Results and submissions : REF 2021

Changing the way follow-up services are delivered to benefit cancer survivors

Submitting institution: University of Central Lancashire
Unit of assessment: 3 - Allied Health Professions, Dentistry, Nursing and Pharmacy
Summary impact type: Health
Is this case study continued from a case study submitted in 2014?: No

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1. Summary of the impact

Beaver’s research has benefitted the NHS by demonstrating that Telephone Follow-Up is equally effective, and as beneficial to patients treated for cancer, as hospital-based follow-up. It has impacted on policy and clinical practice guidelines for the British Gynaecological Society, Cancer Australia and Cancer Care Ontario in Canada. By demonstrating that Telephone Follow-Up is clinically cost effective with high levels of patient satisfaction we have changed the way these services are delivered. Both patients and practitioners have expressed their satisfaction with Telephone Follow-Up, with one Gynaecology Oncologist commenting “ This is the preferred choice by patients as it is delivered at home… by specialist nurses who know the patients and can spend more time discussing their holistic needs” A recent on-line consensus meeting of 121 global participants made recommendations to implement Telephone Follow-Up to lower the risk of COVID-19 transmission during cancer treatment. Beaver’s research with both breast and endometrial cancer patients was referenced, demonstrating international impact, as face to face hospital appointments get replaced with alternative forms of follow-up, including Telephone Follow-Up.

2. Underpinning research

There are 2,500,000 cancer survivors in the UK. As the number of cancer survivors continues to increase, Hospital-Based Follow-Up, involving regular face to face outpatient appointments over several years, has become increasingly unsustainable practically and economically. Over the last 16 years Beaver and colleagues have designed and evaluated an innovative strategy to shift the format of follow-up care from a hospital-based approach to one targeted at meeting the individual needs of patients. Harnessing the skills of clinical nurse specialists, Beaver designed and adapted a telephone intervention process to provide appropriate and timely information for patients treated for different types of cancer. Randomised controlled trials (RCT) were carried out to evaluate the clinical and cost effectiveness of nurse-led telephone follow-up. Previous research (pre-University of Central Lancashire employment) with breast and colorectal cancer patients has impacted on national policy guidelines and has featured in recommendations from Macmillan Cancer Support for cancer patient follow-up.

Between 2011 and 2014 a large RCT was carried out comparing hospital and specialist nurse-led Telephone Follow-Up for women diagnosed and treated for endometrial cancer known as the ENDCAT trial. ENDCAT was the first clinical trial on endometrial cancer follow-up in the world to report its findings to the clinical and academic community. Beaver and colleagues worked collaboratively with NHS gynaecology oncologists, clinical nurse specialists, and with seven clinical nurse specialists responsible for the delivery of telephone follow-up across five NHS hospital Trusts in North West England. The trial recruited 259 women; 129 were randomised to telephone follow-up and 130 to hospital follow-up. The research demonstrated that patients were highly satisfied with Telephone Follow-Up, were not more anxious than with face-to-face hospital-based appointments or clinical examinations, and their welfare was unaffected by the shift to an equally effective service [1]. The trial included an economic evaluation to examine the cost effectiveness of Telephone Follow-Up and found that this approach was cost neutral to the NHS even though nurses spent longer on the telephone than doctors providing Hospital-based Follow-Up appointments [2]. Although cost savings for the NHS could not be demonstrated, there were opportunity costs for the NHS in freeing up consultant time and clinic space.

Qualitative interviews with patients and clinical nurse specialists identified that Telephone Follow-Up was viewed very positively. Patients found this approach to be convenient, discrete and personal, enhancing confidence and providing reassurance. The clinical nurse specialists found the structured format of the telephone intervention enabled them to utilise their skills and knowledge to identify and meet patients’ holistic needs [3].

On completion of the ENDCAT trial, patients were asked to score and comment on their satisfaction with the service using a survey design [4]. 211 (89.4%) patients returned the questionnaire; 105 in the telephone group and 106 in the hospital group. The telephone group were more likely to indicate that appointments were on time and were more likely to report that their appointments were thorough. Based on a scale of 1 (very unsatisfied) to 10 (very satisfied), the telephone group reported a mean score of 9.48 for satisfaction with telephone follow-up and a mean score of 9.40 for overall satisfaction with information received.

4. Details of the impact

Beaver’s work impacts on patients and health care staff in the North West of England, it has a national impact on policy and clinical guidelines, and an international impact in relation to the COVID-19 pandemic.

Patient Benefit*

Endometrial cancer is the fourth most common cancer in women and has increased by 57% over the last 30 years, directly linked to obesity. According to Cancer Research UK 2019, between 2014 and 2016 there were approximately 9,300 new diagnoses in the UK every year. Providing adequate support and follow-up for cancer survivors continues to stretch NHS resources. Beaver’s innovative approach to follow-up care for patients treated for endometrial cancer aimed to provide patients with the information they need to self-manage and to reduce the burden on hospital outpatient clinics. Patients receiving Telephone Follow-Up from specialist nurses were highly satisfied with the care and information received, and the service provided [1]. 78% reported receiving all the information they needed. The time to detection of recurrent disease was similar with five in each group. For the telephone group – there was a median of seven days and for the hospital group a median of nine days. Patients receiving Telephone Follow-Up saved time, money and had less time off work. The estimated return journey costs per patient for hospital consultations were GBP11.47, whilst productivity costs were approximately twice as high under Hospital Follow-Up [2]. Patients indicated that they preferred telephone to face to face hospital follow-up [3]. Telephone follow-up was convenient for patients, reassuring and promoted self-management [3]. Comments on the telephone service were overwhelmingly positive, primarily related to the convenience of the service, knowing who to contact if a problem arose, and being reassured by the consultation.

*“Very happy with the follow-up care. Preferred telephone appointments as long trips to the hospital weren’t necessary.” Patient ID 24 [4, A]

**“ *Overall very satisfied with telephone consultations. I have a contact number and am assured I can ring at any time with any queries I might have. This is something I would highly recommend.” Patient ID 06 [4, A]

Health Care Professional Benefit

Clinical nurse specialists gained satisfaction from fully utilising their skills and providing patients with the information they needed to self-manage. To date, specialist nurses have conducted hundreds of telephone appointments with patients and continue to receive positive feedback with high levels of patient satisfaction with the service. On trial completion, five hospitals in the North West region continued to provide nurse-led Telephone Follow-Up for patients treated for endometrial cancer (Lancaster, Barrow, Preston, Burnley, Blackpool) and report an intention to extend the service to other patients.

“I love it…, I think it's really, really good I, I really enjoy [it] and I look forward to doing the clinic and once the trials finished I certainly will carry on with it and I will see other patients as well so I will be extending the clinic [telephone] to suit all gynae patients rather than just endometrial.”* (Clinical Nurse Specialist 02) [J]

“The service is seeing more and more ladies with gynaecological cancers and more time is able to be allotted to these ladies due to the phone clinic … I find the clinic (telephone) efficient, less time consuming but as thorough as face to face and easy to perform.” Barbara Allton testimonial, Gynaecology Oncology Clinical Nurse Specialist, [B1]

Benefit to the NHS:

Currently, findings from the ENDCAT trial are referenced nationally as high-level evidence, Grade A [C]. It guides clinicians in follow-up service provision for patients diagnosed and treated for endometrial cancer. The British Gynaecology Cancer Society (BGCS) published national clinical guidelines in 2018 stating: ‘Alternative modes of follow-up such as telephone follow-up do not appear to be inferior to hospital-based follow-up, in terms of quality of life for stage I endometrial cancer’ [C, p36]. More recently, in 2019, Beaver was invited on to an expert panel meeting on gynaecological cancer follow-up. The panel recommended implementation of remote monitoring including Telephone Follow-Up for intermediate and high-risk endometrial cancer patients, thus extending our inclusion criteria. Furthermore, Telephone Follow-Up was also extended to the new patient group of ovarian cancer patients. These recommendations will inform revised national clinical guidelines for the follow-up care of gynaecological cancer patients [D].

Testimonials from senior clinical staff indicate the reach and significance of our work:

*“Telephone follow-up is now delivered across the UK and beyond with the evidence base delivered by UCLAN’s department of oncology nursing. This mode of cancer care is supported by Macmillan and other patient focused organisations. This is the preferred choice by patients as it is delivered at home and delivered by specialist nurses who know the patients and can spend more time discussing their holistic needs…Professor Beaver’s work has changed the landscape of follow-up care in the UK and provided the robust evidence to support this.” Dr Pierre Martin-Hirsch, Gynaecology Oncologist, President of the British Society of Colposcopy and Cervical Pathology . [B2]

We received recognition of the importance of our work in the field of nursing, the largest health care workforce in the NHS, when the ENDCAT research and clinical team were shortlisted for the prestigious RCNi awards [E].

International reach

Patients with cancer can be in an immunosuppressed state due to treatment. As such, they are high risk in terms of morbidity and mortality during the COVID-19 pandemic. As hospitals globally are considered a source for contracting the virus, face to face appointments have been cancelled or replaced with alternative forms of follow-up, including Telephone Follow-Up. Hence, our work on Telephone Follow-Up is now likely to have an even greater impact, providing evidence on the effectiveness of this approach. Academic papers and reports are already being published that reference our work (Simcock et al 2020, Kang et al 2020); [F, G]. Simcock et al (2020) describe a consensus meeting of 121 global participants with recommendations to implement Telephone Follow-Up to lower the risk of COVID 19 transmission during cancer treatment and follow-up [F]. A paper published in the United States, referencing our work, reports on the importance of telemedicine during the COVID-19 pandemic for head and neck cancer patients [G]. A report published by the Australian government defining a policy framework for the management of patients with cancer during the pandemic [H] makes repeated reference to the Simcock et al. (2020) paper. Although only recently published, the findings from the ENDCAT trial have been referenced as supporting evidence in the Cancer Care Ontario (Canada) guidelines for Follow-up after Primary Therapy for Endometrial Cancer [I].

One practitioner commented that Beaver’s research was “…making a difference to women effected by breast cancer in this pandemic as we've adapted to offer information, support and the opportunity to discuss their needs using experience and knowledge from your research.” [B3]

5. Sources to corroborate the impact

Survey data from a questionnaire submitted to ENDCAT trial participants on completion of the trial. Beaver K et al (2020). Endometrial cancer patients’ preferences for follow-up after treatment: a cross-sectional survey. European Journal of Oncology Nursing. Published on-line 31st January 2020. Vol 45. DOI: 10.1016/j.ejon.2020.101722.
Testimonials from senior clinical staff:

B1 – Testimonial from Barbara Allston, Gynaecology Oncology Clinical Nurse Specialist

B2 – Testimonial from Dr Pierre Martin-Hirsch, Gynaecology Oncologist, President of the British Society of Colposcopy and Cervical Pathology

B3 – Testimonial from Macmillan Lead Breast Care Nurse Specialist

Sundar, Balega, Crosbie et al (2018), Uterine Cancer Guidelines: Recommendations for Practice. British Gynaecology Cancer Society, London UK. Pages 36,37,38 55 https://www.bgcs.org.uk/wp-content/uploads/2019/05/BGCS-Endometrial-Guidelines-2017.pdf (Accessed 18 March 2021)
Outcome from an expert panel meeting organised by the British Gynaecological Cancer Society, held in London in March 2019. Newton C et al (2020) British Gynaecological Cancer Society recommendations and guidance on patient-initiated follow-up (PIFU). Journal of Gynaecological Cancer. DOI: 10.1136/ijgc-2019-001176.
The ENDCAT trial team were shortlisted for the RCNi annual nursing awards.

