can educate people about common referral mistakes. 
 
3. Poor experience of referral 
● We can explain the referral process clearly. 
● We can outline key steps in the referral journey and inform people about the expected waiting 
times for the local CAMHS triage process. 
● We can update referrers and CYP/families as their referral moves through the system. 
● We can signpost to local and national resources that may help during the waiting period. 
 
4. Costs for CAMHS  
● We can reduce CAMHS clinical time wasted by automating the checking of referral documents 
before they are submitted. 
● We can improve referral success by ensuring alternative non-CAMHS support is signposted 
appropriately and explained. 
 
5. Poor information 
● We can provide straightforward accessible information translated into multiple languages. 
● We can signpost to phoneline support for those who are not comfortable with technology. 
 
6. Lack of confidence in non-CAMHS 
● We can make non-CAMHS support more understandable and transparent to people using 
services by linking to real-life case studies / CYP stories and working with CAMHS stakeholders. 
● We can help build trust between referrers and services. 
 
7. Timeliness of Assessment by CAMHS 
● 
We can divert CYP to alternative services which may free CAMHS to see those who need them 
most, sooner. 
● 
We can reduce the workload of CAMHS staff in triaging inappropriate referrals.  
● 
We can free up CAMHS clinical time for more complex appropriate referrals. 

 
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● 
We can make referrals faster and more reliable. 
● 
We can make them ‘recyclable’ so re-referrals do not ‘fall out’ of the system and need to ‘start 
from scratch’/’go back to the back of the queue.’ 
 
Evidence  
The number of children and young people (CYP) waiting longer than 12-weeks for mental health 
treatment in England is at a five-year high [19]. The challenge for CAMHS improvement is complex, 
but a review of the current literature has identified how the referral process represents an important 
aspect of this leading to children waiting until they are very unwell to access care [10,19]; possibly 
needing more prolonged and intensive treatment as a result and leading to lack of trust in services 
[20,21]. Simple, practical problems already identified in the literature include lack of transparency in 
the referral process; incomplete information in referral forms; poor communication with 
referrers/families throughout the process; lack of information about where else to seek help and who 
can refer into CAMHS [e.g. 22-25]. The NIHR HS&DR-funded EN-CAMHS 1 extended this 
understanding of the challenges for referrals into CAMHS.  
 
Existing evidence suggests potential solutions include: a ‘single point of access’ (SPoA) within 
CAMHS [e.g. 26-28] referrer-friendly guidelines with training to support referrers [14]; increasing, and 
ring-fencing funding available to CAMHS [6]; clarity about CYP mental health support available for 
referrers that is separate from CAMHS and which may be more readily and repeatedly available in the 
community [9,27]; and a call for policymakers to improve collaboration between professionals involved 
in supporting CYP mental health [11]. However, our audit of CAMHS referral processes found that 
only 11 providers (out of 78) have online, interactive referral forms, many of which have poor user 
interfaces and are difficult to navigate. Most have no online referral mechanism and provide lengthy 
documents that need to be downloaded, printed and/or emailed individually to each different provider. 
Referrers told us these forms were often hard to find, confusing and difficult to complete. Easy-win 
opportunities to provide online referral forms that automatically validate information and support 
accessibility (e.g. translations) have not been exploited. Other helpful information, such as: overviews 
of what CAMHS can and cannot provide, indicative waiting times, signposting to alternative local 
sources of help and other support mechanisms are not available in a standardised format. Children 
and families told us they did not know where to find information about CAMHS and that they did 
not know which sources of information to trust.  Opportunities for co-designed, patient-centred 
communications accessible to this (and other) marginalised and under-represented groups have been 
missed. 
 
EN-CAMHS 1 engaged widely with children and families, policymakers, commissioners, mental health 
staff, NHS England and other CAMHS stakeholders to identify the key problems and the tractable 
solutions to the CAMHS referral problems. Stakeholders advocated for a digitally-led referral process 
that would support completeness of submitted information; signpost to alternative help and resources 
(where applicable); real-time updates about where a child is on the referral pathway and approximate 
waiting times to referral outcomes and treatment. Mental health staff identified time-savings that would 
accrue from receiving correct and accurate information at the point of referral review. GPs and school 
staff advised that the system needs to guide them through the referral process and advise on 

 
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alternative sources of help; the current processes are simply not fit for purpose and often cause 
distress to children and families. 
 
Another key benefit of a standardised referral system is the ability to automatically collect data for 
onward reporting to national bodies (e.g. waiting times to NHS England). This automatic data 
collection would further enable benchmarking of CAMHS referral processes widely across and 
within Trusts in the UK. This monitoring of service performance in turn can provide a means for 
responding to problems quickly, as well as targeting support to areas where there are clear 
challenges.  
 
3 
RESEARCH QUESTION/AIM(S) 
Our overarching aim is to improve the CAMHS referral process for CYP, their families and carers, as 
well as for health, education and CAMHS professionals so that CYP receive the help they need as 
quickly as possible.  
Research questions:  
1. Using the findings from EN-CAMHS 1 and stakeholder consultation, can we develop a set of 
national standards for digital CAMHS referral processes? 
 
2. Can we translate the prioritised features from EN-CAMHS 1 of a digitally-led, intelligent 
CAMHS referral process into a usable, acceptable and widely accessible platform that is 
nationally standardised, locally adaptable and sustainable? 
 
3. Can we address concerns about digital exclusion and other identified health inequalities 
through the newly developed CAMHS referral mechanisms? 
 
4. How do referrers, including GPs, school staff and children/young people/families perceive the 
usability and acceptability of the digital tool? 
 
5. How do referrers use and engage with the tool? 
 
6. How do rates of successful referrals with the tool compare to traditional modes of referral? 
 
There are no primary nor secondary outcome measures for this study as this is a feasibility study to 
evaluate usage and acceptability of the co-created tool using data collected from referrers. These data 
will be a combination of quantitative data on usage and engagement and qualitative data from semi-
structured interviews with 25 referrers. 
 
 
3.1 
Objectives 
 
1. To develop national standards for digital referrals into CAMHS that have sufficient flexibility to 
support the diversity of CAMHS configurations locally and regionally (WP1). 
2. To co-develop with key stakeholders a standards-compliant digital CAMHS referral tool that 
maximises the use of digital technologies to support inclusion (e.g. translation support, text to 
speech, culturally-relevant service information and imagery) (WP2). 

 
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3. To implement, test and refine the newly developed standards and digital tool in 5-8 CAMHS 
providers (WP3), with CAMH sites purposively selected for diverse contextual characteristics. 
4. To develop a blueprint for implementation of the new referral process at CAMHS. 
5. To develop a robust sustainability plan for standards-compliant CAMHS referral processes so that 
the platforms developed through the funding remain relevant, usable and useful beyond the 
lifetime of this grant funding (WP4). 
 
