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COMMISSIONERS Care Pathways A tool used to guide health professionals and women on what their care should look like. Clear care pathways. Incomplete, confusing carer pathways. Clear care pathways Care pathways that are comprehensive and clearly defined can be a facilitator. "…those referral pathways are pretty simple if they’re clearly articulated." Evidence level: Moderate Parts of the care pathway affected: Assessment, Referral. Key literature: Nithianandan N, et al. 2016 Incomplete, confusing care pathways Incomplete, unclear or confusing care pathways can be a barrier. "Numerous phone calls and a large amount of paperwork are required to complete the screening and referral process". Evidence level: Moderate Parts of the care pathway affected: Assessment, Referral. Key literature: Boyd RC, et al. 2011 Recommendations We recommend commissioners designing clear and comprehensive referral and care pathways. Examples of care pathways for NHS perinatal mental health services can be found on The Future NHS Platform for National Perinatal Mental Health: Maternal mental health services-> MMHS Resources-> 3. Pathways & system delivery models. We recommend commissioners design integrated care ensuring collaboration within and between services. Back to Commissioners

Commissioners Care pathways Appropriate and timely services Funding Back to Conceptual Framework

Service Manager Organisational aspects Characteristics of services across care pathway Characteristics of assessment Characteristics of treatment Back to Conceptual Framework

The Team. We are a team of researchers, clinicians and people with lived experience from City University London. We have collaborated with researchers at the universities of Sussex, Kings College, Stirling, Oxford, York, Hull, the NCT and Maternal Mental Health Change Agents. We are now collaborating with health professionals and researchers from Homerton University Hospital NHS Foundation trust, East London NHS Foundation trust and NIHR ARC North Thames. Members of the core project team and research group are given below. Susan Ayers Professor of Maternal and Child Health, City, University of London I lead MATRIx and specialise in perinatal mental health, particularly anxiety and birth trauma. I have worked in this area for 25 years and before being a researcher I was a mum and single parent which showed me first hand the need for research evidence to drive change in this area. Women’s voices are at the heart of what we do and everyone who takes part in our research has the potential to make a difference. We are very grateful to our MATRIx team and all our participants for helping make this happen. Becca Webb MATRIx Research Fellow, Centre for Maternal and Child Health Research, City University of London I am the research fellow for MATRIx so am conducting the reviews and working with expert stakeholders. I have led the evidence reviews and am currently working on disseminating the findings and recommendations from the MATRIx project. I am a mum and when I was pregnant saw for myself how important the work we do is. I was able to experience the newly commissioned perinatal mental health services myself, and while they were amazing, there is still lots of work to be done. Nazihah Uddin MATRIx Research Assistant, Centre for Maternal & Child Health Research, City University of London I was the research assistant for MATRIx. I am a radiographer and completed my Masters in Clinical Research in 2019. I also work part-time as the administrator for the Centre for Maternal and Child Health Research at City, University of London. I am pleased to work on MATRIx to make a difference to the care women get in pregnancy. Liz Ford Senior Lecturer in Primary Care Research, Brighton & Sussex Medical School I am a Senior Lecturer in Primary Care Research at Brighton & Sussex Medical School. I have worked in various postdoctoral positions at the University of Sussex, Barts and the London Medical School, and Brighton & Sussex Medical School. My research focuses on mental health in primary care and community settings, with a particular focus on methods for using electronic health data such as patient records. My interest in perinatal mental health started with my doctoral research on Childbirth-related post-traumatic stress disorder. Judy Shakespeare General Practitioner (GP), Oxford I am a retired GP with a longstanding interest in perinatal mental health. I previously worked as the GP champion for perinatal mental health at the Royal College of General Practitioners and published the report Falling through the Gaps: Perinatal mental health and General Practice. I also previously worked at the University of Oxford National Perinatal Epidemiology Unit. Abigail Easter Senior Lecturer in Maternal and Newborn Health, Kings College London I am Senior Lecturer in Maternal and Newborn Health in the Department of Women and Children's Health at King's College London, and Deputy Lead for the Maternity and Perinatal Mental Health Theme of the NIHR Applied Research Collaboration (ARC) South London. I completed my PhD in the impact of Eating Disorders for pregnancy, birth and motherhood. My current research focuses on maternal and perinatal mental health, and using implementation science to bridge the gap between maternity and mental healthcare services to help optimise care for women and families. Agnes Hann Research and Evaluation Manager, NCT I work for the NCT as a Research & Evaluation manager and work with researchers in perinatal mental health and vulnerable groups (including young parents, single parents). I have worked in social research for over ten years. I worked in mental health research at the McPin Foundation and completed my PhD in Anthropology, with a focus on gender and economy. Jennifer Holly Research and Evaluation Manager, NCT I am a health services researcher with a background in improving services for women affected by abuse, mental health problems and problematic substance use. As NCT’s Research and Evaluation Manager, I lead the organisation’s academic and clinical partnerships including several studies about perinatal mental health. Georgie Constaninou Research Fellow, City University of London I am a research fellow in the Centre for Maternal and Child Health Research at City, University of London. My background is in health psychology, with an interest in parents’ experiences of care including: high risk pregnancies and care for infants and children with serious health complications. I have experience in qualitative research and am the lead research fellow on this project. Aaliyah Shaikh Consultant researcher, City University of London I am the PPIE Lead on this project. I have taught on the perinatal mental health module on cultural awareness needing to be embedded in every aspect of PMH care. My PhD thesis explored British Muslims’ experiences of the perinatal period. I am passionate about trauma informed awareness and education becoming a core part of healthcare and the need for cultural safety and faith-based needs in PMH services being better provided. I was born through a traumatic birth to a young migrant mother and experienced firsthand the difficulties that arise through development thus would like to contribute to making a difference in this field. I am committed to a community-based approach to involvement in healthcare as an element of creating change that addresses deeply rooted complex health inequalities with a holistic approach. Danni Lamb Senior Research Fellow, NIHR ARC North Thames I am a senior research fellow for the NIHR ARC North Thames. My work focuses on using mixed methods to evaluate the implementation of complex health services and interventions. My previous work focussed on mental health services and interventions, particularly acute mental health services such as Crisis Resolution Teams and Acute Day Units. Emma Finlayson Perinatal and Maternal Mental Health Specialist Midwife, Homerton Hospital I am an experienced midwife with a demonstrated history of working in the hospital & health care industry. I have extensive perinatal mental health and infant mental health experience and knowledge. I am also a trainee Psychodynamic Therapist. Justine Cawley Trustwide Lead for Perinatal Mental Health at East London NHS Foundation Trust I am an experienced Clinical Nurse with a demonstrated history of working in the hospital & health care industry. I am highly skilled in Quality Improvement, Nursing, Inpatient Care, Psychiatry, and Nursing Education. I am the lead for perinatal mental health at ELFT, and I will provide guidance and expertise throughout the project. Tamsin Bicknell Consultant Midwife, Public Health and Safeguarding at Homerton Hospital I have experience in direct care for vulnerable women, safeguarding, and service development focused on reducing health inequalities, improving experiences and outcomes for those with complex psycho-social lives. I have a particular interest in those experiencing removal of a baby at birth, substance and alcohol use in pregnancy, and trauma-informed care. I will provide guidance and expertise throughout the project.

