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- City, University of London
- 3 - Allied Health Professions, Dentistry, Nursing and Pharmacy
- Submitting institution
- City, University of London
- 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
1. Summary of the impact
Over 300,000 people in the UK have language impairment after stroke (aphasia), a figure that is rising with the aging population. Studies undertaken in the Centre for Language and Communication Science Research at City, University of London have made a real difference to the lives of people with aphasia. Our patient-focused outcome measures reveal the impact of aphasia on people’s lives and help clinicians choose interventions to improve quality of life. They are advocated as gold standards for use in all aphasia trials. The team’s novel intervention studies employ technology-enhanced aphasia treatments that significantly improve functional communication and recover previously lost language activities, with findings that are changing practice, both in the UK and internationally.
2. Underpinning research
Every year, 100,000 people in the UK have a stroke and one third of these individuals will acquire aphasia. Stroke survivors with aphasia have worse rehabilitation outcomes than those with other effects but no aphasia, resulting in devastating consequences for quality of life and mental health. Our research aims to address this inequality.
Outcome measures
It is a major challenge to capture the impact of aphasia on people’s lives in order to target rehabilitation more effectively. People with aphasia are typically excluded from stroke studies because they have been considered unable to complete outcome measures. The outcomes research, led by Hilari since 2003, has shown how training interviewers to help people with aphasia understand questions and provide responses, alongside adaptations to the format of outcome measures (such as fewer items per page, key words in bold), can enable people with aphasia to self-report on measures of communication, wellbeing and quality of life. Hilari and her team have developed and/or validated novel outcome measures including the Stroke Specific Social Network Scale and the Scenario Test-UK that can be used to assess the outcomes of even those with severe aphasia. A key contribution has been the Stroke and Aphasia Quality of Life scale, (SAQOL-39g), a quality of life tool specifically tested in both people with aphasia and other stroke survivors so that it can be used as a key outcome in stroke services and stroke outcome research [3.1].
The outcomes research has also generated rich evidence that factors such as emotional distress/depression, severity of aphasia, communication disability, activity limitations and diminishing social networks need to be addressed to improve quality of life [3.2]. Studies have also revealed the status of current clinical practice in relation to quality of life in aphasia [3.3]. These findings subsequently informed our aphasia intervention research.
Intervention research
City has been conducting aphasia intervention research for over 25 years led by Marshall, whose contribution to improving the lives of people with aphasia was recognised by the award of an OBE in 2018. Much of our current intervention research grew from an innovative interdisciplinary collaboration between the Centre for Language and Communication Science Research and the Centre for Human Computer Interaction Design, bringing together expertise in aphasia intervention and computer science. The resulting research explored therapeutic uses of digital technologies to benefit people with aphasia. The CommuniCATE project developed new treatments for reading, writing and conversation that repurpose mainstream technologies, such as voice recognition software. Controlled group trials showed that these technology-enhanced treatments can restore functional/ real-life communication activities in aphasia [3.4], and that aphasia therapy can be delivered remotely via video conferencing technologies, with significant benefits for word production [3.5].
The team also developed EVA Park, the first multiuser virtual reality platform designed for people with aphasia. This enables people with aphasia to meet on-line for communication treatments and social support. Our research demonstrated that aphasia therapies delivered via EVA Park can enhance functional communication and improve specific language skills, such as word retrieval [3.6].
3. References to the research
Hilari K, Lamping DL, Smith SC, Northcott S, Lamb A, Marshall J. Psychometric properties of the Stroke and Aphasia Quality of Life Scale (SAQOL-39) in a generic stroke population. Clinical Rehabilitation. 2009;23(6):544-57. https://doi.org/10.1177/0269215508101729.
Hilari K, Needle JJ, Harrison KL. What are the important factors in health-related quality of life for people with aphasia? A systematic review. Archives of Physical Medicine and Rehabilitation. 2012;93(1):S86-95. https://doi.org/10.1016/j.apmr.2011.05.028.