3.2 
Outcome 
To our knowledge, this is the first study designed specifically to develop a solution to the challenge of 
rejected/inappropriate CAMHS referrals. Through our extensive consultation with all key stakeholders 
on the referral process throughout EN-CAMHS 1, we are now positioned to build a solution to the 
problems of referral that addresses the needs of all types of referrers, including notably young people 
and their families. Our broad network of collaborators and partners on the project will support 
widespread dissemination of the work. Our partner MQ will work closely with us throughout the project 
to ensure that our dissemination, outputs and impact are maximised for the benefit of young people 
who require mental health support. As in EN-CAMHS 1, we shall leverage our extensive mental health 
networks to influence and support policy change to bring benefit to CYP and their families through an 
enhanced referral process. We will aim to share findings as soon as possible and tailor these to the 
audience. We shall do this through ongoing updates through our social media channels and those of 
our partners (critically, MQ) and through ongoing presentations, conferences, seminars and informal 
events across the full lifetime of the project. MQ is our dissemination partner and we shall hold events 
with stakeholders throughout the project as part of our parallel work on implementation. 
The project has the potential for far-reaching and sustained impact. Specifically, we anticipate and will 
aim for the following effects: 
● Reduced proportion of inappropriate referrals to CAMHS. 
● Greater proportion of successful referrals.  
● Reduced clinical costs for use by CAMHS assessing CYP and families in need. 
● Reduced waiting times for first appointments.  
● Flattening of recent increases in referral rates. 
● Improved quality of referrals and information therein. 
● Reduction in length of initial referral meetings. 
● Fewer delays in decision-making.  
● Improved information about alternative services or self-help. 
● With swifter processes, it will help reduce the number of young people who get to assessment 
stages and then get rejected for becoming eligible for adult services [9]. 
● Improved patient experience through transparency of progress during referral.  
● Potentially more time made available for face to face appointments when needed due to more 
efficient and complete referral process. 
● In services where dedicated time to discuss referrals are not routine, greater availability can be 
carved out for direct contact (phone, email) to prevent inappropriate and rejected referrals, and to 
ensure those CYP who need be seen do so. This remains an essential clinical activity to ensure 
patient safety. It would reduce the need for lengthy, and weekly referral meetings freeing up 
resource internally. 

 
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● Having the necessary sources of information and complete investigations prior to the initial 
assessment will improve throughput and waiting times within the CAMHS system leading to 
increased patient and clinician satisfaction and earlier interventions/diagnosis as appropriate 
Clinicians would be freed up from chasing further information to supplement their assessment and 
formulation and this will improve efficiency and release their time for clinical duties. 
● We shall facilitate NHS England’s ability to benchmark and monitor referrals into CAMHS and the 
information from the digital referrals process will also aid ICBs to commission services best suited 
to support local need. 
● We shall influence policy and practice through direct contact with NHS partners and governments 
and by feeding information about referral over time and different regions.  Many of our project team 
and collaborators are influencers at national and regional policy level (e.g. Abel; Chitsabesan; 
Ranote; Jiva).  We shall also input directly to professional groups (e.g. Faculty of Child and 
Adolescent Psychiatry). 
 
4 
STUDY DESIGN and METHODS of DATA COLLECTION AND DATA ANALYSIS 
The study uses a mixed method design, including: :  
• 
Extensive stakeholder consultation relating to design information for the digital tool through 
focus groups, workshops and semi-structured interviews (Qualitative).Analysis of how people 
use and engage with the newly developed CAMHS referral tool (Quantitative – engagement 
and usage metrics; qualitative – semi-structured interviews. 
• 
Analysis of successful referral rates compared to traditional modes of referrals. 
• 
Designing, developing and testing a digital referral tool using Agile approaches. 
 
4.1 
Data Collection 
Work Package 1 (WP1), Months 3-12 (Leads: MQ, PW, PB) - Requirements Prioritisation 
Aims: 
● We shall hold 2 x roundtable events (Manchester and London) to gather feedback and input 
from senior stakeholders (e.g. NHS England senior leaders; commissioners, CAMHS leaders). 
● With our partner MQ, we shall conduct 6 stakeholder focus groups with CYP, families/carers 
and professionals including GPs, to collaboratively prioritise requirements (identified in EN-
CAMHS 1) for the revised digital tool. We aim to recruit up to 10 stakeholders per group, 
therefore 60 participants in total. We shall use the MoSCoW prioritisation method [29] 
collaboratively as we have done in a number of other NIHR funded digital health projects. As 
part of this prioritisation process, each of the existing 11 interactive CAMHS referral forms 
created by individual CAMHS in England will be rated using the System Usability Scale [30] 
and using criteria from the EN-CAMHS 1 focus groups (e.g. navigability, clarity of language, 
accessibility).  
The technical project team will use the information from the roundtable and stakeholder meetings 
about the broader technical mental health landscape alongside their expert digital health software 
knowledge to develop a set of technical standards relevant for the CAMHS referral process. The 
costed software engineer will align with and extend existing NHS referral standards and 
interoperability standards to achieve this aim. 

 
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Work Package 2 (WP2) (PW, RE, JEC, Digital Health Software Team, VB): Months 3-12 - Co-
Design and Tool Implementation 
Aims: 
● Onboard 5-8 CAMHS providers (with different characteristics and served populations) who are 
willing and can support an evaluation of the digitally-enhanced CAMHS tool in collaboration with 
our partners, NHS England. 
● Workshops with 5-8 Trust staff from each provider. 
● Co-design the tool with CAMHS stakeholders (2 x 1-hour workshops with 25 referrers). 
● Ensure accessibility support (WCAG2.2 and assistive technology, translations of the tools etc) is 
extensive and supports needs identified by stakeholder consultation (Digital Accessibility Working 
Group n=10) and in collaboration with PPIE, YPAG and PPAG. This group will be formed from the 
project with characteristics derived from accessibility needs identified in the stakeholder codesign 
groups and from ENCAMHS 1. This group shall meet twice during the co-design process to review 
the tool and suggest accessibility enhancements. Every effort will be made to incorporate 
suggestions made by this group into the digital tool. 
 
National and locally relevant content (e.g. links to alternative sources of help) will be developed in 
collaboration with CAMHS professionals at each of the providers and in collaboration with the CAMHS 
professionals on our research team. We shall run a workshop at each of the chosen providers with 5-8 
Trust staff members from different departments, for example, clinical IT, digital strategy, CCIOs, 
research. These workshops will undertake a full assessment of the capability of the Trust to 
implement, identify risks to implementation, and create a plan to manage and mitigate them. We have 
costed a professional content designer to ensure the quality and accessibility of content developed. 
We have provisional confirmation from the following CAMHS providers for WP2 and WP3: Manchester 
University NHS Foundation Trust (South Manchester, North Manchester); Greater Manchester Mental 
Health NHS Foundation Trust (Bolton, Wigan); East London NHS Foundation Trust (South 
Bedfordshire and Luton). 
Our team has worked across many NIHR funded digital mental health projects. We shall use the same 
approach in this project, developing with an iterative Agile and a user-centred design approach to co-
develop the platform. This approach enables the software team to work closely with and respond to 
the needs of the end user. This will be delivered through (a) user research (b) moderated usability 
testing with end users. This design approach will follow the below stages: 
• 
Discovery [38]: The discovery phase will draw heavily on the findings of EN-CAMHS 1 and of 
Work Package 1 of this project. We shall translate these findings into outputs that can be 
disseminated widely including User Personas (to indicate the profiles of different referrers who 
will use the system) and User Journey Maps (to show how people will interact with the system 
at each stage of the process). 
• 
Alpha [39]: Our senior designer will produce prototypes and wireframes to demonstrate the 
flow of the digital tool in this phase for feedback and review by workshop participants.  
• 
Beta [40]: During this phase, we shall ask at least 5 healthy volunteers to try out the newly-
developed tool to ensure it has no critical or major defects and is ready for use in the 
evaluation in WP3. 
• 
Live [41]: The live version of the platform will be demonstrated in a co-design workshop 
available for participants to try and provide feedback.  