HEALTH PROFESSIONALS Health professionals' knowledge Health professionals' knowledge about perinatal mental health symptoms and referral pathways can influence implementation and delivery of care, as well as whether women disclose their symptoms and access care. Knowledge about perinatal mental illness. Confidence of health professionals . Knowledge about referral pathways . Knowledge about perinatal mental illness Health professionals having good knowledge about perinatal mental health symptoms can be a facilitator to care, whereas a lack of knowledge can be a barrier. "’Oh I was seeing so and so but when they found out I was pregnant they discontinued my medication.’” That…happens frequently. Very frequently…their provider won’t [prescribe] because of their pregnancy." Evidence level: Moderate Parts of the care pathway affected: Contact with health professionals, Assessment, Access to treatment. Key literature: Byatt N, et al. 2013 Confidence of health professionals Related to knowledge, a health professional with high levels of confidence in addressing perinatal mental health can be a facilitator. Low confidence can be a barrier. "Look, I feel insecure at the moment, as I have not yet had the chance to try [this therapy with a client], and I have to practice…". Evidence level: Moderate Parts of the care pathway affected: Assessment, Referral, Provision of optimal treatment. Key literature: Bina R, et al. 2018 Knowledge about referral pathways Health professionals having good knowledge about services and referral pathways can be a facilitator to care, but lack of knowledge can be a barrier. "The health professionals interviewed in both Trusts were not always aware of the services available in other areas of the health service and recommended the provision and circulation of named links to support more joined up working". Evidence level: High Parts of the care pathway affected: Assessment, Referral, Access to treatment. Key literature: Rowan C, et al. 2010 Recommendations We recommend health professionals participate in continuing professional development activities related to perinatal mental health including participating in high quality training [LINK TO TRAINING RECOMMENDATION]. Service managers and policy makers could consider health professionals receiving accreditation for participating in training. Back to Health Professionals

Policy Makers Immigration status Economic status and healthcare costs Back to Conceptual Framework