E1 – YouTube clip: https://www.youtube.com/watch?v=I6UwRN_5jQY (Accessed 18 March 2021).

E2 – Featured article in Nursing Standard March 2017. Nursing Standard is the UK's highest circulating nursing publication and reaches over 96,000 nurses every week.

Report on a global consensus meeting to determine recommendations for working practices for oncology practitioners during the COVID-19 pandemic. Simcock R, Thomas TV, Estes C, Filippi AR, Katz MS, Pereira IJ, Saeed H (2020) COVID-19: Global radiation oncology’s targeted response for pandemic preparedness. Clinical and Translational Radiation Oncology. 22; 55–68
An academic paper from the United States reporting on the importance of telemedicine during the COVID-19 pandemic for head and neck cancer patients. Kang et al (2020). The 3 Bs of Cancer Care Amid the COVID-19 Pandemic Crisis: “Be Safe, Be Smart, Be Kind”—A Multidisciplinary Approach Increasing the Use of Radiation and Embracing Telemedicine for Head and Neck Cancer. Cancer. DOI: 10.1002/cncr.33031
Cancer care in the time of COVID-19: A conceptual framework for the management of cancer during a pandemic (May 2020). Australian Government and Cancer Australia. https://apo.org.au/node/305841 (Accessed 18 March 2021)
The ENDCAT trial was referenced as supporting evidence in the Cancer Care Ontario, Canada, clinical practice guideline on Follow-up after Primary Therapy for Endometrial cancer (2017).
Williamson S, Beaver K, Gardner A, Martin-Hirsch P (2018). Telephone follow-up after treatment for endometrial cancer: a qualitative study of patients’ and clinical nurse specialists’ experiences in the ENDCAT Trial. European Journal of Oncology Nursing. 34; 61-67

Influencing Change in UNICEF’s Baby Friendly Hospital Initiative in the UK and W ...

Submitting institution: University of Central Lancashire
Unit of assessment: 3 - Allied Health Professions, Dentistry, Nursing and Pharmacy
Summary impact type: Health
Is this case study continued from a case study submitted in 2014?: No

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1. Summary of the impact

The research conducted by the Maternal and Infant Nutrition and Nurture Group (MAINN) has created UK and worldwide impact through their influence on the WHO/UNICEF Baby Friendly Hospital Initiative (BFHI), the global initiative to optimise infant feeding practices. The research has been highly influential, ensuring that UNICEF’s embrace of bonding and relationship development between parent and infant is at the centre of infant feeding care. The group’s research is extensively cited in the UNICEF UK’s supporting evidence publication, leading to changes in the standards of the UNICEF UK Baby Friendly Initiative, staff education, university education, assessment processes and associated resources. This paradigm shift towards relationships is now being replicated in over 150 countries, delivering positive impact on breastfeeding rates and contributing toward an associated impact in nine Sustainable Development Goals.

2. Underpinning research

Professor Dykes and colleagues in the Maternal and Infant Nutrition and Nurture Group (MAINN) have been publishing in protection and support of breastfeeding since 1995. This has included researching and critiquing the challenges to implementing the Global WHO/UNICEF Baby Friendly Hospital Initiative. The work detailed builds on the group’s previous impact case study but presents new research that is creating fresh impacts. The Baby Friendly Hospital Initiative was launched in 1991 and comprises an accreditation process involving the achievement of key standards, the introduction of policies, auditable clinical practices and associated staff education. In its early form, the Initiative focused upon removal and reversal of hospital practices that were unhelpful to breastfeeding mothers and their infants.

In the current REF window, the most significant impact by the University of Central Lancashire team has been on the UNICEF UK Baby Friendly Initiative (BFI). In the UK UNICEF have developed accreditation processes for the initiative for hospitals, communities, neonatal units, and undergraduate midwifery and health visiting University courses. The narrative below outlines this portfolio of research, referencing the six most influential underpinning pieces of work, all of which are published in peer-reviewed journals and highly cited within the disciplines represented by the staff in the unit.

Dykes and Flacking’s 2010 paper [1] drew on their seminal work in maternity and neonatal services. They argue that relationships should become central to breastfeeding at an organisational, family and staff-parent level thus shifting the focus from breastfeeding as a mechanistic and productive process, concerned primarily with nutrition, to a relational one. The mechanistic approach, which developed last century alongside the medicalisation of birth, has contributed to perceived breast milk insufficiency, the major cause of women discontinuing breastfeeding. Shifting the emphasis to relationships rather than milk production reduces pressure on women and facilitates maternal-infant physical and emotional closeness [1].

Dykes was a key author on a meta-synthesis of women’s perceptions and experiences of breastfeeding support. The review ﬁndings emphasise the importance of person-centred communication and relationships in breastfeeding support. Using 31 studies the synthesis results proposed that support for breastfeeding was a spectrum, with empathic presence at one end, perceived as effective, and disconnected encounters at the other, perceived as ineffective or even discouraging and counterproductive. The ﬁndings emphasise the importance of person-centred communication and relationships in breastfeeding support [2].

Dykes co-authored a systematic review of the evidence of structured, compared with non-structured, breastfeeding programmes in maternity care settings on breastfeeding initiation and duration rates [3]. The review concluded that a structured program, such as the Baby Friendly Hospital Initiative, was beneficial, contributing to a longer duration of breastfeeding and should be implemented globally.

A review paper was authored by Dykes, Thomson, Hall Moran and Flacking in collaboration with an interdisciplinary European neonatal network, Separation and Closeness Experiences in the Neonatal Environment (SCENE) [4]. This paper provides neuroscientific and health science evidence for the importance of facilitating close relationships between parents and infants in neonatal intensive care units.

Thomson and Dykes conducted NHS funded evaluation projects of Baby Friendly Initiative implementation [5,6], concluding that when it is implemented using a predominantly top-down hierarchical approach, there is a lack of staff engagement and the development of institutionalised practices. The exclusive focus on breastfeeding can marginalise mothers who don’t want to, or can’t, breastfeed. However, when a ‘hearts-and-minds’ approach is utilised with grass roots involvement, with relationships being central, it becomes more acceptable to both staff and the mother-baby dyad.

4. Details of the impact

Following an update of the evidence, UNICEF has extensively revised the Baby Friendly Initiative with fifteen publications by staff led by Professor Dykes cited as ‘important’ key supporting evidence. [A]

Changing Cultural Values in Maternity Care by Challenging Conventional Wisdom

The group’s research has contributed to a paradigm shift and subsequent reconfiguration of the Baby Friendly Initiative. This transformational change in cultural values involves cessation of the previous exclusive focus upon promotion and support of breastfeeding to one that centres on parent-infant relationships and the grass-roots involvement of staff and parents. The shift is underpinned by the group’s research which challenged the conventional wisdom and stimulated debate. It highlighted three factors. First, the importance of positive and reciprocal social interactions between mother and infant known to stimulate infant neural pathways and so develop the brain. Second, how person-centred communication was most suitable to optimise infant feeding practices and improve maternal mental health. Third, the need to engage service-users and staff in a participatory and collaborative approach to implement the Baby Friendly Initiative.

Fifteen of MAINN’s publications are cited extensively in the 174-page document Evidence and Rationale for the UNICEF UK Baby Friendly Initiative: a resource for practitioners, published 12^th September 2013 [A]. Dykes’ contribution to the resource is acknowledged, ‘We extend a special thanks to Fiona Dykes, Professor of Maternal and Infant Health, Maternal and Infant Nutrition and Nurture Unit (MAINN), UCLAN, for her significant contribution to the development of this book’ (p.12). She is referenced throughout, and in one key instance UNICEF has chosen to emphasise her words regarding the need to enhance cultural understanding in order to change practices: ‘Without this socio-cultural knowledge any interventions may fail due to contradictory cultural beliefs and or/constraints upon families in taking up or implementing designated changes.’ [A] This document drew extensively on the work of Dykes and MAINN and “underpinned changes to the UNICEF UK Baby Friendly Initiative standards, curricula, implementation guidance and assessment process.” [K]

Transforming Practice

Since the Evidence and Rationale document went online in September 2013, it has influenced substantial changes to the standards of maternity care, staff education, education standards in universities, health care assessment and accreditation processes and associated resources [A]. This, in turn, has contributed towards improved professional performance described by the WHO Guidelines (p. 11) as ‘often transformative, changing the whole environment around infant feeding’, and where, ‘becoming designated (as a Baby Friendly Hospital) has been a key motivating factor for facilities to transform their practices.’ The results are that ‘ care in these facilities became more patient centred; staff attitudes about infant feeding improved; and skill levels dramatically increased.’ [H]

The 2019, UNICEF UK document Theory of Change [B] is underpinned by the Evidence and Rationale publication [A] and associated MAINN research. Breastfeeding has a significant positive impact on both child development and public health, offering protection against childhood illnesses and protecting mothers from breast and ovarian cancers [B]. However, the decision to breastfeed and the confidence mothers have in their parenting decisions can be undermined when practitioners lack sufficient knowledge and offer conflicting information leading to mothers choosing not to breastfeed or stopping earlier than intended. Directly citing [3] the Theory of Change recommends that Institutions should ‘ …provide training, develop better policies and enhance skills across all practitioners, not just a handful of specialists.’[B] In the long term these changes are shown to have long lasting economic benefits as Baby Friendly Initiative institutions develop and maintain staff skills through training and better policies. The Theory of Change emphasises the importance of supporting and protecting breastfeeding, safer feeding and nutrition, a culture of supporting close and loving relationships and creating a skilled, supportive workforce [B]. Research cited by UNICEF UK found that Baby-Friendly Hospital designation had “…a sustained impact on continued breastfeeding.” [C2].

Size of Impact on Health and Well-Being and Professional Practice in the UK

By 15^th December 2020, 93% of maternity services and 90% of health visiting services engaged in implementation of the Baby Friendly Initiative. Full Baby Friendly Initiative accreditation is held in 60% of maternity and 73% of health visiting services. All births in Scotland and Northern Ireland, 86% in Wales and 53% in England are currently taking place in full Baby Friendly Initiative accredited hospitals. Full, independent accreditation has also been achieved by 21 children’s centres and 15 neonatal units [C1]. Approximately 500,000 births took place in these maternity units in the UK in 2019.