 
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A priority for the digital tool is to be inclusive and accessible to all. We will work collaboratively with our 
stakeholder groups during the co-design phase to ensure we maximise the accessibility of the tool. 
From EN-CAMHS 1 we already know that supporting access to translated materials is an important 
requirement. We aim to go well above and beyond the WCAG 2.2 standards [31] to ensure that the 
tool we develop has as wide a reach as possible. We shall also beta-test the accessibility with a Digital 
Accessibility Working Group. 
Work Package 3 (WP3): (KMA, PW, VB, LAC, PB, RE, PB) Months 12-24 - Evaluation of 
Implementation 
We aim to: 
● Evaluate implementation of the new digitally-enhanced referral process with 60 key referrers. 
● Explore the potential, enablers and barriers of embedding a new CAMHS referral mechanism via 
semi-structured qualitative interviews with 25 referrers. 
● Develop a blueprint and toolkit for CAMHS to implement the referral tool. 
● Understand if and how the tool enhances the CAMHS referral process. 
 
A mixed-methods, non-randomised evaluation of implementation with 60 CAMHS referrers across 5-8 
CAMHS. CAMHS sites and referrers will be chosen to reflect the diversity of the current CAMHS 
landscape. 9 CAMHS sites have indicated their support for working with us  on the evaluation. We 
shall evaluate usage and acceptability data collected from referrers which combine quantitative data 
on engagement and usage with qualitative data from semi-structured interviews with 25 referrers. 
We shall use the NASSS-CAT toolkit [32] to guide the implementation and evaluation of the digital tool 
across CAMHS sites. This entails running a NASSS-CAT workshop with key stakeholders from each 
CAMHS service in order to introduce and complete the assessment as well as create a risk 
management and mitigation plan. The workshop will identify gaps in information that will need to be 
identified and incorporated. Once this is done, the risk plan will be regularly reviewed throughout the 
implementation process. Insights from this will be turned into an implementation toolkit that sets out a 
standardised evidence-based approach along with common risks and how they can be managed or 
mitigated. We shall also use the NASSS-CAT implementation toolkit to explore the potential, enablers 
and barriers of embedding a new CAMHS referral mechanism across different types of referrers and 
across CAMHS with various configurations. The NASSS-CAT toolkit will be used to guide 
implementation discussions with key stakeholders. Specifically, we will use the NASSS framework to 
address key considerations for the implementation digital transformation covering the key NASSS 
areas: the illness/condition in question; the technology; the value proposition; the intended adopters; 
the organisation; external context for innovation. The questions from the NASSS-CAT toolkit on these 
areas will be tailored for the EN-CAMHS project and used to structure the topic guides for interviewers 
with referrers.       
We shall collect referral data from each referrer and from the CAMHS site referred into. We shall 
collect number of referrals made via the digital tools and numbers made by traditional referral 
mechanisms. We shall collect usage and engagement data with the tool, including numbers of 
referrals completed to an endpoint (either referral sent to CAMHS or to alternative help). We shall 
collect data on accepted/rejected referrals made by participant referrers to CAMHS using a) the tool 
and b) traditional modes of referral. Co-design workshops with each CAMHS provider will help us 
understand which data can be captured, and how each provider records the data. 

 
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We shall conduct semi-structured qualitative interviews with 25 referrers (including CYP and their 
families/carers as well as professional referrers) to understand the usability and acceptability of the 
new referral process. Interview schedules will be developed in collaboration with our YPAG and PPAG 
to explore experiences of using the new referral process: usability, content quality, barriers/enablers 
and any future refinements. The interview schedules will be informed by two recognised theoretical 
frameworks to assess intervention development, implementation and sustainability (NASSS, NPT [33]) 
and will focus on how the intervention becomes/does not become incorporated and sustained in 
practice. We shall use the mechanisms defined by NPT (coherence, cognitive participation, collective 
action and reflexive action) to structure the topic guides for interviewers with referrers. This will enable 
us to explore and analyse the implementation of the digital tool collaboratively. Interviews will be 
conducted by a Research Associate trained and experienced in qualitative methods. Consenting 
participants will be interviewed for up to one hour at a convenient location and transcribed verbatim. 
Work Package 4, (WP4): (MQ, KMA, PW) Months 6-30 - Sustainability Planning  
The charity MQ Mental Health Research was a key partner to EN-CAMHS 1. We plan to continue this 
successful partnership in EN-CAMHS 2. In this WP4, MQ will drive the sustainability of the EN-
CAMHS tools. MQ are actively engaged in discussions with the Prudence Trust about longer-term 
sustainability support for the platform. MQ aim to collaborate to drive and support the tools’ 
implementation, nationally if possible. This will require lobbying key national stakeholders (including 
senior policymakers, regional ICB leads, mental health professional bodies) to support implementation 
of the platform for the medium and longer terms, beyond the lifetime of this grant. MQ have secured 
funding from the Prudence Trust to support longer term sustainability for the referral tool and 
enhanced referral processes developed through this project. MQ will work to secure alternative longer 
term sustainability solutions through a piece of work called ‘FORESIGHT’ which will be delivered in 
three overlapping phases, complementing deliverables within ENCAMHS 2. 
 
PPIE 
PPIE is deeply embedded across all elements of the project. EN-CAMHS 1 achieved a national award 
for the breadth and depth of PPIE activities. We shall expand this achievement in EN-CAMHS 2. Our 
YPAG and PPAG alongside widespread consultation with CAMHS stakeholders will ensure we 
engage extensively with diverse CAMHS stakeholders, including CYP, parents and families. Our 
recruitment to PPIE activities will aim for contributors from across key demographics aiming to include 
groups typically under-represented especially those parents with mental illness as well as parents and 
families living in deprivation and some Black and migrant ethnic minority groups. The YPAG and 
PPAG will be consulted bi-monthly throughout the project and advise across all work packages. We 
will leverage the extensive networks of underserved local communities and networks of the Greater 
Manchester Applied Research Collaboration as well as the Young People’s Panel and the GM Forum 
(CoI Bee is a lead of the mental health theme of the GM ARC). CYP, parents/carers and professionals 
involved in the YPAG, PPAG and PMG will have substantial involvement across the project. PPIE 
contributors will be reimbursed for their time and expenses and will have access to UoM training for 
public contributors (and/or we will support with our own induction . There will be at least 2 members (1 
from YPAG, 1 from PPAG) invited to attend the PMG monthly meeting. A PPI impact log will be used 
throughout to support team-wide discussion and reflection on levels of engagement/involvement, thus 
ensuring the level of contribution is appropriate.  