Hilari K, Klippi A, Constantinidou F, Horton S, Penn C, Raymer A, Wallace S, Zemva N, Worrall L. An international perspective on quality of life in aphasia: A survey of clinician views and practices from sixteen countries. Folia Phoniatrica et Logopaedica. 2015;67(3):119-30. https://doi.org/10.1159/000434748
Marshall J, Caute A, Chadd K, Cruice M, Monnelly K, Wilson S, Woolf C. Technology‐enhanced writing therapy for people with aphasia: results of a quasi‐randomized waitlist controlled study. International Journal of Language & Communication Disorders. 2019;54(2):203-20.. https://doi.org/10.1111/1460-6984.12391
Woolf C, Caute A, Haigh Z, Galliers J, Wilson S, Kessie A, Hirani S, Hegarty B, Marshall J. A comparison of remote therapy, face to face therapy and an attention control intervention for people with aphasia: a quasi-randomised controlled feasibility study. Clinical Rehabilitation. 2016;30(4):359-73. https://doi.org/10.1177/0269215515582074
Marshall J, Booth T, Devane N, Galliers J, Greenwood H, Hilari K, Talbot R, Wilson S, Woolf C. Evaluating the benefits of aphasia intervention delivered in virtual reality: results of a quasi-randomised study. PLOS ONE. 2016;11(8):e0160381. https://doi.org/10.1371/journal.pone.0160381
All outputs were published in prestigious academic journals that apply a rigorous peer-review process prior to acceptance of papers. The outputs were supported by grants from: the Health Foundation (“Assessing health-related quality of life after stroke”, Hilari PI, 2004-2008, GBP134,000); Barts Charity (“Enhancing communication in aphasia through technology”, Marshall/Woolf joint PIs, 2014-2017, GBP415,785); Bupa Foundation (“A Pilot Investigation of Aphasia Therapy Delivered via Internet Video Conferencing Technology”, Marshall PI, 2012-2013, GBP19,926); The Tavistock Trust for Aphasia “Remote Aphasia Therapy: A Feasibility Study”, Marshall PI, 2012-2013, GBP53,263; and The Stroke Association, “Evaluating the effects of a virtual communication environment for people with aphasia”, Marshall PI, 2012-2016, GBP204,898.
4. Details of the impact
Impact of Outcomes research
The evidence generated by Hilari and her team has contributed to a paradigm shift in aphasia rehabilitation. Service providers and clinicians are direct beneficiaries of the research with a resulting impact on people with aphasia. Speech and language therapists are now increasingly addressing quality of life in their rehabilitation; in an international survey, the most commonly used measure to guide clinical practice was the SAQOL-39g [3.3]. The underpinning research has had an impact on National Clinical Guidelines; the Australian Aphasia Rehabilitation Best Practice Statement 5 “Providing Intervention” states that rehabilitation should address the impact of aphasia on quality of life and cite our work as the highest level of evidence [5.1] and one of our systematic reviews on diminishing social networks after stroke and links to depression has been cited in a NICE surveillance review as key evidence for the need to update the Stroke Rehabilitation Guideline, CG 162 [5.2].
Two of our tools, the SAQOL-39g and the Scenario Test-UK, are recommended in the international ROMA consensus statement, and these tools now comprise two of the four essential measures included in the Core Outcome Set (COS) for aphasia, which is endorsed by the Collaboration of Aphasia Trialists and the internationally respected COMET Initiative [5.3]. Of all measures evaluated in the aphasia COS, the SAQOL-39g had the highest selection rate (96% compared to 74-83%). A systematic review by Neumann et al. (2019) found that the SAQOL-39g is the most frequently used quality of life measure in aphasia research. The impact the SAQOL-39g has had on clinical practice is evidenced by the fact that it is validated and currently available for use in 19 different languages [5.4].
The team has developed a bespoke online platform, City Access Resources for Aphasia (CARA), to make the SAQOL-39g and other resources developed at City available to clinicians. CARA officially launched in May 2019 and now has more than 2,475 users from across the world, including Europe, Asia, United States, Canada and Australia. The SAQOL-39g, in particular, has been accessed for use 1,343 times. Testimonials from clinicians in the UK and abroad have highlighted how use of the SAQOL-39g has transformed their practice. This has included facilitating collaborative goal setting for patients with aphasia and their families, being used as the core outcome measure across the stroke rehabilitation team and providing evidence for increased therapy that improves rehabilitation of those with aphasia [5.5].
Impact of Intervention research
Our intervention research, led by Marshall, has made a significant contribution to the aphasia therapy evidence base, which in turn guides treatment selection by practising therapists. One study is included in the most recent Cochrane review of speech and language therapy for aphasia [5.6] and there are further citations in international therapy evidence tables, such as Speech Bite (Australia) and Speech Pathology Data Base for Best Interventions and Treatment Efficacy (USA).