In UK Universities, 72% of midwifery education programmes and 28% of health visiting programmes are engaged with the Baby Friendly Initiative university award program with 44% of undergraduate midwifery courses and 17% of health visiting courses holding Baby Friendly Initiative University status [C1]. In this seven-year REF period, approximately 10,500 students have been impacted - around 1,500 per year. This training is augmented by three, separate two-day breastfeeding and relationship building courses supplied through the UNICEF Baby Friendly Initiative webpages: The Breastfeeding and Relationship Building Course. There is one course each for health professionals, for University Lecturers and for Children’s Centre Staff. The course for health professionals, updating participants on the new guidelines, was described by one participant as an, ‘Excellent course with lots of knowledge gained.’[C3]

Staff value the revised Baby Friendly Initiative standards with its relationship-based emphasis and service users feel that this approach is highly supportive to parenting [D]. In 2019, the new NHS Long Term Plan [E, point 3.18] recommended Baby Friendly Initiative accreditation across all maternity services and includes a focus on improved support for families with infants in neonatal care. The plan highlights the importance of Baby Friendly Initiative maternity accreditation in supporting breastfeeding rates, stating that: ‘All maternity services that do not deliver an accredited, evidence-based infant feeding programme, such as the UNICEF Baby Friendly Initiative, will begin the accreditation process in 2019/20.’

International Impact and Reach

Over 150 countries are engaged in Baby Friendly Hospital Initiative implementation with clear evidence available of the positive impact on breastfeeding rates [F]. Implementation of the Baby Friendly Hospital Initiative practices contribute towards UN Sustainable Development Goals (UN SDG) on reducing hunger, health and wellbeing and gender equality in addition to economic and sustainability (UN SDGs 2, 3, 4, 5, 8, 10, 12, 13). Four papers by Dykes et al and one by Hall Moran et al are cited in the WHO collation of evidence for the Baby Friendly Hospital Initiative [G], which underpins an extensively revised Implementation Guide [H]. Dykes was invited by Perez-Escamilla (Yale), co-editor of Maternal and Child Nutrition, to lead a commentary [I].

Dykes was invited, in 2015, on to the Task Advisory Group on the Becoming Breastfeeding Friendly: Global Scale up (BBF) project at Yale University, USA. Her input is acknowledged on the Yale BBF web site. In 2019, Dykes was appointed to the UK and Public Health England BBF benchmarking groups. Thomson was an invited member of an independent panel to review infant feeding options for the Welsh Government in 2019. The recommendations have received approval from the Welsh and Scottish governments and approval is pending in England. One publication [J] based on research cited above [5,6], led to Thomson’s involvement in the Public Health England media campaign on breastfeeding in public in 2015, which involved 17 radio interviews and a TV appearance.

Tackling the global challenge of hidden hunger

Submitting institution: University of Central Lancashire
Unit of assessment: 3 - Allied Health Professions, Dentistry, Nursing and Pharmacy
Summary impact type: Health
Is this case study continued from a case study submitted in 2014?: No

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1. Summary of the impact

Globally, an estimated two billion lives are affected by a chronic deficiency of essential vitamins and minerals, collectively known as hidden hunger, with the greatest burden in low and middle‐income countries (LMIC). Lowe’s programme of research and engagement has transformed nutrition support for the poorest people in north west Pakistan. It has also generated data that has been used to develop high-zinc wheat that was launched in Pakistan in 2016. Furthermore, it has informed new dietary recommendations in Pakistan, Australia and New Zealand and provided new information for the diagnosis of zinc deficiency. Finally, Lowe’s research has directly resulted in the launch of new training programmes in nutrition for researchers addressing malnutrition in Pakistan.

2. Underpinning research

Hidden hunger is a term used to describe inadequate intake of vitamins and minerals that are essential for human health and includes zinc, iron, Iodine and vitamin A. Inadequate zinc intake alone is responsible for 0.8 million deaths a year, with one-third of the global population suffering from a zinc deficiency. Pakistan has a particularly high prevalence of zinc deficiency within the population, which affects 20.6% of children and 40% of women. The consequences are profound and far reaching, at the individual, community and family level, with zinc deficiency resulting in stunted growth, poor cognitive development, poor wound healing and impaired immune function and currently costs the Pakistan government 3% of GDP. Finding a way to improve the nutritional quality of diets for the poorest people is central to meeting the United Nations Sustainable Development Goals (SDGs) particularly SDG2: End hunger, achieve food security and improved nutrition and promote sustainable agriculture.

Key to the development of strategies to tackle nutrient deficiencies is a robust evidence- based knowledge of the relationship between nutrient intake, the amount of the nutrient in the body and measurable health outcomes such as growth in children, or cognitive function in adults. With this knowledge in place, accurate estimates of the amount of a given nutrient required in the diet to prevent deficiency can be made and success of interventions designed to improve nutrient intake can be evaluated. Lowe, Moran and Dykes have undertaken a series of systematic reviews and meta-analyses to elucidate the relationships between zinc intake, status and health outcomes as part of an EC Network of Excellence from 2007-2012. The systematic reviews led to further publications emerging up to 2018, entitled European Micronutrient Recommendations Aligned (EURRECA). The research generated new data detailing the relationship between dietary zinc intake and status biomarkers, as well as growth in infants and children and cognitive function in adults and children [1-4].

Strategies for improving micronutrient intakes include: supplementation which is the provision of nutrients in the form of tablets or syrups for oral administration; fortification, the addition of nutrients to foods during processing or added to foods at the point of consumption; and biofortification, the enhancement of the nutrient content of staple foods through selective plant breeding and, or addition of nutrient rich fertilizers. All three strategies are complementary and should be used in combination to improve micronutrient intake. Salt fortification with iodine is used globally as a means to increase iodine intake. Lowe and McKeown, alongside Monique Lussier (Northumbria University), conducted an evaluation of a public health campaign to increase awareness and use of iodised salt in a resource poor setting in Pakistan. The research elucidated the communication and pathways of influence between community elders, members and health care providers that led to a significant increase in the knowledge and uptake of iodised salt in a hard to reach, marginalised community [5].

Biofortification has the potential to reduce hidden hunger in the poorest and most marginalised communities worldwide. The nutritional enhancement of staple crops through traditional plant breeding programs provides a sustainable, low cost way to raise the baseline micronutrient intake on a population scale. Lowe, Ohly and Martin Broadley (University of Nottingham), alongside colleagues at Khyber Medical University in Pakistan and the Abaseen Foundation, have undertaken a study of the effectiveness of consuming flour made with biofortified wheat (Zincol2016) on zinc intake and status and the cultural acceptability of this approach among beneficiaries and stakeholders. The research revealed that dietary zinc intake could be increased by up to 50% through consumption of biofortified wheat flour, and that community members and farmers were open and willing to engage with this strategy for improving health [6]. This strategy has the advantage that it can be implemented at population level and does not require individuals to change their eating behaviours.

4. Details of the impact

Lowe is an Associate Director at United Kingdom Research and Innovation (UKRI), a 50% secondment of her role since 2019. She is the Challenge Leader for the Food Systems Portfolio within the Global Challenges Research Fund. Within this role Lowe is a thought leader for global research [A].

Lowe served on the steering group of the International Zinc Nutrition Consultative Group (IZiNCG) from 2015-2018, an internationally renowned group of zinc nutrition experts, whose main focus is to assist and promote efforts to reduce global zinc deficiency, predominantly in low-income countries focusing on the most vulnerable populations. Through publications of research to establish the best practice for the study of zinc and technical briefs, the IZiNCG has become the worldwide ‘go-to’ guide for the definitive technical information on zinc nutrition research by researchers and policy makers [B].

As a result of the research there has been an impact by providing new data which has been used for the setting of dietary recommendations. Lowe and Moran are currently working with the World Health Organisation to set zinc recommendations for 0-36-month-old children. Furthermore, by providing new data for assessing the effectiveness of dietary interventions to improve zinc intake and by engaging with communities, policy makers, academics, and decision makers there has been a change in knowledge, attitudes and practice around nutrition support in the poorest communities.

Providing new data used for the setting of dietary recommendations

Lowe’s research has directly impacted three separate international government policies: the Pakistan Dietary Guidelines for Better Nutrition, 2018 [C], the European Food Safety Authority New Dietary Recommendations for Zinc [D], and the Nutrition Guidelines for Cystic Fibrosis in Australia and New Zealand, 2017 [E].

The Pakistan Dietary Guidelines for Better Nutrition is a government document, produced with support from the Food and Agriculture Organization of the United Nations. They were created using new scientific research and cite Lowe et al. in the context of evidence that the diets in Pakistan are low in micronutrients. Indeed, half of the Pakistani population, 100 million people, is deficient in one or more essential nutrient. This document is a resource for policy makers and multi-sectoral professionals to create appropriate nutritional programmes and policy to improve the nutrition and wellbeing of the population [C].

The European Food Safety Authority recommendations use the research published by the EURECCA Network as the most up to date recommendations for zinc intake worldwide. There is considerable variation in the previously published intake recommendations produced by WHO (2004), Institute of Medicine (2002) and IZiNCG (2004) recommendations. IZiNCG evaluated the European Food Safety Authority recommendations against the previously published values [B]. They identified that one of the major causes of variance in the intake recommendations from the different panels was largely attributed to differences in the proportion of zinc absorbed from their habitual diets. This was governed mainly by their phytate content (a component of dietary fibre), which is a known inhibitor of zinc absorption. Using the most recently published research by Lowe et al, the European Food Safety Authority was able to set dietary zinc requirements for adults at four levels of dietary phytate intake. This is of particular importance for informing dietary interventions in LMIC settings where plant-based diets, high in phytate, are commonly consumed.

These impacts address UN Sustainable Development Goal, specific target 2.2. Which aims by 2030 to end all forms of malnutrition.

Providing new data for assessing the effectiveness of dietary interventions to improve zinc intake

The research described here has impacted the work of the international expert Biomarkers of Nutrition for Development (BOND) programme (2011-2015), funded by the US National Institutes of Health, and the Bill and Melinda Gates Foundation. The aim is to help meet UN Sustainable Development Goal, specific target 2.1 to end hunger and ensure access, particularly for people in vulnerable situations, to safe, nutritious and sufficient food all year round. BOND have published a comprehensive report that provides a definitive position statement on biomarkers of zinc status for use in human nutrition studies. This report has been used by Australia and New Zealand to develop their cystic fibrosis (CF) guidelines on zinc assessment, dietary guidelines and interventions. Patients with CF are at increased risk of zinc deficiency for numerous reasons including pancreatic insufficiency, malabsorption, chronic inflammation and increased oxidative stress. Up to 40% of children and adolescents with CF are zinc deficient. The recommendations used in the guidelines have been approved by the Australian Chief Executive Officer of the National Health and Medical Research Council [E].