INDIVIDUAL Fear of Judgement Fear of judgement from others is another barrier to women deciding to seek help or disclosing symptoms, and to implementing and delivering care successfully. Fear of being seen as a bad mum. Fear of social services. Fear of being seen as a bad mum The fear of being seen as a bad mum can act as a barrier to perinatal mental health care. "With my health visitor, I try not to let too much out, because then she won’t think I am a bad mum". Evidence level: Moderate Parts of the care pathway affected : Deciding to consult, Deciding to disclose. Key literature: Button S, et al. 2017 Fear of social services Fear of social services involvement can act as a barrier to perinatal mental health care. "I didn’t want anyone’s help to be honest after I had [my previous child]. I was so frightened that people would think I couldn’t cope and take her off me." Evidence level: High Parts of the care pathway affected: Deciding to consult, Deciding to disclose. Key literature: Megnin-Viggars O, et al. 2015 Recommendations We recommend the development an NHS Mental Health Campaign focused on stigma reduction of perinatal mental illness. We recommend the development of information aimed at increasing awareness of perinatal mental illness such as (1) infographics/leaflets disseminated through maternity services, primary care, third sector organisations (e.g. NCT), and antenatal classes (2) short animations & videos disseminated via social media on: Symptoms of different PMI. How they are common, and when to seek help. Causes. How to access professional support. Services available. Maternity professionals and their role in PMH care. Myth busters on social services: For example, an analysis of reasons child protection plans were put in place in England in 2019 shows the most common reason was abuse or neglect (54.4%). Parent’s disability or illness only counted for 2.5% of referrals. Back to Individual

HEALTH PROFESSIONALS Getting it right first time It is important that health professionals take responsibility for each woman they see to help facilitate women’s journey along the care pathway. Dismissing or normalising women’s symptoms. Focussing only on infant. Not recognising help seeking. Appearing too busy. Tick box delivery. Dismissing or normalising women’s symptoms Health professionals being dismissive or normalising women’s symptoms is a barrier. "I did ask for support, but I didn’t really get any. And the health visitor’s response — ‘Well you seem like you’re doing all right’”. Evidence level: High Parts of the care pathway affected: Contact with health professionals, Decision to disclose, Referral, Access to treatment, Women’s experience of treatment. Key literature: Button S, et al 2017 Not recognising help seeking Health professionals not recognising help seeking or symptoms of perinatal mental illness can be a barrier. "I purposely circled the things ’cos I’m struggling, the health visitor didn’t get back to me, which I’m really disappointed about.” Evidence level: Moderate Parts of the care pathway affected: Contact with health professionals, Assessment. Referral. Key literature: Button S, et al 2017 Focussing only on infant Health professionals only focussing on the infant may be a barrier. "… somebody [is] not just checking on the baby but actually sitting down with you asking, ‘how are you doing?’ ‘What can I do to help you?’ ". Evidence level: Low Parts of the care pathway affected: Contact with health professionals, Decision to disclose, Provision of optimal treatment. Key literature: Megnin-Viggars O, et al. 2015 Appearing too busy Appearing to busy can be a barrier, whereas making time to address perinatal mental health symptoms is a facilitator. "The health visitor said something like: ‘You know, in this community we have to look after a thousand and something babies.’ And that instilled in me the feeling, like: ‘Oh, they are very busy these people, and I don’t have to be bothering them all the time’”. Evidence level: Moderate Parts of the care pathway affected: Contact with health professionals, Assessment, Decision to disclose, Access to treatment, Provision of optimal treatment, Women’s experience of treatment Key literature: Button S, et al 2017 Delivery of assessment Behaviours shown by health professionals during assessment can either be a barrier (i.e. carrying out assessment in a tick-box way) or a facilitator (i.e. taking a personalised approach). "I sometimes feel that they're [assessment tools] a little bit silly so I usually sort of introduce the questions, ‘we're interested in sort of how they're feeling emotionally or how they feel about the pregnancy …’ and we just go through them. But I try to sometimes re-phrase them a little bit because, depending on who I'm talking to basically, if I'm seeing a 16 year old girl who's scared out of her wits, I've got to be careful how I ask that sort of question because it's important to find out". Evidence level: Moderate Parts of the care pathway affected: Assessment, Decision to disclose. Key literature: Williams CJ, et al. 2016 Recommendations We recommend service managers employ an adequate number of workers to ensure health professionals have enough time to address women’s needs. We recommend service managers implement perinatal mental health good practice guides. This guide provides information on symptoms of perinatal mental illness, communication skills when discussing perinatal mental illness, what to do if a woman discloses perinatal mental illness and case studies of good practice. We recommend health professionals participate in continuing professional development activities related to perinatal mental health including taking part in high quality training. Back to Health Professionals