Patient benefits have been promoted via extensive training and outreach activities. Over 450 qualified speech and language therapists have been trained in the CommuniCATE treatments, including groups (n = 40) from USA (2015) and Australia (2018). A further 50 speech and language therapy students have been trained through placement opportunities, with a profound impact on their learning and subsequent practice. Manuals for our CommuniCATE and remote treatment approaches are available on our CARA website.
Since the project inception in 2014, at least 200 people with aphasia have directly benefited from the CommuniCATE therapies, delivered by City, the NHS and Australian clinics. Significant improvements have been achieved for those receiving treatment on measures of everyday reading and writing. Participants also report transformative benefits, such as being able to write in full sentences again and post personal stories on the internet [5.7].
EVA Park has been used at City to deliver therapy to 60 people with aphasia, using interventions that target language, communication and social support. Benefits have been demonstrated on formal measures and in the reports of users [5.8]. At least 200 service providers have benefited from practitioner EVA Park training. Forty-six aphasia services, including users from the USA, Australia, Spain and Bermuda, have been given access to EVA Park. All therapists have been trained in its use and provided with EVA Park treatment resources. To date, 427 user avatars have been created in EVA Park and over 5000 hours of therapy and support have been delivered on the platform. Feedback from service providers and recipients report important and novel benefits [5.9].
Online videos about EVA Park, which describe the intervention and its benefits from the perspective of therapists and those with aphasia, have attracted almost 6,000 views [5.10]. EVA Park has been recognised by the 2015 Tech4Good people’s award, which was based on a popular mandate, and by its 2016 nomination as one of the world’s 100 most inspiring uses of technology to drive social change (Nominet Trust). The EVA Park and CommuniCATE team was named as one of the 100 Nation’s Lifesavers, during the UK Universities MadeatUni Campaign. Since the outbreak of the COVID-19 pandemic in the UK, digital technologies have been at the forefront for delivering primary care. The RCSLT Telehealth Guidance issued in response to the pandemic cites our research as part of the evidence base supporting the virtual delivery of speech and language therapy services [5.11].
5. Sources to corroborate the impact
The Australian Aphasia Rehabilitation Best Practice, Statement 5, p19. (Available from http://www.aphasiapathway.com.au/flux-content/aarp/pdf/2014-COMPREHENSIVE-FINAL-01-10-2014-1.pdf accessed 19 March 2021).
NICE Surveillance Review for CG162 the Stroke Rehabilitation Guideline. Appendix A: Summary of evidence from surveillance. p15 and reference 33. (Available from appendix-a-summary-of-evidence-from-surveillance-pdf-6723786638 (nice.org.uk) accessed 19 March 2021).
Endorsements by the Collaboration of Aphasia Triallists (CATs) and the COMET initiative of the Research Outcome Measurement in Aphasia (ROMA) Core Outcome Set (COS).
City Access Resources for Aphasia (CARA) web page on SAQOL-39g translations.
Testimonials from clinicians supporting the use of SAQOL-39g, specifically: facilitating collaborative goal setting in patients with aphasia and their families; as the core outcome measure across the stroke rehabilitation team; and the use of SAQOL-39g results in benefits for patients with aphasia.
Brady MC, Kelly H, Godwin J, Enderby P, Campbell P. (2016) Speech and language therapy for aphasia following stroke. Cochrane Database of Systematic Reviews, Issue 6. Art. No.: CD000425. https://doi.org/10.1002/14651858.CD000425.pub4
CommuniCATE testimonials; blog posts by patients from the ComminiCATE Clinic.
Amaya A, Woolf C, Devane N, Galliers J, Talbot R, Wilson S, & Marshall J (2018). Receiving aphasia intervention in a virtual environment: the participants’ perspective. Aphasiology, 32(5), 538-558. https://doi.org/10.1080/02687038.2018.1431831
Testimonials for EVA Park from a charity funder (The Stroke Association), patient/carer and therapist.
Video testimonials for EVA Park describing the intervention and its benefits. (Available from https://www.youtube.com/watch?v=ouF1Nwvo6js and https://www.youtube.com/watch?v=k8iJVRFSsxA accessed 19 March 2021).
The Royal College of Speech and Language Therapists Telehealth Guidance web page.
- Submitting institution
- City, University of London
- Unit of assessment
- 3 - Allied Health Professions, Dentistry, Nursing and Pharmacy
- Summary impact type
- Technological
- Is this case study continued from a case study submitted in 2014?