Engaging with communities, policy makers, academics, and decision makers to change attitudes and practice in the poorest communities

Research is currently being conducted by Lowe and Broadley, and colleagues in Pakistan in a programme of research entitled Biofortification with Zinc for Eliminating Deficiency (BiZiFED) [F, G]. The aim of the BiZiFED project is to explore the potential for zinc-rich wheat (Zincol-2016) to increase dietary zinc intake and reduce zinc deficiency on a population scale in Pakistan [L]. Zincol-2016, was developed using traditional plant breeding techniques by HarvestPlus and recently released in Pakistan. Publications from EURECCA and BOND were directly used to set the target grain zinc content during the development of Zincol-2016 by HarvestPlus [H]. According to the Head of Nutrition at HarvestPlus “Our program had to decide which of the existing dietary intake standards had the most valid scientific base and convened a technical zinc nutrition experts’ consultation at the NIH (Bethesda, MD) that was linked to the BOND project and fortunately included Dr Nicola Lowe. I am convinced that as a result of her authoritative and poised interventions during the consultation and her professional commitment to food-based solutions, the body of experts reached a consensual recommendation that became part of HarvestPlus-Nutrition work plan and resulted in revising up our preliminary zinc requirements by 50-80% and consequently the wheat and rice zinc breeding targets. A few years later, her 2016 Review of Dietary Zinc Recommendations became the basis for our current zinc target calculations. Had that not occurred, our program would have wasted several million dollars in RCTs with nutritionally inadequate (India) wheat and (Bangladesh) rice cultivars.” [H]

Lowe recently met with the Prime Minister, Imran Khan, to talk about her research to address malnutrition in Pakistan and the biofortification strategy [I].

Central to the research programme in north west Pakistan undertaken by Lowe and her partners, is engagement with communities, local decision makers, stakeholders and academics working together in equitable partnership [J]. This interaction over a period of a decade has influenced knowledge, attitudes and practice around nutrition support for poor communities. It has also influenced education for researchers in this field, resulting in the launch of new Nutrition MSc and MPhil degrees at Khyber Medical University. Furthermore, it has supported nutrition support programs in local hospitals and health centres through our partner NGO, Abaseen Foundation, attracting funding from the Department for International Development (DFID), Wellcome Trust, UKRI/GCRG and the British Council. The project supported by DFID (Poverty Action Fund GPAF-INN-044.) enabled the scale up of services, including nutrition support. During the three-year intervention period (2014-17), a total of 79,358 beneficiaries were provided with peri-natal care and/or nutrition support, including 11,159 women of reproductive age (15 to 49 years) and approximately 11,712 children under five. A total of 98 staff were trained: 22 professional staff (one doctor, two nurses and 19 support staff) and 76 volunteers recruited from the local community (36 outreach workers and 40 traditional birth attendants) [K].

The communities we work with in north west Pakistan are some of the most marginalised in the world. They experience high levels of poverty, bonded labour often involving young children as part of the workforce, and limited access to basic necessities. Poor quality diets lead to Hidden Hunger and compromised health which exacerbates the cycle of poverty [L]. Rashid Ali Mehdi, Crop Manager on the BiZiFED2 project stated “…our project's backbone is Zincol. Finally, if this research succeeds when we take it into trial on five hundred families and if it were to succeed, its effect will show. So, this will be the government's policy drop and then we will put it in cultural development, mills and all. On one hand, we are working on zinc and stunting and there would have been some learning and awareness. So, this is all part of its benefits.” [L]

These impacts are directly aimed at UN Sustainable Development Goal, specific targets 2.1, 2.2 mentioned above and affect specific target 2.a. This target is to increase the investment in rural infrastructure, agricultural research and extension services, technology development and plant and livestock gene banks. This has the goal of enhancing agricultural productive capacity in developing countries.

5. Sources to corroborate the impact

Lancet Comment: Helen Lambert, Jaideep Gupte, Helen Fletcher, Laura Hammond, Nicola Lowe, Mark Pelling, Neelam Raina, Tahrat Shahid, Kelsey Shanks (2020) COVID-19 as a global challenge: towards an inclusive and sustainable future. The Lancet, planetary-health Vol 4 e312-e314. DOI: 10.1016/S2542-5196(20)30168-6
International Zinc Nutrition Consultative Group (IZiNCG) website www.izincg.org (Accessed 26th January 2021)
Food and Agriculture Organization of the United Nations and Ministry of Planning Development and Reform, Government of Pakistan. (2018) Pakistan Dietary Guidelines for Better Nutrition. P. 23
Scientific Opinion on Dietary Reference Values for Zinc,’ Panel on Dietetic Products, Nutrition and Allergies EFSA Journal, Vol. 12, Issue 10. DOI: 10.2903/j.efsa.2014.3844
Saxby N., Painter C., Kench A., King S., Crowder T., van der Haak N. and the Australian and New Zealand Cystic Fibrosis Nutrition Guideline Authorship Group (2017). Nutrition Guidelines for Cystic Fibrosis in Australia and New Zealand, ed. Scott C. Bell, Thoracic Society of Australia and New Zealand, Sydney. https://www.clinicalguidelines.gov.au/portal/2584/nutrition-guidelines-cystic-fibrosis-australia-and-new-zealand (Accessed 26th January 2021)
BiZiFED BBSRC webpage http://gtr.ukri.org/projects?ref=BB%2FP02338X%2F1 (Accessed 26th January 2021)
Article in the Independent: http://www.independent.co.uk/news/science/biofortification-crops-global-hunger-super-nutritious-science-developing-world-diet-deficiencies-a8183296.html (Accessed 26th January 2021)
Testimonial letter from Nutrition Unit Head HarvestPlus
Website article on meeting with Pakistani Prime Minister Imran Khan https://jadarr9.wixsite.com/mysite/copy\-2\-of\-new\-ws2020\-page\-1
Zaman, M., Afridi, G., Ohly, H. et al. Equitable partnerships in global health research. Nat Food (2020). DOI: 10.1038/s43016-020-00201-
Ohly, Heather, Bingley, Helen, Lowe, Nicola M, Medhi, Rashid, Ul Haq, Zia and Zaman, Mukhtiar (2018) Developing health service delivery in a poor and marginalised community in North West Pakistan. Pakistan Journal of Medical Sciences, 34(3):757-760 DOI: 10.12669/pjms.343.15168
Research Partnerships to address hidden hunger in Pakistan. Project video URL: https://youtu.be/Z-8O2vVwN9U (Accessed 26th January 2021)

The Public Psychiatric Emergency Assessment Tool (PPEAT): Transforming police responses ...

Submitting institution: University of Central Lancashire
Unit of assessment: 3 - Allied Health Professions, Dentistry, Nursing and Pharmacy
Summary impact type: Societal
Is this case study continued from a case study submitted in 2014?: No

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1. Summary of the impact

The Public Psychiatric Emergency Assessment Tool (PPEAT), developed by Wright and McGlen, is the only tool of its kind in the world that enables frontline police officers to rapidly and accurately identify people with mental disorders. This has a substantial impact on Police Officers interactions with members of the public experiencing mental disorders in crisis situations and the subsequent pathways these individuals follow. More accurate identification at point of contact has led to greater numbers of people being referred to social services and enabled appropriate intervention without criminalisation. This protects these vulnerable people, the public and saves money. The PPEAT has been adopted by the College of Policing as the national professional guideline for the assessment of mental vulnerability and illness under the label of the Vulnerability Assessment Framework (VAF). The VAF is available to all 123,000 police officers in England and Wales as well as other safeguarding agencies in the UK.

2. Underpinning research

Police officers are often required to provide an immediate, emergency or unplanned response to situations involving a mentally disordered person in crisis. Consequently, they are required to make rapid judgements and decisions regarding public safety and what appears to be in the individual’s or society’s best interest. Our primary motivation for researching this work was to support police officers by developing an easy-to-use tool to assist in their assessment and response to people with a potential mental disorder. It was our hope that this instrument would improve police officers’ responses, and ultimately, the care outcomes for these vulnerable people. The adoption of the PPEAT, under the label of the Vulnerability Assessment Framework (VAF), meant that police o’ decisions were guided by a non-judgemental, person centred process. As a result, 24,000 people with mental health problems were diverted from custody into mental health services in 2014-2015 where expert assessment, care and treatment could be provided [3]

In 2008, Karen Wright and Ivan McGlen were discussing their experiences of working within Emergency Departments. Karen Wright was an Mental Health Crisis Liaison Nurse and Ivan McGlen was an Emergency Department Nurse. Both were aware of the problems police officers often experienced when they decided to bring a mentally disordered person to the emergency department. Daily, they encountered people experiencing some form of mental distress, necessitating intervention and care. Often, they were brought in by police officers in a police vehicle to the emergency department having detained them under Section 136 (S136) of the Mental Health Act (MHA) (1983a, amended 2007, p.104). Frequently, they considered the person to have a perceived mental disorder and to pose a risk to themselves, or to others. Such a decision has a human cost to the individual involved, but there is also a financial cost to the police which, in 2018, was estimated at approximately GBP2000 per person. When encountering such a person police officers often expressed frustration. They felt that they were expected to make critical health care decisions, without basic mental health awareness training. As a result, in many instances, they were not able to recognise it at all, and a person later identified as having a contributory mental disorder, was arrested.

On this basis, Wright and McGlen decided to research with police officers from Lancashire Constabulary by exploring what influenced police decision-making when they applied section 136 of the Mental Health Act. Careful research rapidly established that the solution was something that could enable police officers to make decisions and assist them in relaying their observations to healthcare staff. The key part of this, however, was that this should be done in a structured way allowing them to communicate in terms familiar to healthcare staff who could then quickly provide appropriate treatment.

With this approach Wright and McGlen developed the Public Psychiatric Emergency Assessment Tool (PPEAT) to support police officers in applying Section 136 of the Mental Health Act [1, 2]The tool was a cognitive aid, which converged and aligned an observer’s less precise impressions thereby bringing into focus a ‘mental model’ that could identify specific groups of sufferers of mental disorder. The mental model greatly improved their ability to perceive and comprehend features of mental disorder, thus helping them to communicate the symptoms of a particular condition [5] In particular, a great asset was the tool’s ability to provide structure and order during note-taking. The PPEAT therefore allowed officers to provide structured information which, though it may have little meaning to them, it could nevertheless be interpreted as significant by health care staff.

The research took its lead from the advanced trauma life support ‘ABCDE Framework’ to create a simple to follow and memorize process that officers could incorporate into their decision-making process: 1. Appearance; 2. Behaviour; 3. Communication; 4. Danger; 5. Environment. [1, 2, 4, 5]

After this initial work, Wright and McGlen redesigned and revised the Tool to support police officers, not only when making Section 136 decisions, but also within their broader response, when encountering and identifying a mentally disordered person. A unique approach was undertaken with this study where the police officer’s own behaviours were viewed through a three-level ‘Situation Awareness’ framework. This study identified that a failure to effectively identify or seek contextually relevant cues or information (Level 1), establishes flawed perceptions of features suggestive of mental disorder. Then, when the police officer seeks to ‘make sense’ of this ‘flawed’ information (Level 2), the potential for an inaccurate view of the behavioural patterns indicative of mental disorder may occur. This creates a miscomprehension of the situation and is likely to translate into an inappropriate and inconsistent (Level 3) response. This could be in the form of arresting them, rather than seeking health care support.