POLICY MAKERS Immigration Status Whether women were born in the country they are currently living in and how this may impact their perinatal mental health care journey. Not being born in the country currently living in. NHS Charging regulations. Not being born in the country currently living in Not being born in the country women are currently living in. "…as Hispanics we do not have insurance and money is what really counts." "Because when you’re legal you can take the child to the daycare and look for a job. . . If you don’t work, it’s like you’re dead, being alive. We want our papers so we can progress; not so we can leave or be a load to anyone, but just to work—to buy a home and give our kids a good life. . . I get depressed because I can’t live like normal people because I’m always thinking if I leave or if I stay. . . " Evidence level: High Parts of the care pathway affected : Decision to consult, Assessment, Referral, Access to treatment, Provision of optimal treatment. Key literature: Hansotte E, et al. 2017 Schmied V, et al. 2017 NHS Charging regulations Despite the NHS being free for UK residents, there are NHS charging regulations in place for those who are not residents of the United Kingdom. NHS charging regulations have a large negative impact on pregnant and postnatal women, in terms of their mental health - increasing stress and anxiety, their vulnerability to domestic violence and maternal deaths that may have been prevented through access to antenatal care. Furthermore, Public Health England has identified NHS charging for maternity care as one of the key issues that exacerbates poorer health outcomes for women and babies of colour. Recommendations We recommend support for refugee or immigrant women to be able to access care without being penalised (e.g., through deportation, through charging systems). We recommend the suspension of NHS charging regulations until a full independent review of their impact on individual and public health, simplification of charging criteria and exemptions and safeguards to protect vulnerable patients and ensure they are not denied the care they are entitled to, is carried out. This recommendation is in line with: (a) a joint statement set out by the Royal College of Physicians, the Royal College of Paediatrics and Child Health, the Royal College of Obstetricians and Gynaecologists and the Faculty of Public Health in 2018, calling for a suspension of NHS Charging; (b) a statement from the Academy of Medical Royal Colleges in 2019 released a statement calling for the suspension of the NHS charging regulations until a full independent review on individual and public health is carried out; (c) a statement from the Royal College of Paediatrics and Child Health calling for an end to NHS charging due to its adverse effects on child health and wider public health; (d) a report from Maternity Action calling for the immediate suspension of charging for NHS maternity care given the deterrent effect on women’s access to maternity care. Back to Policy Makers

INDIVIDUAL Deciding to seek help There are two steps to women deciding to seek help. These are recognising that something is wrong and having the knowledge and understanding to know where to go to seek help. Supported to recognise something was wrong. Not knowing what services are available. Supported to recognise something was wrong When women are supported to recognise something was wrong, this acts as a facilitator to women perinatal mental health care. "That’s when I thought, you know: “Something is really wrong here, I need to go to the doctors if I’m thinking about killing myself.”" Evidence level: Moderate Parts of the care pathway affected: Deciding to consult. Key literature: Button S, et al. 2017 Not knowing what services are available Women not knowing what services are available and where to go to seek help may be a barrier to perinatal mental health care. ". . .you don’t know where to go, what to do, who to trust…". Evidence level: Low Parts of the care pathway affected: Deciding to consult. Key literature: Megnin-Viggars O, et al. 2015 Recommendations We recommend the development of information aimed at increasing awareness of perinatal mental health illness such as (1) infographics/leaflets disseminated through maternity services, primary care, third sector organisations (e.g. NCT), and antenatal classes (2) short animations & videos disseminated via social media on: Symptoms of different perinatal mental illnesses. The best way to cope with symptoms and when to seek help. We recommend this information is developed by individual trusts, or third-party organisations (e.g., the NCT) in collaboration with the NIHR Applied Research Collaboration (ARC) Perinatal Mental Health Themes, The Perinatal Mental Health Network Scotland, the National Managed Clinical Network, and the Royal Colleges. We have provided some guidance for women navigating an imperfect system here. Back to Individual

INTERPERSONAL Shared decision making Shared decision making between healthcare professionals and women. Shared decision making. Resources. Shared decision making Shared decision making between women and health professionals may be a facilitator to perinatal mental health care. "Women with postpartum psychosis discussed the need for greater consultation and negotiation in antipsychotic prescription… … it would have been good I think to have been listened to about the side effects…It’s just they’re managing your risk.., maybe that’s what they’ve got to do clinically, but I wanted a bit more of a human face of it really." Evidence level: Low Parts of the care pathway affected: Referral, Access to treatment, Provision of optimal treatment, Women’s experience of treatment. Key literature: Megnin-Viggars O, et al. 2015 Resources NHS England provides guidance on shared decision making. Recommendations We recommend health professionals participate in continuing professional development activities related to perinatal mental health including participating in high quality training. To ensure there are opportunities for health professionals and women to form trusting relationships, we recommend continuity of carer across the care pathway. Back to Interpersonal