 
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See below breakdown of involvement at every stage of the project, as illustrated in the flow diagram: 
Set up phase: YPAG and PPAG formed; contributing to focus group topic generation; regular input at 
PMGs, YPAG and PPAG meetings.  
WP1: YP, parent & stakeholder input to prioritise ‘wants’; input to focus groups; regular input at PMGs 
and PPAG, YPAG meetings.  
WP2: CAMHS referrers (including children and young people, parents & families) co - design tool; 
regular input at PMGs & PPAG, YPAG meetings.  
WP3: YP, parent and stakeholder input to emerging data analysis; regular input at PMGs and PPAG, 
YPAG meetings.  
WP4: regular input at PMGs & PPAG, YPAG meetings.  
Analysis and write up phase: YPAG & PPAG will be consulted in the analysis process, interpretation 
and dissemination of findings; regular input at PMGs, YPAG and PPAG meetings. 
 
 
4.2 
Data Analysis 
In WP1, data from the roundtables shall not be formally analysed but insights gained will be developed 
into a report and used throughout the project, and specifically to inform the background context for the 
prioritisation and standards development of the digital referral tool. Where a consensus on priorities 
cannot be reached within or across workshops, the research team, in close collaboration with the 
advisory groups, will make the final decisions using a Consensus Voting approach. 
In WP2, we shall design a standards-compliant technical architecture for the system, emphasising the 
need for interoperability with NHS systems. This will include consideration of how the tool complies 
with NHS referral standards (e.g. BaRS standard [34]) and with the NHS app [35]. We shall also 
undertake an assessment of each CAMHS service’s capacity and capability to implement the referral 
tool using the empirical NASSS framework [36]. We will employ a light touch version of the framework 
to assess CAMHS site’s suitability to participate in the programme. We will then run a workshop with 
each of the chosen sites to undertake a full assessment of their capability to implement, identify risks 
to implementation, create a plan to manage and mitigate them.  
Our user-centred co-design approach will follow the UK’s Government Digital Standards approach 
across the four stages of User Research: Discovery, Alpha, Beta, Live [37]. Each of the first two 
phases, described above, will involve a 1-hour co-design workshop with key stakeholders (n=25 key 
referrers, including GP, school and health professionals, CYP, families and carers). Our aim to include 
a diversity of referrers (including diversity of: referrer type; demographics; urban/rural; CAMHS 
configuration – where applicable; personal characteristics of CYP referred – key diversity elements are 
drawn from our work in EN-CAMHS 1.) 
WP3 Quantitative data analysis: We shall evaluate how referrers engage with the referral tool 
analysing engagement / usage analytics from the digital tool following the AMUsED framework [42]. 
Specifically, we will summarise usage over time to evaluate whether it is an acceptable referral 

 
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method and we will explore whether this differs between type of referrer.  We shall explore ‘effective 
engagement’ with the tool: the ability of referrers to complete a successful referral with the tool. A 
successful referral can mean either a referral to CAMHS or to an alternative source of support for the 
CYP. We shall analyse the rate of successful referrals made using the tools against those made using 
traditional referral processes. 
Qualitative data analysis: We will conduct qualitative interviews (n=25) with referrers who have used 
the digital tool to highlight any potential barriers to implementation. Additionally, WP3 Qualitative data 
analysis: Anonymised transcripts will be analysed using NATCEN Framework Analysis methodology 
set out by Ritchie and Spencer [43], outlined in Ritchie et al. [44], and using Nvivo 12, as this has a 
Framework Matrices Tool [45], allowing for both inductive and deductive coding. Coders will meet 
regularly to discuss codes and develop a provisional framework. During constant comparison of new 
data, this provisional framework will be amended to accommodate new codes and remove old codes 
that become superfluous. The final coding framework will be presented to the study advisory group to 
ensure interpretations of data remain grounded in the experience of mental health services. Analysis 
will occur in parallel to data collection. The whole team will agree when data saturation has occurred.  
 
5 
STUDY SETTING 
This is a multi-site study. The referral data collection will involve 5-8 CAMHS sites from various regional 
providers. The collaborating sites will be selected to: target the areas of high need for CYP mental 
health; reflect diversity in terms of urban/rural locations; ethnicity of service user population; diversity in 
configuration of CAMHS services/CAMHS offer.  
The stakeholder and Trust staff consultations, i.e. roundtables, focus groups, workshops and semi-
structured interviews, will be held both virtually and face-to-face. Virtual consultations will be facilitated 
via Microsoft Teams. If any sessions are held in person, these will be held at different locations to ensure 
they are as accessible as possible, for example, central locations in both the South and North of 
England.  
Quantitative data reflecting usage and engagement will be collected using inbuilt analytics. 
 
6 
SAMPLE AND RECRUITMENT 
6.1  
Eligibility Criteria 
6.1.1 Inclusion criteria  
Throughout the project, participants will be included if they are: 
• 
Aged 16+. 
• 
CAMHS Stakeholders who have experience with the CAMHS referral process since 2019, 
these may include: 
o CAMHS Staff: we will include any staff who currently work in CAMHS services. 
o Collaborators: We will include collaborators who have direct experience of the current 
referral process for CAMHS. 
o CYP: We will be recruiting CYP who have been referred to CAMHS regardless of 
whether they were accepted into the service or not.  

 
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o Key referrers: We would ask that these individuals have had experience referring CYP 
to CAMHS, regardless of how many times. 
o Parents/carers: we will ask parents/carers who have experience of their child or a child 
in their care having been referred to CAMHS, regardless of the outcome of the referral. 
o CAMHS Commissioners: We will ask Commissioners who understand the current 
CAMHS referral processes locally or nationally, and who are involved in the funding 
process. 
o Mental Health Leads: We will invite people with a strategic overview of the CAMHS 
referral process locally or nationally to share their experiences of the referral process.  
o Any individuals identified through earlier WPs as key to the CAMHS referral process. 
• 
Able to provide informed consent. 
• 
Be proficient in English. 
 
6.1.2 Exclusion criteria  
• 
Participants must be able to speak English at a basic level. 
• 
Participants must have good internet access to take part in the online consultations. 
• 
Participants have not had experience with the CAMHS referral process.  
We will inform participants during the consent process (i.e. in the PIS and subsequent discussions) 
that there may be discussion which they could find upsetting, and we have a distress protocol in place 
for if anyone needs additional support, but that this should be considered when agreeing to take part 
in the study.  
 