This study established a newly constructed view of the specific methods, rules, actions and behaviours used by police officers. It re-established the domains (appearance; behaviour; communication; danger; environment) as newly constructed concepts, capturing in detail the broad areas of focus police officers consider when they encounter a potentially mentally disordered person. A significant and unique finding was that a police officer’s ability to perceive, comprehend and respond to such people was not only determined by the presenting situation. It was determined to a large extent by their prior experience and personal views about mental illness.

4. Details of the impact

Within England, the House of Commons Home Affairs Committee estimated that between 20% and 40% of all police encounters are associated with a person experiencing some form of mental disorder or crisis. A 2019 BBC Radio 5 Live investigation found evidence that Police Forces are dealing with an increasing number of mental health incidents. Until the introduction of the PPEAT, and its successor, the PPEAT-R, the police had no evidenced based mechanism to help them identify people with mental health problems or crises, or to appropriately respond to them. This tool is currently the only one of its kind in use in the world. It is credit card sized and front and back are illustrated below:

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At a local level, in 2009 the PPEAT was first introduced within Lancashire Constabulary, and used by street-level police officers. It was also adopted by the Lancashire Independent Custody Visitors service, for the purpose of assessing the mental wellbeing of detainees. As a consequence of this work, the PPEAT received a Lancashire Police & Crime Commissioners award [A].

At an emergency tri-service event in September 2012, the PPEAT was introduced to the Metropolitan Police Service (MPS), London Ambulance Service and London Fire Brigade. The Metropolitan Police Service subsequently adopted the PPEAT when it became integrated into the Vulnerability Assessment Framework (VAF). Then, in 2014 the Home Office issued ‘Supporting vulnerable people who encounter the police: A strategic guide for police forces and their partners in which they listed the ‘Vulnerability Assessment Framework,’ using Wright and McGlen’s terms, as an ‘ABCDE tool’.[D] They noted that it was ‘used by the Metropolitan Police Service’, and that there were also ‘similar approaches in Hertfordshire, Northamptonshire and South Wales.’ The Met began training all of Greater London’s 31,000 police offers in its use [B, D]. In December 2013, the PPEAT was presented to the office of the Rt. Honourable Theresa May (Home Secretary) [D]. Frankie Westoby, now Chief Inspector of Hertfordshire Constabulary, but then Detective inspector with the Met, said: ‘My professional opinion of the PPEAT is it is a very clear and simple tool that can be used by all. Whilst I was working on the PPEAT in the Metropolitan Police, it was developed further with UCLANs permission, through Karen Wright and Ivan McGlen who were pivotal in the research and supporting the MPS [Metropolitan Police Service] in the further development, to assist in the overall identification of vulnerability. This was particularly aimed at vulnerable adults but used for all and became part of the Metropolitan Police Vulnerability Assessment Framework’ [A] .

Street triage schemes were launched in 2013 by the Department of Health due to the increased involvement of police forces with individuals suffering from poor mental health. Street Triage involves a team of people attending public events where a person appears to be suffering for a mental disorder in a public place; its introduction has been transformative, but costly, since both experienced police officers and mental health practitioners attend the scene. However, instead of enabling street-level police officers to comprehend the features of mental disorder, it added professionals to the team in order to do it. From a safeguarding perspective, it enabled the triage team to better identify such people, and, even where there has been a criminal act, refer them on to the most appropriate health or social care service to meet their mental health needs [B, C]. This shift was from a paradigm defined by an assumption of criminality, to one defined by the interpersonal; one in which police officers recognised and responded to a person’s mental health and well-being.

On 3 October 2014, the PPEAT became the assessment framework within the Safety in Mind initiative [F]. Produced in partnership with South London and Maudsley NHS Foundation Trust (SLaM), the Metropolitan Police, London Ambulance Service and UCLan, the PPEAT demonstrated the value of a common tool to improve the quality of the mentally disordered person’s assessment, care and transition through the emergency and healthcare services. In February 2014, the PPEAT was cited as a case study within the Department of Health and Concordat signatories (2014) document, Mental Health Crisis Care Concordat: Improving outcomes for people experiencing mental health crisis [G]. The PPEAT therefore had a significant impact on national policy in respect of mental health identification. Furthermore, this document noted that all front line MPS police officers were trained in the use of the PPEAT by April 2014. In July 2014, the London Strategic Clinical Networks (2014) reported the following in relation to the success of the PPEAT within Greater London: ‘Since this [Vulnerability Assessment Framework] system went live over 55,000 reports have been completed, enabling the police and partners to identify individuals that are becoming vulnerable far earlier and enabling early intervention’ [H, p.30].

In 2015, the PPEAT was adopted by the College of Policing under the name ‘Vulnerability Assessment Framework’ as the national professional guideline for the assessment of mental vulnerability and illness [I, J]. The Vulnerability Assessment Framework now forms part of the training available to all 123,000 police officers in England and Wales. It is now implicit within the National College of Policing National Vulnerability Action Plan [J, K]. The revised PPEAT-R was introduced in 2018. The use of this tool produced a number of benefits, including an increase in mental health literacy amongst police officers [A]. The PPEAT-R was a very useful adjunct to the police officers’ operational practice, achieving not only individual, but team situation awareness. Police officers used different combinations of the concepts, at different stages of their interaction, to gather information necessary to identify features of mental disorder. Chief Inspector Frankie Westoby comments: “As part of the Vulnerability Assessment Framework development, adults coming to police notice are now recorded on a police system called Merlin, these reports follow the PPEAT structure and are known as Adult Coming to Notice reports in 18/19 117,754 adult coming to notice reports were submitted across London. These are shared appropriately with partner agencies to enable early intervention where appropriate and/or to identify patterns. … The simplicity of the tool, makes it easy for officers to remember and therefore it is used. Often the risk assessments that are required are so complex, the actual vulnerability is missed and the PPEAT prevents this” [A] .

To date, the PPEAT(-R) has been used by a wide range of other agencies. Mind, and the Association of Chief Police Officers advocate the use of the PPEAT [L]. The Open University has utilised it within their ‘Collaborative problem solving for community safety’ course [M]. Humberside Police have incorporated it into their guide to vulnerability [C]. Pathway, in partnership with Lambeth Council, South London and Maudsley NHS Trust, ThamesReach, the Greater London Authority and EASL have utilised the PPEAT into their guidance for the mental health assessment of rough sleepers [N]. In 2019, the PPEAT-R was cited within the Lifesavers category of the MadeatUni initiative [O].

Towards a universal positive childbirth experience: Changing the focus of World Health ...

Submitting institution: University of Central Lancashire
Unit of assessment: 3 - Allied Health Professions, Dentistry, Nursing and Pharmacy
Summary impact type: Health
Is this case study continued from a case study submitted in 2014?: No

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1. Summary of the impact

Our research on what matters most to mothers, babies, families, and maternity care providers has directly motivated changes in World Health Organisation (WHO) maternity guidance. Because of our findings, the WHO has integrated the critically important outcome of positive childbirth experience in all their recent maternity guidelines and their associated dissemination materials. Our findings have contributed to WHO implementation strategies in nine countries. During COVID-19, our research on what matters to women has underpinned WHO infographics, and guidelines produced by the Royal College of Obstetricians and Gynaecologists and the Royal College of Midwives. The 2019 WHO global framework for action for strengthening midwifery education for Universal Health Coverage 2030 cites three of our papers on positive childbirth and midwifery.

2. Underpinning research

The need to research positive childbirth experience

Birth affects everyone. Worldwide, around 130 million babies are born annually. Safety is improving, but now there are concerns about the harms of over-intervention and lack of human rights in childbirth. Since 2001, the University of Central Lancashire Research in Childbirth and Health (ReaCH) group has been examining physiological birth, respectful, compassionate care, and positive wellbeing, based on our active engagement with mothers, families, and service providers. We are the only transdisciplinary research team worldwide that has consistently explored positive childbirth programmatically over two decades.

The research pathway

In 2001, Soo Downe led a world-first study examining interventions in ‘normal childbirth’. Since then, the University of Central Lancashire team have produced over 200 publications. Most of this work has been informed by service users input, either directly as co-investigators, or indirectly through consultation at various points with service user groups and networks. In 2013, we published a seminal qualitative meta-synthesis, stimulated by our years of work with service users that led us to believe that childbearing women might choose not to use services that do not take account of their views and experiences.This showed that, in low and middle-income countries, the failure to account for cultural and social norms and beliefs in the design and provision of antenatal care could explain sub-optimal uptake of services for women from some cultural groups. This is likely to result in excess mortality and morbidity in these sets of people [1]. Senior WHO staff noted the findings and the innovative methodology we used to integrate women’s views and experiences with implementation considerations. They commissioned us to undertake a global qualitative meta-synthesis for their 2016 Antenatal Guidelines [2] [A]. For the first time, our evidence demonstrated that, in all cultural and socio-economic settings around the world, a positive pregnancy experience was as important for most childbearing women as clinical safety. Since then, we have provided the qualitative evidence for three more WHO guidelines [A]: ‘Intrapartum’, ‘Optimizing Caesarean Section’ and ‘Uterotonics for Postpartum Haemorrhage’, in research worth approximately GBP100,000. The WHO have subsequently funded reviews relating to postnatal care, instrumental birth, and physical and verbal mistreatment in health and social care. These are currently in progress, with a total income of around GBP50,000.

Downe was co-author on two related Lancet Series, one on midwifery and one on caesarean section along with Kingdon [3, 5]. We have published nine related papers, including three qualitative systematic reviews underpinning the 2018 WHO Optimising Caesarean Section (CS) guidelines. These have emphasised the importance of positive physiological birth and that Caesarean Section can be done safely and compassionately. The WHO have subsequently funded us to undertake research in India, as part of the development of a generic protocol, to assess contexts in which their optimal CS recommendations could be implemented [6]. This protocol is informed by the contextual model of CS use, which we developed [6], and that was published in our related Lancet paper [5]. Three of our papers are cited in the 2019 WHO Framework for Action for Midwifery Education towards Universal Health Coverage 2030 [J].

Associated Research

In parallel, we were funded by the EU Horizon 2020 funded European Cooperation in Science and Technology (COST) programme to run two consecutive research networks between 2010 and 2018, worth around EUR900,000. Both were focused on the nature, implementation, and outcomes of positive, salutogenic (wellbeing-focused), physiological childbirth, involving over 120 network members - researchers, activists, service users, and policy makers - from 33 countries. The 2014-2018 network has been acknowledged as ‘world class’ by the EU, and, in 2020, was selected to showcase as one of their successful Actions. Collaborative publications include a longitudinal analysis of around 500,000 Australian mothers and babies from birth up to the age of five, demonstrating, for the first time, the long-term benefits of physiological childbirth when compared to labour induction and/or Caesarean Section [4]. The article concluded that children born by spontaneous vaginal birth had fewer short and longer-term health problems, compared with those born after birth interventions [I]. In 2020 we were funded by the ESRC under the UKRI COVID research programme (GBP494,000) to find out which maternity care organisations managed to balance personalised maternity care with safe care during the pandemic. It will also yield positive lessons to be learned from these successes for future maternity care crises, as well as for routine provision.