 
6.2  
Sampling 
6.2.1  Size of sample 
In WP1, we shall recruit 60 key CAMHS stakeholders (CYP, parents and carers, key referrers and 
CAMHS professionals) to 6 focus groups (10 participants per group). 
In WP2, we shall recruit 5-8 CAMHS providers, with 5-8 members of Trust staff from each provider to 
participate in a workshop (25-64 staff in total). 2 1-hour co-design workshops will also be held with 25 
key referrers in each group. A maximum of 10 stakeholders shall be recruited to form the Digital 
Accessibility Working Group (n=10 CYP/families and professional referrers); a group formed from the 
project with characteristics derived from accessibility needs identified in the stakeholder co-design 
groups and from EN-CAMHS 1. This group shall meet twice during the co-design process to review 
the tool and suggest accessibility enhancements. Every effort will be made to incorporate suggestions 
made by this group into the digital tool, within the time and resource limitations of the project 
In WP3, we shall recruit 60 key referrers across all sites for quantitative data collection. 25 of the key 
referrals will also participate in qualitative semi-structured interviews. 
The sample size across the project will be made up of: 

 
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• 
WP1 - 6 focus groups - we aim to recruit 60 stakeholders (6-10 per group). 
• 
WP2 - onboard 5-8 CAMHS providers, 1-hour co-design workshop with each provider (n=25), 
Accessibility working group n=10. 2 co-design workshops with up to 25 participants in each 
(n=50). 
• 
WP3 - 60 referrers to use the tool, semi-structured interviews with 25 referrers. 
6.2.2  Sampling technique 
In WP1 and WP2, we shall use purposive sampling to recruit a diverse group of CAMHS stakeholders 
and Trust staff for focus groups. 
In WP3, we shall use purposive sampling to include a diversity of referrers. We shall aim for diversity 
in terms of: type of referrer (GP, school, self-referrer, social care); CAMHS configuration (provision of 
service; location of CAMHS urban/rural) and by key individual characteristics of the referrer (age, 
ethnicity, spoken language etc). We shall aim to make the sample of referrers representative of the 
proportions of the different referers that refer into CAMHS. That would mean more GPs than other 
referrers. The diversity of CAMHS configuration will be drawn from the data from EN-CAMHS 1 and 
with respect to relevant recent changes to the CAMHS landscape identified in WP1. 
6.3 
 Recruitment  
6.3.1     Sample identification 
In WP1, we shall hold a combination of stakeholder specific and mixed stakeholder groups. Attendees 
can choose which type of group they feel most comfortable attending. Across the 6 focus groups we 
aim to recruit 60 participants representing a diversity of referrer type (CYP, GP, health, social care, 
educational professional, CAMHS workers, families), and also designed to incorporate the diversity 
within each referrer type found in EN-CAMHS 1. Identification and recruitment of stakeholders will be 
extensively supported by our partner MQ. 
In WP3, we shall recruit referrers from across the study CAMHS sites. Senior stakeholder 
collaborators will be consulted to ensure the project achieves the most appropriate mix of CAMHS 
providers to optimise widespread applicability of the new tool. We shall work with 60 referrers to test 
the new referral process. We shall specifically aim to ensure appropriate diversity to test if the 
translated and culturally-sensitive materials we develop are fit for purpose.  
We have not used power calculations for detecting effect sizes in this evaluation, as hypothesis testing 
is not the aim. Our aims are to 1) recruit participants to test different user experiences (opportunities 
and challenges) that arise as a result of using tool and; 2) to capture a diversity of: referrer types 
(GPs, school staff, social care professionals, parents/carers); within-referrer characteristics (age, 
gender, ethnicity, dis/ability); CAMHS provider (CAMHS configuration; rural/urban). Our purposive 
sampling approach will be targeted at maximising the diversity of referrers and CAMHS sites and 
supporting accessibility testing of the tool. Our sampling strategy will be informed by our diversity data 
from EN-CAMHS 1 and by the stakeholders consultations in WP1.  
Identification and recruitment of CAMHS professional stakeholders will be supported by our extensive 
network of CAMHS collaborators. Recruitment of key referrers is supported by our school and primary 
care collaborators, as well as links to key referrers provided by our CAMHS sites. We will not directly 
target individuals, just share adverts about the study around collaborating organisations and networks.  

 
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Recruitment of CYP and their families will be supported by our CAMHS networks, adverts on social 
media and websites, and our third sector collaborators (MQ, Calm Connections, Anna Freud Centre).  
We shall extend our focus group invitations beyond our collaborating sites to ensure we capture a wide 
diversity of CAMHS stakeholder perspectives. 
 
6.3.2    Consent 
All potential participants will be asked to provide informed consent to participate in any of the data 
collection stages i.e. roundtables, focus groups, workshops, testing the tool, quantitative data collection, 
or semi-structured interviews. They will be provided with a Participant Information Sheet and Consent 
Form.  
Once a potential participant has expressed interest in taking part in the relevant data collection stage 
they will have the opportunity to review the Participant Information Sheet and Consent Form which are 
integrated into the referral form. The Information Sheet will detail the nature and objectives of the study 
and has been developed in accordance with NHS guidance. The information sheet and the consent 
form will be developed in consultation with both our YPAG and PPAG. 
Participants will be given sufficient time to understand the information they are given and to weigh up 
the information in order to make an informed decision. They will be given the opportunity to ask any 
questions about the research if they want to and will be given the option of a Microsoft Teams meeting 
or telephone call with a member of the study team to ask any questions about the research. The Consent 
Form will be collected prior to the relevant data collection stage through the digital referral tool, therefore 
only written, electronic consent will be sought and obtained. Participation is voluntary and participants 
will be informed that they have the right to withdraw at any time without giving a reason. As per the 
Consent Form, any previous information collected from research activity participation before withdrawal 
will still be used in the study. As the Consent Form is integrated in the digital referral tool, participants 
will have 24 hours to decide whether or not to take part. 
6.3.3  Payment  
PPI Payment will follow the NIHR INVOLVE recommended rates. CYP and parents/carers will be paid for 
their involvement in the focus groups, at a rate of £25 per hour of activity. Professional CAMHS 
stakeholders will not be offered payment, unless agreed otherwise. We will be asking professional 
stakeholders to join focus groups during the working day for which they are paid, and therefore we will 
not be paying them for their time. We have included ‘unless agreed otherwise’ to allow for a discussion 
for any individuals who may have to take time out of work to participate, as then we will pay them for 
their involvement.  
 
7 
ETHICAL AND REGULATORY CONSIDERATIONS 
The project will require NHS Ethics and HRA approvals, and UREC approval for WP1. As a project 
team, we have extensive experience completing ethical applications. All our previous NHS Ethics and 
HRA applications have received approval. We shall address a number of ethical issues throughout the 
study, including: informed consent, data confidentiality, safety, burden, distress and risk. 
7.1 
Assessment and management of risk 
7.1.1 Consent and Safeguarding 