3. References to the research

All the following papers are peer reviewed

[1]. Finlayson K, Downe S, 2013, ‘Why Do Women Not Use Antenatal Services in Low- and Middle-Income Countries? A Meta-Synthesis of Qualitative Studies.’ PLoS Med 10(1): e1001373. doi:10.1371/journal.pmed.1001373

[2]. Downe S, Finlayson K, Tunçalp Ӧ, Metin Gülmezoglu A., 2016, ‘What matters to women: a systematic scoping review to identify the processes and outcomes of antenatal care provision that are important to healthy pregnant women.’ BJOG.;123(4):529-39 (Parallel review for what matters to women intrapartum published 2018, PLOS One) DOI: 10.1111/1471-0528.13819

[3]. Renfrew MJ, McFadden A, Bastos MH, Campbell J, Channon AA, Cheung NF, Delage D, Downe SM, Kennedy HP, Malata A, McCormick F, Wick L, Declercq E. 2014, ‘Midwifery and quality care: findings from a new evidence-informed maternity care framework.’ The Lancet, 384: 9948,1129–1145 DOI: 10.1016/S0140-6736(14)60789-3

[4]. Peters LL Thornton C de Jonge A, Khashan A, Tracy M, Downe S, Feijen-de Jong EI, Dahlen HG., 2018, ‘The effect of medical and operative birth interventions on child health outcomes in the first 28 days and up to 5 years of age: A linked data population-based cohort study.’ Birth. 45(4):347-357. DOI: 10.1111/birt.12348

[5]. Betrán AP, Temmerman M, Kingdon C, Mohiddin A, Opiyo N, Torloni MR, Zhang J, Musana O, Wanyonyi SZ, Gülmezoglu AM, Downe S, 2018, ‘C-Section Pandemic Series. Interventions to reduce unnecessary caesarean sections in healthy women and babies.’ The Lancet,13;392:1358-1368 DOI: 10.1016/S0140-6736(18)31927-5

[6]. Bohren MA, Opiyo N, Kingdon C, Downe S, Betrán AP, 2019. ‘Optimising the use of caesarean section: a generic formative research protocol for implementation preparation.’ Reproductive Health. 19;16(1):170. DOI: 10.1186/s12978-019-0827-1

4. Details of the impact

The critical importance of the positive experience of pregnancy and childbirth

In 2016, the UN acknowledged that mothers, babies, and families need to thrive as well as survive. Our research has been a significant agent of change in this field, enabling positive childbirth experience to be integrated into global guidelines and practice [A]. Our research has brought the voices of mothers, maternity care providers and healthcare policy makers worldwide into the heart of maternity care decision-making processes. This has enabled them to shape and implement policy and practice. Together, we have shifted the international conversation about what is best practice for maternity care and what recommendations should be made. Consequently, the findings of our research are directly reflected in the full titles of the WHO antenatal and intrapartum guidelines: WHO Antenatal care for a positive pregnancy experience and WHO intrapartum guidelines for a positive childbirth experience [A3, A4]. This is the first time that WHO guidelines have explicitly taken account of the needs of mothers, families and healthcare professionals, and their requests for compassionate and respectful care. The public WHO media site for the antenatal guidelines makes it clear that this is now a central concern: ‘Service providers across all levels and whether working in hospitals or local communities should embrace these concepts and consider how they can work with women, families and communities to provide positive antenatal care experience and ensure optimal uptake of ANC (ante-natal-care) services’ [B]. The importance of this new approach was endorsed by Ban Ki-moon, then United Nations Secretary-General: ‘I welcome these guidelines, which aim to put women at the centre of care, enhancing their experience of pregnancy and ensuring that babies have the best possible start in life’ [A1].

Up to December 2020, the antenatal guidelines had been downloaded more than 380,000 times from the WHO Institutional Repository for Information Sharing [A5]. The WHO has undertaken an active implementation programme, with materials based directly on our findings [B]. For example, around 50 government officials, NGOs and senior clinical midwives and doctors attended a two-day WHO workshop in The Gambia in 2018 to design a policymaker toolkit. This includes our ‘Positive Pregnancy Experience’ concept and our logic models on how the guidelines should be implemented [A2]. This programme is being rolled out in Burkino Faso, Rwanda, Zambia and India. There are around 150 key stakeholders per country, totalling around 600, and the programme is being cascaded to other regions and countries around the world. Findings from our review are included in the title and content of a WHO paper setting out an implementation framework for the ANC guidelines [A2].

For the WHO intrapartum guidelines there was a similar chain of influence, from the initial framing of the guidelines themselves, to the impact on the ground, in a range of countries, as related WHO consultative workshops. By December 2020, they had been downloaded more than 300,000 times [A5]. Demonstrating the reach of our work, Duncan Fisher OBE from the Family Institute witnessed a gathering of midwifery leaders in Trinidad in 2016. He later wrote: ‘It was a really powerful meeting - such strong feelings about the role of the midwife in championing a woman centred and family inclusive approach. [Soo Downes’] … idea that social/emotional support should be given as much weight as clinical summed it all up’ [C1].

Getting the practice of birth right under all conditions

Following our input to the WHO Optimizing Caesarean Section guidelines, our findings have been used in an additional WHO implementation programme, starting in Beirut in 2018 with 20 professional stakeholders and government agencies from across the Middle East. We provided the evidence on what would facilitate the use of nonclinical interventions to reduce unnecessary Caesarean Section and what would provide barriers to such interventions. The implementation protocol, including our model, is being rolled out in China, Argentina, Burkina Faso, Thailand and Vietnam. In October 2018 the WHO conducted a technical consultation in Madrid, attended by influential policy makers, journalists, clinicians and media experts, to explore the feasibility of mass media campaigns for informed women, families and societies and to identify opportunities to engage with policy makers to advocate, legislate and implement strategies [C2].

Our positive pregnancy and birth focus has been included in infographics produced by the WHO in relation to maternity care during the ongoing COVID-19 pandemic. These infographics have been cited by organisations and NGOs to critique and change restrictions on women’s rights in childbirth during the pandemic around the world. Soo Downe also initiated a professorial advisory group that has co-authored rapid reviews for the joint Royal College of Obstetricians and Gynaecologists/ Royal College of Midwives COVID guidelines throughout the pandemic, taking a positive health and wellbeing approach [L].

Catalysing change: optimal mode of birth and positive outcomes

Our EU COST Actions programme has generated practice change symposia for researchers, policy makers, service users, activists and clinical staff in Switzerland, Bulgaria, Spain, and Portugal with the total attendance being approximately 500. The contacts, research, and mentoring available to Yoanna Stanchova, a Bulgarian student midwife who joined our EU COST network, enabled her, along with her colleague Ilona Neshkova, to set up for the first time ever, a midwife-led maternity service and a birth centre in Bulgaria. Photographs and testimonials on their ‘Zebra’ midwifery website demonstrate the profound impact this has had on local childbearing women and their partners [E2]. EU COST Director Dr Ronald de Bruin noted: “Today we heard about how a scientist from the UK working with Bulgarian midwives led to positive changes…the midwives became better educated and established a community of midwifery professionals in Bulgaria. This clearly demonstrates the power and potential of connecting researchers from across Europe” [E1].

In Spain, the Midwives’ Contribution to Normal Childbirth Care (MidconBirth) Study notes that: ‘As a direct impact from the Action, a recommendation has been included in the Catalan Health Plan to review the normal birth model of care. One birth center has been recently opened, and some more are planned…’ Currently, 45 public hospitals are involved, from different regions of Spain [F].

The network also generated the rolling citizen-science based Babies Born Better (B3) survey [D], led by the ReaCH team. It has a database of responses from nearly 80,000 women in 22 languages, from 66 countries, with 26 relevant outputs currently on the website, from 16 countries, including publications, presentations, press releases, media coverage, undergraduate and masters dissertations, and activist campaigns [D]. In line with our unique focus, the B3 survey is designed to find out where women have the best experience of maternity care, around the world, what shapes their positive experiences, and what they would like to change.

The Rapporteur summarised the success of the COST Action “…in several countries the Action managed to get policy makers and other stakeholders involved in order to change the way care is provided to mothers and their newborns. Overall, the Action has a significant positive and long-lasting effect on maternity care.” [G]

Building on our concept of positive experiences, we edited an accessible book called The Roar Behind the Silence which has sold over 7000 copies around the world [H]. Readers’ comments show that they see the book as a catalyst for change. “I want every commissioner and CQC inspector to read this book. Every Health Minister, every NHS manager. Heads of midwifery, consultants, registrars, midwives, health care assistants, read this book too! I want doulas and mothers to read it as well. THIS is where we can find common ground and work towards admitting our mistakes and making birth better, kinder, healthier and more fun, for parents and staff” [H].

The book has generated eleven spontaneous requests for what have become called ‘Roar Tours’ from groups in India, Australia, New Zealand (twice), Norway, Ireland (four times), Canada and Germany. Over 1,000 obstetricians, midwives, service users and other stakeholders have attended these events. Local movements for change have continued following our tour dates. As one of many examples of spontaneous feedback: “It has taken me this long to process our day in Portiuncula. Words cannot express how wonderful the day was from every perspective. It was like having my ‘midwifery passion bag’ being refilled with inspiration, positivity and as you say yourselves, love…. I was at the National Director of Midwifery forum and spoke about the day and the benefits for the unit” [K].

Our commitment to research that will directly catalyse positive change in maternity care practice, experiences and outcomes around the world underpins our on-going and expanding programme. Our recent ESRC/UKRI award that will examine what has worked in the UK for maternal and neonatal services for both safe and personalised care throughout the pandemic is an example of this continuing endeavour. The end product will be a model and a toolkit for optimum care provision, co-designed throughout with stakeholders from provider groups, organisations, funding and management, and with service users, partners, families, and activist organisations.

5. Sources to corroborate the impact

[A]. Links to WHO guidelines and download figures

A1. WHO recommendations on antenatal care for a positive pregnancy experience;

A2. Lattof SR, Moran AC, Kidula N, et al. Implementation of the new WHO antenatal care model for a positive pregnancy experience: a monitoring framework. BMJ Global Health 2020;5:e002605. doi:10.1136/ bmjgh-2020-002605

A3. WHO recommendations: intrapartum care for a positive childbirth experience

A4. WHO recommendations on non-clinical interventions to reduce unnecessary caesarean sections

A5. Download figures from WHO Institutional Repository for Information Sharing

[B] *. WHO implementation and media activity relating to published guidelines

[C]. Corroborating contacts and testimonials:

C1. Email testimonial from Duncan Fisher of Family Included

C2. Dr Ana Pilar Betran and Dr Ozge Tuncalp Senior Scientific Officers, World Health Organisation

C3. Dr Olufemi Oladapou, Unit Head, Maternal and Perinatal Health, World Health Organisation

[D].Babies Born Better (B3) survey website (including outputs and impacts from the project): http://www.babiesbornbetter.org/about/ Retrieved 7^th January 2021

[E]. COST Action impact: Bulgaria

E1. News article from COST website “COST in Bulgaria for inspiring Info Day”

E2. Facebook page of Zebra Midwives (in Bulgarian)

[F]. COST Action impact: Spain https://llevadora.eu/:

[G]. COST Action Final Assessment Review for ISO1405: Building Intrapartum Research Through Health

[H]. Reviews and events related to the ‘Roar Behind the Silence’

[I]. Examples of media coverage of overuse of intervention research from BBC Radio 4, ABC and Daily Mail

[J]. WHO 2019, Strengthening Quality Midwifery Education for Universal Health Coverage 2030

[K] Email feedback from training session at Portiuncula University Hospital, County Galway, Ireland

[L] Examples of contribution to COVID-19 response and guidance from WHO and The Royal College of Midwives

Transforming emergency and hyperacute response to stroke in order to save lives and ...

Submitting institution: University of Central Lancashire
Unit of assessment: 3 - Allied Health Professions, Dentistry, Nursing and Pharmacy
Summary impact type: Health
Is this case study continued from a case study submitted in 2014?: No

Download case study PDF

1. Summary of the impact

In transforming national and international emergency and acute care for stroke, we have simultaneously improved public/call handler communication around ‘conscious level,’ enabling the targeted use of ambulances for real emergencies. Changes to the 999-call triage system mean more people with stroke are identified earlier, and transported to hospital with the highest priority level, enabling access to emergency care, increasing chances of disability-free survival. The Stroke Research Team initiated the inclusion of pre-hospital stroke care in UK national guidelines, impacting on 100,000 patients per year. Work demonstrating stroke patients can safely be nursed lying flat or sitting up allows patients worldwide to choose their preferred position, increasing patient comfort.

2. Underpinning research

Preventing death and disability from stroke depends on swift recognition of the symptoms, accurate and early identification, and emergency transportation to specialist stroke centres for treatment. Worldwide, each year approximately 20 million people experience a stroke; of them, 5 million will die and 5 million will be disabled by their stroke. There are more than 100,000 strokes in the UK every year; around one stroke every five minutes. ‘Time is brain’: stroke is recognised as a time-dependent medical emergency and for every minute in which stroke is left untreated 1.9 million brain cells die, increasing the risk of serious disability and death. To save lives and reduce disability from stroke it is vital that patients are recognised quickly and are transported to specialist hospitals to receive specialist stroke unit care and, if appropriate, clot busting drugs (thrombolysis) or thrombectomy (surgical removal of a blood clot in the brain). These treatments are proven to save lives and reduce disability but are highly time dependent. In the UK alone, stroke costs society GBP 26 billion every year.

Research by the Stroke Research Team at the University of Central Lancashire has improved public awareness and pre-hospital recognition of stroke, increased speed of arrival at hospital and influenced head positioning in acute stroke.

Improving public awareness and pre-hospital recognition of stroke

An integrative review found there was little correlation between public awareness of stroke symptoms and recommended behaviour, especially among older members of the population, ethnic minority groups and those with lower levels of education, who are the groups at greatest risk.

Emergency Stroke Calls: Obtaining Rapid Telephone Triage (ESCORTT [2006-2011]), the largest pre-hospital stroke study in the field, aimed to improve the recognition of stroke by 999 call handlers. This study, involving over 1,900 patients, explored interactions between the public and 999 call handlers during emergency calls for stroke [1]. During this study it was identified that conscious level was often difficult for callers to determine and/or communicate [2].

Telemedicine

Telemedicine is vital when access to specialist staff is limited. In acute stroke, telemedicine is used to assess and treat patients when stroke consultants are unavailable, such as out-of-hours. The Stroke Research Team led research on the development and evaluation of training in a telemedicine system for acute stroke in emergency departments [3, 4]. This underpinned the standardisation of procedures and training to facilitate the use of telemedicine in stroke, enabling early diagnosis and improved access to specialist acute stroke care. From this research, the Stroke Research Team developed a Standardised Telemedicine Toolkit to support individuals or organisations in setting up telemedicine systems for any condition. The toolkit includes implementation guidelines and example documentation.

Acute stroke care

The potential benefit of supine positioning after acute stroke in improving blood flow to the brain, versus the risk of aspiration pneumonia, have led to global variations in head positioning in clinical practice. This variability in practice across the world led to the Head Position in Stroke Trial (HeadPoST) [5, 6]. This pragmatic, cluster-randomized, crossover trial conducted in nine countries, with over 11,000 patients with acute stroke, found that patient outcomes did not differ significantly between groups allocated to a supine or semi-recumbent position.

4. Details of the impact

Research by the Stroke Research Team has influenced national and international policy, service delivery, education and training and practice, consequently improving survival and reduced disability from stroke. This has been achieved via improved public awareness and pre-hospital recognition of stroke, increased speed of arrival at hospital, increased numbers receiving stroke specialist assessment and treatment, and influence on head positioning in acute stroke.

Improving pre-hospital recognition of stroke

The integrative review ( Jones, Watkins) was cited as evidence to recommend that public awareness campaigns of the symptoms of stroke should be recurrent, targeted at those most at risk of stroke, and formally evaluated, by the 5th edition of the National Clinical Guideline for Stroke [A]. Watkins and Jones then developed, with Public Heath England, [B] the content of the Face Arm Speech Time to dial 999 (FAST) campaign in 2019, building on previous work with the Stroke Association in 2005 [C]. Following the FAST campaign an additional 38,600 people have reached hospital and received the treatment they needed [D].

Between 2013 and 2018, Watkins and Jones worked with NHS Pathways to amend NHS 111 and 999 call handler algorithms and ambulance response categories to improve recognition of stroke patients, including those with less common stroke symptoms (confirmed in a letter of support from Dr Ken Hall, Clinical Author, NHS Pathways). The inclusion of balance and visual problems and grip strength in the updated algorithm has identified an additional 82,998 stroke patients in England [E].

The improvement in the number of stroke patients correctly dispatched by Emergency Medical Services during Emergency Stroke Calls: Obtaining Rapid Telephone Triage (ESCORTT) [2] has resulted in recommendations in international guidelines including: the Canadian Stroke Best Practice Recommendations for Acute Stroke 2018 [F] and Global Utstein recommendations for emergency stroke care 2020 [G] (case study in Appendices 4.2).

During ESCORTT, an analysis of 999 calls found that the level of consciousness was often difficult for callers to determine and/or communicate [2]. This finding influenced a change of wording used within 999 call handler algorithms for all conditions in MPDS Version 13.0, September 2013, from ‘Is the patient conscious?’ to the simpler ‘Are they awake?’ [H]. MPDS is used in 42 countries and is available in 23 languages. This change affects over 8 million 999 calls in the UK alone, each year.

Stroke telemedicine

Telemedicine is the use of digital technology to enable health professionals to provide virtual assessment. The Acute Stroke Telemedicine: Utility, Training and Evaluation (ASTUTE) programme was developed in close collaboration with the introduction in 2011 of a Telestroke service throughout nine NHS Trusts across Cumbria and Lancashire. A Standardised Telemedicine Toolkit was developed to support individuals or organisations in setting up a telemedicine system. Between September 2013 and December 2021, the Telemedicine Toolkit was accessed 11,038 times from 141 countries [I]. In Lancashire and Cumbria alone, Telestroke now enables patients to have 24/7 access to expert diagnosis and treatment wherever they are, benefitting over 520 patients each year, over 4500 since 2011 [J].

Patients have benefited from being able to access specialised care that would have otherwise required travel to other locations. Feedback from patients during the trial has been positive, one patient’s family member commented “he (doctor) couldn’t have done any more I don’t think, because he asked all the questions...he looked in his eyes and he checked his weight, he asked what height and everything... so if he’d have been there I don’t think it could have been much different”

Head Position in Acute Stroke

Cited in International guidelines, the Head Position in Stroke Trial (HeadPoST) study reported that levels of disability after stroke did not differ significantly between patients assigned to a lying-flat position and patients assigned to a sitting-up position [5]. This research has informed the positioning of patients in the acute phase by showing that it is equally safe to nurse patients lying flat or sitting up in bed, without detriment to their recovery or pneumonia risk. This has improved individualised care, choice and comfort for stroke patients worldwide. [K] Feedback from a Senior Advanced Nurse Practitioner highlights the impact of the trial results in practice. “The Headpost Trial has shown us that our stroke patients have the choice to be nursed in the position that is most comfortable to them be it flat in bed or sat up without compromising them, this is so important when delivering holistic care.”

5. Sources to corroborate the impact

Intercollegiate Stroke Working Party, 2016. 2.1 Public Awareness of Stroke. National Clinical Guideline for Stroke. 5th Edition. Royal College of Physicians, London. P12.
Watkins and Jones have worked with Public Health England to inform the content of the National Face Arm Speech Time to dial 999 (FAST) campaign in 2019.

B1. Act FAST – Stroke, Public Health England campaign web page https://campaignresources.phe.gov.uk/resources/campaigns/9-act-fast---stroke/overview

B2. Email from Freuds regarding inclusion of clinical data in advertising campaign

E-mail evidence from the Stroke Association and Public Health England.
https://www.bbc.co.uk/news/health-31057650 (between 2009 and 2015 PHE said an extra 38,600 people reached hospital within this window and received the immediate medical treatment they needed).
Testimonial evidence from NHS Pathways and NHS Pathways Data.

E1. Testimonial from NHS Digital Stroke Review Lead

E2. NHS Pathways data showing the number of additional suspected stroke patients identified after contacting 999 or 111 based on the inclusion of additional stroke symptoms.

Boulanger J, Lindsay P, Stotts G, Foley NC. Section 3: Emergency Medical Services management of acute stroke patients. Canadian Stroke Best Practice Recommendations for Acute Stroke Management: Prehospital, Emergency Department, and Acute Inpatient Stroke Care, 6th Edition. International Journal of Stroke 2018; 0(0) 1-36. DOI: 10.1177/1747493018786616.
Rudd, A., Bladin, C., Carli, P., De Silva, D., Field, T., Jauch, E., Lippert, F. (2020). Utstein recommendation for emergency stroke care. International Journal of Stroke. https://doi.org/10.1177/1747493020915135 (case study in Appendices,4.2).
Changes to Advanced Medical Priority Dispatch System (AMPDS) algorithms

H1 AMPDS version 11.1 prior to research. Is he/she conscious?

H2 NHS England and NHS Improvement Ambulance (2019) Response Programme, Mandated Pre-Triage Sieve Question/ Key Words and Nature of Call Category 1 Predict types for AMPDS and NHS Pathways, P3. Is the patient awake (conscious)?

Google analytics for ASTUTE telemedicine toolkit.
Gibson J, Lightbody E, McLoughlin A, McAdam J, Gibson A, Dey E, Fitzgerald J, May C, Price C, Emsley H, Ford G, Watkins C. ‘It was like he was in the room with us’: patients’ and carers’ perspectives of telemedicine in acute stroke. Health Expectations. 2015: doi: 10.1111/hex.12333).
Guidelines for the Early Management of Patients With Acute Ischemic Stroke: 2019 Update to the 2018 Guidelines for the Early Management of Acute Ischemic Stroke: A Guideline for Healthcare Professionals From the American Heart Association/American Stroke Association. Stroke: 2019: 50:12: e344-e418. doi.org/10.1161/STR.0000000000000211.