 
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We have extensive experience of obtaining informed consent from participants in digital health 
research. We shall follow standard ethical procedures for gaining informed consent from participants 
in research studies. An information sheet and consent form approved by the ethical committee 
describing the study will be provided to all potential participants.  
Consent will be confirmed at the beginning of the focus groups, roundtables, workshops and semi-
structured interviews, and participants will be reminded that they can leave the discussion at any time, 
without giving an explanation. The consultations will be facilitated by at least 2  researchers who will aim 
to ensure that a friendly and positive environment is created. 
Participants may be asked about their experiences with the CAMHS referral system, either as 
professionals, referrers, parents/carers or CYP themselves.  
We do not envisage that the consultations will be distressing for professional participants. For 
parents/carers or CYP who have had difficult experiences with the referral process, discussing their 
experiences may be distressing. For this reason, we have developed a distress protocol which the 
research team will follow if people are affected by the topics within the focus groups and want to seek 
help. Participants will also have the option to leave to join a breakout room with one researcher if 
needed. We do not expect there to be significant safety, burden or distress and risk issues to address, 
therefore research activities are unlikely to cover topics which result in distress. Our digital tool is a 
supportive referral tool to enable appropriate CAMHS referrals to be made. The tool will contain links to 
local sources of mental health support, and will clarify that it is not to be used for crisis support. It will 
contain links to emergency support lines and advise users in distress to contact the relevant support 
services (GP, A&E, 111).   
We do anticipate some CYP and their parents might want to discuss their problems and get advice. We 
have included in our Information sheet that we are not asking anyone to share details of their own mental 
health, but based on this feedback, we have made this clearer and included that we will not be offering 
advice or guidance on the referral process or about people’s mental health issues. We will also make 
sure to include this statement at the beginning of all stakeholder consultations, to remind participants 
that we are not asking them to share their mental health problems.  
 
7.1.2 Data security, protection and confidentiality 
Data security, data protection and confidentiality are particularly relevant to the development and 
implementation of our CAMHS referral digital tools. The following issues will be addressed:  
● Information and research governance and data protection/GDPR compliance will be overseen 
by the University of Manchester Information Governance team, supplemented by specialist 
health informatics data security and confidentiality guidance from the Centre for Health 
Informatics, University of Manchester. 
● A data management plan, following University of Manchester policy, will be developed by the 
project team, and reviewed and updated throughout the lifetime of the project. 
● Data access will be strictly controlled and only available to authorised users. 
● Data sharing agreements will be established between organisations and sites as required. This 
will be overseen by the Sponsor (GMMH) and also supported by the University of Manchester 
Information Governance and Contracts team.  
● Embedding the CAMHS referral tools within CAMH sites will be through close collaboration 
with the IM&T teams at the 5-8 Trusts. All appropriate NHS Information Governance data 
security standards will be complied with. 

 
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● The importance of respecting each other will be discussed with all participants at the start of 
stakeholder consultations, it will be made clear that they should not talk about what other people 
have said outside of the discussion. Participants will not be asked to share specific personally 
identifiable information during the consultations, but they may spontaneously share information. 
● The semi-structured interviews will be recorded and transcribed. During transcription, all 
identifiable information will be removed, and the recording deleted permanently afterwards.  
● Focus groups, workshops and roundtables will not be recorded, and members of the research 
team will take notes during these consultations. 
7.1.3 Safety, Burden, Distress and Risks 
We do not expect there to be significant safety, burden or distress and risk issues to address: our 
digital tool is a supportive referral tool to enable appropriate CAMHS referrals to be made. As we have 
done in other studies,  we have developed a distress protocol which the research team will follow if 
people are affected by the topics within the focus groups and want to seek help. It will contain links to 
emergency support lines and advise users in distress to contact the relevant support services (GP, 
A&E, 111).  
 
7.2  
 Research Ethics Committee (REC) and other Regulatory review & reports 
Before the start of the study, a favourable opinion will be sought from a REC on the study protocol, 
informed consent forms and other relevant documents e.g. advertisements. The Chief Investigator will 
produce progress reports as required and the Principal Investigator will notify the REC of the end of the 
study. If the study is ended prematurely, the Principal Investigator will notify the REC, including the 
reasons for the premature termination. All correspondence with the REC will be retained. 
Within one year after the end of the study, the Principal Investigator will submit a final report with the 
results, including any publications/abstracts, to the REC. 
7.2.1  Amendments  
For substantial amendments to the REC application or the supporting documents, the research team 
shall submit a valid notice of amendment to the REC for consideration. The REC will provide a response 
regarding the amendment within 35 days of receipt of the notice. It is the responsibility of the Sponsor 
to decide whether an amendment is substantial or non-substantial for the purposes of submission to the 
REC. 
Substantial amendments that require review by the Sponsor will not be implemented until the Sponsor 
returns an approved amendment form which will then be submitted via IRAS. Any substantial change to 
an approved project should be submitted for approval as a project amendment. This will be done by the 
Project Manager via the IRAS system and will be reviewed by the PI. Guidance for how to submit an 
amendment can be found on the IRAS website under the heading of Amendment guidance - all review 
bodies. Any substantial amendments will be communicated to the relevant stakeholders at project 
meetings or via email. 
A log of all amendments will be tracked in the protocol to identify the most recent protocol version.  
7.3  
Peer review 
The study underwent independent peer review by research experts in the area by the National Institute 
for Health Research prior to the Principal Investigator receiving funding for this project. 

 
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7.4 
Patient and Public Involvement 
We will hold bimonthly 1-hour meetings with our Young Persons Advisory Group (YPAG, n=6-10) and 
quarterly meetings with our Parents/Carers and Professionals Advisory Group (PPAG; n=6-10). We will 
establish mechanisms for incorporating feedback from these groups into our work, ensuring young 
people and their parents/carers/families influence decision making.  
All potential Young Person’s advisory group members will be provided with an Information Sheet and 
Consent Form via email. The Information Sheet will detail the nature and objectives of the study and 
will be developed in accordance with NHS guidance. Members will be given sufficient time to 
understand the information they are given and to weigh up the information in order to make an 
informed decision. They will be given the opportunity to ask any questions about the research if they 
want to. The Consent form will be collected prior to them joining the advisory group via email or post. 
Participation is voluntary and members will be informed that they have the right to withdraw at any 
time without giving a reason.  
PPAG members will not need to complete a consent form.  
YPAG and PPAG members will be paid £25 for their attendance at each advisory group meeting (a 
maximum of 10), both based on the NIHR INVOLVE’s guidance.  
We will work with our YPAG and PPAG to develop the topic guide for the stakeholder focus groups. We 
will feed back the discussions of the advisory groups for consideration at the focus groups in an iterative 
manner to allow the topic content to evolve. Process/pathway mapping outcomes and data analysis will 
be discussed at the YPAG/PPAG meetings. This will a) ensure the advisory groups are informed about 
emerging findings b) identify any gaps/problems in the data and analysis c) ensure the direction of the 
research remains aligned with their priorities. Our PPI groups and activities will be fully supported 
throughout the project. 
7.5 
Protocol compliance  
Accidental protocol deviations can happen at any time. They must be adequately documented on the 
relevant forms and reported to the Principal Investigator and Sponsor immediately.  
Deviations from the protocol which are found to frequently recur are not acceptable, will require 
immediate action and could potentially be classified as a serious breach. 
7.6  
Regulatory Review & Compliance  
Before any site can enrol patients into the study, the Principal Investigator or designee will ensure that 
appropriate approvals from participating organisations are in place. Specific arrangements on how to 
gain approval from participating organisations are in place and comply with the relevant guidance. 
Different arrangements for NHS and non NHS sites are described as relevant. 
For any amendment to the study, the Principal Investigator or designee, in agreement with the 
sponsor will submit information to the appropriate body in order for them to issue approval for the 
amendment. The Principal Investigator will work with sites (R&D departments at NHS sites as well as 
the study delivery team) so they can put the necessary arrangements in place to implement the 
amendment to confirm their support for the study as amended. 
 
7.7 
Indemnity 
This study is sponsored by Greater Manchester Mental Health NHS Foundation Trust and standard 
GMMH insurance and indemnity will apply.  

 
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7.8 
Access to the final study dataset 
The co-PIs, the Project Manager, the project researchers, the statistician, and the qualitative analyst will 
have access to the final study dataset. Other members of the research team will be allowed access if a 
formal request describing their plans is approved by the steering group. 
 
8 
DISSEMINATION POLICY 
8.1  
Dissemination policy 
The datasets arising from the study will be protected by know-how, copyright and database rights (which 
are automatic rights and do not need to be registered). The copyright for the foreground IP will be held 
by GMMH. 
The draft final report will be due to the NIHR two weeks after the end of the contract. The NIHR will 
contact the team at least three months before this time with more specific advice. Further guidance on 
writing the draft final report can be found on the Information for Authors webpage. This guidance is 
regularly updated and will change during the lifespan of the project. We must make sure to use the most 
up to date guidance when drafting the report.  
8.2  
Outputs  
Key indicators of success will be defined by the following criteria: 
● Digital referral platform successfully tested across minimum 5 CAMHS. 
● Stakeholders successfully recruited to roundtable events and prioritisation of features consultation. 
● CAMHS referral technical standards defined. 
● Co-design of digital tool completed with outputs produced and published. 
● Quantitative referral data collected and analysed from CAMHS sites. A reduction in the proportion 
of unsuccessful referrals is achieved when made through the ENCAMHS platform compared to the 
usual referral processes. 
● Following AMUsEd framework, engagement and usage metrics with the digital platform 
demonstrate that the platform is usable and acceptable to referrers. 
● Qualitative intervention data successfully collected and analysed. Qualitative interviews 
demonstrate usability and acceptability of the platform to referrers and key stakeholders, including 
GPs, school staff, health and educational professionals and CYP and families/carers themselves. 
Qualitative interviews demonstrate a preference for the platform by referrers and key stakeholders, 
including GPs, school staff, health and educational professionals and CYP and families/carers 
themselves. 
● Evaluation successfully completed. 
● Sustainability plan developed that secures future plan for the CAMHS digital tool supported for use 
within the NHS. 
 
Specific outputs for WP1 
● Report detailing the changing CAMHS landscape (from roundtables) and how the digital tool aligns 
with newly configured CAMH services. 
● Clear set of priorities and requirements for the revised CAMHS referral process, ranked by Must 
Have, Should Have, Could Have and Won’t Have (MoSCoW) to enable the technical build in Work 
Package 2. 
● A set of technical referral standards for the digital tool for development in WP2. 
 
Finally, we aim to produce 4 peer-reviewed academic publications during the project.  

 
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8.3  
Dissemination Strategy 
Policy Input: We shall influence policy and practice through direct contact with NHS partners and 
governments and by feeding information about the digital referral platform over time and different 
regions. Many of our project team and collaborators are influencers at national and regional policy level 
(e.g., Abel; Chitsabesan; Ranote; Jiva). We shall also input directly to professional groups (e.g., Faculty 
of Child and Adolescent Psychiatry).  
Website: A page on the GM.Digital Research Unit website will be established and updated regularly 
throughout the project. It will link to social media feeds which will keep the content fresh and will include 
project updates in engaging formats accessible for lay audiences. Our collaborator network (particularly 
the CAMHS.Digital Research Advisory Group) and advisory groups (YPAG and PPAG) will contribute 
materials (blogs, vlogs, podcasts) which can be shared widely with lay audiences.  
Social media: We will not set up a specific media (Twitter, Facebook) account for the project, but instead 
leverage the combined extensive social media networks of our project team and collaborators including: 
MQ, Anna Freud Centre, Youth Connection, Calm Connections, GMMH media team. All partners have 
agreed to help with social media dissemination. We shall also mobilise our collaborator YP and digital 
collaborators to share project findings through their multimedia channels and networks (e.g., the 
CAMHS.Digital podcast series).  
Dissemination via MQ: Our collaborator MQ, the leading charity for mental health research in the UK, 
are fully committed partners in this project and costed to support with stakeholder recruitment through 
their extensive networks, conducting engagement activities such as focus groups and roundtables and 
dissemination activities, for example, engaging key stakeholders. MQ are also leading WP4 which 
involves the sustainability of the digital tool, their role within this is to 1) understand how to drive and 
support implementation nationally and, 2) lobby national stakeholders for support and implementation. 
MQ collaboration will be coordinated by the project PM and the funded RA.  
Conference/Webinars/Events: We shall host a series of conferences, webinars and events throughout 
the duration of the project. We shall host a PPI engagement conference in partnership with our YPAG 
and PPAG to convey our findings to a public and lay audience. We shall host a stakeholder workshop 
to present and discuss the findings of this research. We shall exploit our longstanding and extensive 
connections with national-level NHS representatives (Public Health Leads, DoH Directors of Mental 
Health, NHS England CAMHS Leads, MQ and Wellcome MH Lead) to convene a round table discussion 
about how our findings present new avenues for service improvements.  
Guidance on disseminating research can be found here: https://www.nihr.ac.uk/funding-and-
support/documents/funding-for-research- studies/manage-my-study/How-to-disseminate-your-
research/dissemination- guidance.pdf 
 
8.3  
Authorship eligibility guidelines and any intended use of professional writers 
All study team members who make a substantive contribution to reading and writing the final report will 
be granted authorship on the final study report. 

 
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Interventions: Viewpoint J Med Internet Res 2019;21(2):e10966. https://doi.org/10.2196/10966  
43. Ritchie, J. and Spencer, L., 2002. Qualitative data analysis for applied policy research. 
In Analyzing qualitative data (pp. 173-194). Routledge. 
44. Ritchie, J., Lewis, J., Nicholls, C.M. and Ormston, R. eds., 2013. Qualitative research practice: 
A guide for social science students and researchers. sage. 

 
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45. Nvivo 11 (n.d.). URL: https://help-
nv11.qsrinternational.com/desktop/concepts/about_framework_matrices.htm (accessed 25 
June 2023). 
 