Transforming the assessment and management of stroke survivors’ psychological and ...

Submitting institution: University of Central Lancashire
Unit of assessment: 3 - Allied Health Professions, Dentistry, Nursing and Pharmacy
Summary impact type: Health
Is this case study continued from a case study submitted in 2014?: No

Download case study PDF

1. Summary of the impact

111

Research by the Stroke Research Team has improved how psychological support is provided to people after a stroke. This work highlighted the substantial psychological needs post-stroke such as depression, anxiety and emotionalism. More than half of stroke survivors experience disabling psychological problems; 7 million worldwide and 33,000+ in the UK annually. The Stroke Team have revolutionised the assessment and management of these patients by developing reliable mood screening tools, enabling and expediting intervention and support. Motivational interviewing, an existing talk-based therapy, was specifically adapted for stroke survivors and is now recommended in national and international guidelines. The research has created new collaborations between stroke teams and psychological services and the Stroke Team have developed new ways of training staff to ensure they have the correct skills to provide tailored quality care. The management of psychological problems after stroke has been transformed with new therapies and changes to prescribing practice. The use of fluoxetine, a commonly prescribed anti-depressant has been reduced following the Stroke Team’s research, which showed increased frequency of bone fractures, negative impacting patients’ well-being.

2. Underpinning research

Prior to the Stroke Team’s research there was a lack of good-quality evidence to prevent and treat psychological problems following stroke; therefore, psychological care fell below recognised standards.

Half of stroke survivors will experience psychological problems such as depression, anxiety, emotionalism and fatigue. The Stroke Team’s systematic reviews showed that depression affects half of stroke survivors in the first year, with one-third affected at any time following a stroke, and a quarter of stroke survivors experience anxiety. These psychological problems are associated with poorer outcomes, negatively impacting patients’ recovery.

In order to improve recovery, simple, cost-effective methods are required to improve the identification and management of psychological problems. In terms of identification, the Stroke Team developed the Signs of Depression Scale (SODS) screening tool and have shown the SODS and the one-item version of the Yale-Brown Obsessive Compulsive Scale (“Do you often feel sad or depressed?”); are reliable for detecting depression in patients following stroke.

In terms of management, the Stroke Team’s research highlighted significant gaps in the evidence supporting the management of psychological problems in stroke survivors. The Stroke Team’s contribution to Cochrane systematic reviews on depression [1, 2], anxiety and emotionalism showed a need for good-quality evidence for psychological problems after stroke. The systematic review of interventions for preventing depression found the first talk-based psychological intervention to show a positive outcome was the Stroke Team’s Motivational Interviewing study. Motivational interviewing helps prevent depression, and potentially reduce death, after stroke.

The Stroke Team conducted a single-centre randomised controlled trial (RCT) of motivational interviewing (2007) [3, 6], a talk-based psychological therapy, which was adapted from its traditional use in behaviour change, to support psychological adjustment after stroke. This research is one of only two studies of motivational interviewing in managing depression in stroke patients. This RCT showed that people who received motivational interviewing in addition to their usual care, early after stroke, were significantly less likely to have depression up to a year after stroke, compared to people who received usual care alone, which generally included no psychological therapy. Receiving motivational interviewing was also associated with fewer deaths: for every 12 people receiving the motivational interviewing intervention, 1 person was less likely to die [6]. A subsequent feasibility study (2012-2013) [4], part-funded by the Northern Stroke Fund, showed that clinical NHS staff were able to deliver motivational interviewing. These results have informed the COnfirming the Mechanism of Motivational Interviewing Therapy after Stroke (COMMITS) study which is now recruiting 1200 participants across 15 UK sites.

Multicentre international randomised controlled trials (involving 5,907 participants) did not support the routine antidepressant (fluoxetine) either for the prevention of post-stroke depression or to promote recovery of function, but found their use increased the risk of bone fractures (1.4% absolute excess risk) in patients. [5]

Improving care through staff training and service organisation

The Stroke Research Team at the University of Central Lancashire is the UK’s only nurse-led stroke research unit. Since 2002, the Stroke Team have worked closely with national and international partners to improve care and education standards. In the ADOPTS study (2015-2017) (Accelerating Delivery of Psychological Therapies after Stroke) funded by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care North West Coast, the Stroke Team developed and implemented an evidence-based pathway of psychological support, incorporating cross-service collaboration and training for staff. There was evidence for increased psychological support for patients by 6-months post-stroke following implementation of the pathway. Whilst ADOPTS was not powered to detect a change in mood scores between the intervention and control groups, there was a trend towards less depression in the intervention group.

4. Details of the impact

Across the world, 20 million people including 100,000 in the UK, will experience a stroke annually, of whom two-thirds will survive. One in three stroke survivors experience depression, particularly within the first year, and this increases cardiovascular-related morbidity and mortality, whilst also contributing to further NHS costs. Emotional difficulties directly and indirectly reduce quality-of-life for the patient by hindering post-stroke activities like taking medication, engaging in rehabilitation, maintaining social networks, and returning to work. Improving psychological care after stroke enhances patients’ health and quality-of-life and reduces burden on NHS services.

Impact on practice

The Stroke Team validated two screening tools, SODS and Yale-Brown Obsessive-Compulsive Scale, to reliably detect depression in patients following stroke. This validation has led to greater screening for depression amongst stroke survivors. These screening tools have now been implemented in clinical stroke pathways by numerous NHS stroke services including Cornwall, Dartford, Manchester, Lancashire, London and Glasgow. They are also used in the Netherlands and in Germany [D].

The Royal College of Physicians National Clinical Guideline for Stroke now recommend that “People with or at risk of depression or anxiety after stroke should be offered brief psychological interventions such as motivational interviewing…before considering antidepressant medication” [A] The Australian Clinical Guidelines for Stroke Management, which is also used in New Zealand, similarly recommend that “…psychological strategies (e.g. problem solving, motivational interviewing) may be used to prevent depression.” [B]

The Stroke Team’s research, as one of the only sources of evidence on motivational interviewing managing depression after stroke, is increasingly being used in practice and in guidelines. Motivational interviewing training and principles are now being widely implemented by and for stroke staff. NHS stroke services in Hereford, Cornwall, Manchester, Liverpool and Glasgow have implemented the training. Internationally it is found in online training by the Stroke Foundation in Australia, by stroke nurses in the Netherlands and in professional stroke education in the Heart and Stroke Foundation in Canada [D].

By adapting motivational interviewing from its original use in behaviour change to adjustment, the clinical impact was extended beyond stroke. For example, the Stroke Team were approached by HIV nurses in Atlanta, USA to provide training in motivational interviewing and guidance into incorporating motivational interviewing within their consultations. They have appreciated Stroke Team’s contribution, stating: “We and our study participants have truly benefitted from your expertise and input into our motivational adjustment intervention.” [J]

The ADOPTS trial has improved care through staff training and the organisation of services. An evidence-based pathway was developed that enhanced access to psychological support following stroke. The implementation of this pathway resulted in fostering collaborative working between multidisciplinary staff in stroke and generic mental health services, such as Improving Access to Psychological Therapies (IAPT), who were previously seen and felt to be working in silos. Working alongside these services to support the adoption of best practice the research resulted in an increased awareness, better networking and peer-support between the services which previously had minimal collaboration. These new collaborations stimulated the creation of innovative solutions for the provision of psychological support post-stroke. As one IAPT psychological therapist reported “I bumped into someone from the stroke team who I met through ADOPTS and we agreed to meet up and try to help each other.” [I] A stroke occupational therapist said: “I asked [IAPT] if they could come and talk about mental health, and obviously stroke-related, and how we could help patients.” [I] This innovative model has now been widely employed across north-west England, resulting in increased awareness and collaboration resulting in ADOPTS becoming a shortlisted finalist for the North West Coast Research and Innovation Awards.

Impact on practitioners

Training developed and implemented as part of the ADOPTS research, underpinned by the screening and interventions research, has increased the knowledge and skills among stroke and IAPT teams in identifying and managing psychological problems after stroke. The training improved stroke teams’ psychological awareness, IAPT teams’ stroke awareness and facilitated better psychological support for stroke survivors. Training was initially delivered to 152 staff across six NHS Trusts (Countess of Chester Hospital NHS Foundation Trust, East Lancashire Hospitals NHS Trust, Wirral University Teaching Hospital NHS Foundation Trust, Lancashire Teaching Hospitals NHS Trust, Cheshire and Wirral Partnership NHS Foundation Trust, Lancashire and South Cumbria NHS Foundation Trust). The training was well received by participants with one IAPT practitioner stating: “In the training, thinking about the way we communicate… I found [it] really useful… to adapt our therapies.” Some stroke services and psychological services have cascaded the training, extending its reach beyond the staff trained within ADOPTS. A stroke senior occupational therapist said, “I’ve incorporated it into in-service training for therapy staff, because things around psychological impact weren’t really there, and the feedback’s been really positive.” The training has since been endorsed by the UK Stroke Forum for Education and Training which ensures high quality and relevant training for stroke practitioners and is accessible across the UK. Following ADOPTS, we have been invited to teach on the IAPT course around long-term stroke recovery conditions. Training has also been delivered in areas beyond those included in the study in Cheshire and Wirral Partnership NHS Foundation Trust and North West Boroughs Healthcare NHS Foundation Trust, increasing the knowledge and skills of IAPT staff across the North West region.

Impact on patients

There have been national and international implementations of the work on mood screening, motivational interviewing therapy and antidepressants. This has resulted in substantial impacts on patient care and survival after stroke. Patients who received motivational interviewing in the Stroke Team’s research said they found it beneficial: “It helps me get things clearer in my mind… stops me sitting and worrying on things,” While another patient stated “It’s been worthwhile talking to someone… it’s been great just talking through things because you can talk with family but they don’t understand certain things.” [I]

Stroke and IAPT staff felt that stroke survivors, over 1500 per year across the services in which ADOPTS was implemented, benefited from the model. One stroke occupational therapist stated that “The training brought their [patients] psychological wellbeing to the forefront … they’re hopefully getting more holistic care.” This is corroborated by a stroke survivor who took part in the study and who benefited from an IAPT referral resulting in improved coping methods and an increase in confidence: “I ended up being referred to Mindsmatter, then attending several group sessions…I know the sessions were a benefit to me. They have helped me in developing my coping methods… I now have more confidence and acceptance of what I can achieve since my stroke.” [I]

Reducing the use of fluoxetine

The FOCUS study showed a 1.4% absolute excess risk of bone fractures with the prescription of fluoxetine. This has led to the antidepressant, which was commonly used to manage post stroke depression, being prescribed less. The study has been cited in American and Canadian clinical guidelines for stroke management to guide practitioners on the use of antidepressants after stroke [F, G]. The guidelines state that the antidepressant fluoxetine does not have an effect on functional recovery. The use of the antidepressant fluoxetine is now increasingly avoided due to evidence from the Stroke Team’s research showing its use increases the risk of adverse effects and alternative antidepressants are now considered in the first instance [H].

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