 
 
 
 
 

 
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10.  
APPENDICIES 
 
10.1 
Appendix 1- Required documentation  
List here all the local documentation you require prior to initiating a participating site:  
1. CVs of the research team 
2. Participant Information Sheet (PIS) 
3. Consent Form 
4. Demographics Questionnaire 
 
10.2  Appendix 2 – Schedule of Procedures 
 
Procedures 
Visits  
Screening 
Baseline 
WP1 
WP2 
WP3 
Informed consent 
x 
 
x 
x 
x 
Demographics 
 
x 
x 
x 
x 
Focus Group 
 
 
x 
 
 
Workshops 
 
 
 
x 
 
Interview  
 
 
 
 
x 
 
 
10.3 
Appendix 3 – Amendment History 
Amendment 
No. 
Protocol 
version no. 
Date issued 
Author(s) of 
changes 
Details of changes made 
 
0.1 
08/02/2024 
HT 
 
1 
1.0 
02/05/2024 
HT, CSP, 
LH, LAC 
Updated version number, changed 
Principal Investigator phrase to be 
used consistently throughout, 
phrase of research question 3 
updated, CSP and LH updated their 
protocol contributors section, small 
changes to sections 1, 2, 3.2, 4.1 
(reviewed by LAC, statistician), 6.3.2, 
7.1.2, 8.3, one reference updated. 
2 
1.1 
24/06/2024 
KMA 
PI KMA added comments and made 
small changes throughout document 
for HT to address. 

 
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3 
1.2 
03/07/2025 
HT, PW 
Addressed KMA’s comments, 
formatting, changes in sections 2, 3, 
4, 6.2.1, 6.3.1, 8.1 (comment from 
PW), 8.3 
4 
1.3 
17/07/2025 
HT, PW 
PI PW updated protocol 
contributors, comments on study 
summary, keywords, 4.1 – comment 
about formatting of references, 
additions in WP4, comments on 
sections - 7.2, 7.4, 8.1, 8.3 
5 
2.0 
01/09/2025 
HT 
HT addressed all comments in 
sections on previous versions, apart 
from 1 comment in section 2 (PW) 
and 1 comment in section 4 (LAC) 
which needed to be discussed 
further. 
6 
2.1 
28/02/2025 
HT 
Resolved comments from previous 
version. 
Sponsor review feedback responded 
to (Table 1). 
7 
2.2 
31/03/2025 
HT 
Further feedback from Sponsor 
responded to (Table 2). 
 
 
Table 1 
Protocol (ensure safety 
section states all SAEs 
must be reported to the 
sponsor) 
 
p. viii - Research questions do not correspond with research 
questions in the IRAS – please ensure these are consistent 
 
Page numbers missing from contents page and incorrect in footers. 
References to page numbers based on Word toolbar at bottom of 
page. 
 
1 BACKGROUND 
Please clarify how poor quality referrals link to CAMHS being seen 
as gold standard by families and referrers being unaware of 
alternative primary care services – perhaps clearer to say that 
these two factors lead to inappropriate referrals. 
 
2 RATIONALE 
Incomplete sentence in point 4.  

 
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3 RESEARCH QUESTIONS/AIM(S) 
Please distinguish between primary and secondary 
questions/objectives  
 
SECTION 4 STUDY DESIGN (etc.) 
p.20 - correct ‘realting’ to ‘relating’ 
p.21 – when listing CAMHS providers please specify which Trust 
they belong to and then list the locations (e.g. GMMH – Bolton and 
Wigan CAMHS; Black Country and Healthcare – Sandwell and 
Dudley) 
p.22 – please resolve Lesley-Ann Carter’s comment  
p.22 – is this section complete? Stray colon at end of last 
sentence? 
p.23-24 - Please remove any content from this paragraph which is 
not specifically about data analysis and move it to the relevant 
sections where work packages are described 
 
SECTION 5 STUDY SETTING 
p. 25 – please use Teams for video conferencing 
 
SECTION 6 SAMPLE AND RECRUITMENT 
p. 26 – please specify which languages are ‘supported’ 
p.27 – please clarify sentence ‘We shall aim to make the referrers 
included representative of the propositions of different refers that 
happens in clinical practice.’ 
p.28 – will participants be given the opportunity to discuss the 
research with someone over the phone prior to consent, or will all 
communication be via written media? 
Please confirm (for clarity) that only written consent is being 
sought. 
 
7 ETHICAL AND REGULATORY CONSIDERATIONS 
p. 29 As per IRAS review, we will need to discuss appropriate 
IG/GDPR arrangements 

 
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p.30 It is CI’s responsibility to produce progress reports, rather 
than PI.  
The HRA no longer requires submission of annual reports so please 
remove relevant sentence. 
p. 31 – please rephrase sentence so that ‘Principal 
Investigator/Principal Investigator’ is removed 
 
STUDY FLOW CHART (p.34) 
Should WP2 also have a connector to WP3? 
 
Table 2 
Protocol (ensure safety 
section states all SAEs 
must be reported to the 
sponsor) 
 
p. viii - Research questions do not correspond with research 
questions in the IRAS – please ensure these are consistent 
addressed 
 
Page numbers missing from contents page and incorrect in footers. 
References to page numbers based on Word toolbar at bottom of 
page. Addressed  Please add page numbers to the table of 
contents 
1 BACKGROUND 
Please clarify how poor quality referrals link to CAMHS being seen 
as gold standard by families and referrers being unaware of 
alternative primary care services – perhaps clearer to say that 
these two factors lead to inappropriate referrals. Addressed  
 
2 RATIONALE 
Incomplete sentence in point 4. addressed 
 
3 RESEARCH QUESTIONS/AIM(S) 
Please distinguish between primary and secondary 
questions/objectives addressed 
 
SECTION 4 STUDY DESIGN (etc.) 
p.20 - correct ‘realting’ to ‘relating’ addressed 
p.21 – when listing CAMHS providers please specify which Trust 
they belong to and then list the locations (e.g. GMMH – Bolton and 

 
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8 
Wigan CAMHS; Black Country and Healthcare – Sandwell and 
Dudley) addressed Please remove Bedfordshire and Luton NHS 
Foundation Trust and replace with East London NHS Foundation 
Trust  
p.22 – please resolve Lesley-Ann Carter’s comment addressed 
p.22 – is this section complete? Stray colon at end of last 
sentence? - addressed 
p.23-24 - Please remove any content from this paragraph which is 
not specifically about data analysis and move it to the relevant 
sections where work packages are described addressed 
 
SECTION 5 STUDY SETTING 
p. 25 – please use Teams for video conferencing addressed 
 
SECTION 6 SAMPLE AND RECRUITMENT 
p. 26 – please specify which languages are ‘supported’ addressed 
p.27 – please clarify sentence ‘We shall aim to make the referrers 
included representative of the propositions of different refers that 
happens in clinical practice.’ addressed 
p.28 – will participants be given the opportunity to discuss the 
research with someone over the phone prior to consent, or will all 
communication be via written media? addressed 
Please confirm (for clarity) that only written consent is being 
sought. addressed 
 
7 ETHICAL AND REGULATORY CONSIDERATIONS 
p. 29 As per IRAS review, we will need to discuss appropriate 
IG/GDPR arrangements – discussed in meeting with ethics. 
p.30 It is CI’s responsibility to produce progress reports, rather 
than PI. addressed 
The HRA no longer requires submission of annual reports so please 
remove relevant sentence. addressed 
p. 31 – please rephrase sentence so that ‘Principal 
Investigator/Principal Investigator’ is removed  
addressed 
 

 
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STUDY FLOW CHART (p.34) 
Should WP2 also have a connector to WP3?  
Addressed Some of the original flowchart is visible underneath, 
please try to remove.