- No
1. Summary of the impact
Congenital colour vision deficiency affects approximately 2,638,258 males and 135,274 females in the UK. New grading scales for colour vision assessment, based on the use of a novel colour vision screener with 100% test efficiency followed by the Colour Assessment and Diagnosis (CAD) test, have been developed. The rapid colour vision screener ensures that only 6% of applicants require the full CAD test, greatly improving the efficiency of colour vision testing. These developments have decreased variability and enabled the introduction of safer and fairer pass/fail limits within visually-demanding and safety-critical occupations. The tests and associated grading scales have been adopted worldwide as an accurate and efficient system for colour vision assessment by transport authorities, government organisations and industry.
2. Underpinning research
The prevalence of congenital colour vision deficiency (CCVD) is approximately 8% for males and 0.4% for females. The severity of CCVD varies from near normal sensitivity to complete absence of colour vision. In addition, diseases of the eye and systemic diseases such as diabetes can cause acquired loss of colour vision, particularly in older subjects. Colour vision yields significant advantages in many visual tasks and, in some occupations, the normal processing and correct interpretation of colour signals is vital for safety [3.1; 3.2].
Colour vision assessment currently relies on conventional tests such as Ishihara plates and the Farnsworth Munsell D-15. Our research has demonstrated that these tests fail to isolate uniquely either Red/Green (RG) or Yellow/Blue (YB) colour signals and are not able to eliminate all other cues an applicant could use to pass the test [3.3]. In addition, these tests do not quantify reliably the severity of colour vision loss, and they fail to identify accurately the applicant’s class of colour vision or the presence of acquired loss [3.2].
In the largest study of its type, Barbur and colleagues examined the sensitivity and specificity of commonly used, conventional colour vision tests including the Farnsworth-Munsell D15, Ishihara plates, Holmes-Wright lanterns and the Nagel anomaloscope [3.3; 3.4]. In the study, 1,830 participants, (350 normal trichromats, 1,012 deuteranopes, 465 protanopes and 3 tritanopes), had a full colour vision assessment using the CAD test as well as conventional colour vision tests. None of the conventional tests came anywhere close to achieving 100% sensitivity and specificity with some tests and protocols passing as many as 55% of colour deficient subjects [3.4]. The best performing conventional test was the 38 plate Ishihara; with no errors allowed, almost all CCVD subjects failed, but 19.4% of normal trichromats also failed resulting in very poor specificity [3.4]. As a result of this research, and commissioned reports, which carried out a detailed analysis of the outcome of current practices within the Electrical Contractors Industry, the Police and Fire Services, the Maritime Coastguard Agency and the Defence Medical Services, the need to develop a rapid and accurate colour vision screener became apparent.
The CAD test, initially developed for research studies into colour vision, overcomes the limitations of conventional tests but the full RG and YB colour vision assessment takes up to 15 minutes to complete and the test runs on expensive, fully-calibrated visual displays limiting its availability. If screening for the presence of congenital or/and acquired colour deficiency could be carried out rapidly on home computers with high sensitivity and specificity, only approximately 6% of applicants tested would require a full colour vision assessment on advanced tests such as CAD [3.5]. A ‘two-step’ protocol based on screening followed by the CAD test therefore has many advantages, but requires the availability of an inexpensive and rapid screener with close to 100% test efficiency [3.5].
The development of the colour vision screener (CVS) test was based on important findings that have emerged from our research studies during the last decade: (i) the establishment of reliable upper-normal threshold limits as a function of age for both RG and YB colour vision [3.6]; (ii) accurate assessments of intra- and inter-subject variability [3.5]; (iii) the discovery of a large (approximately two-fold difference) in RG chromatic sensitivity between the least-affected deuteranopes and protanopes; (iv) the realisation that the least-sensitive normal trichromats and the least-affected deuteranopes with overlapping thresholds at the upper normal limit have mean thresholds that are well below and above the upper normal age limits, respectively [3.5]. These findings made it possible to produce a statistical model to optimise the parameters of the CVS test and to predict the expected sensitivity and specificity. The experimental findings confirm model predictions and reveal 100% CVS test efficiency [3.5].
In addition to the research studies needed to develop the screener, the large database of colour deficient subjects examined at City, University of London has enabled us to predict accurately the outcomes of the most important, multi-test protocols in current use [3.2; 3.4] and to demonstrate the advantages of the two-step protocol over current practices [3.5]. As a result of the two-step protocol, the assessment of colour vision becomes more accurate, more efficient and simpler to carry out. A single colour assessment test can be used to establish the applicant’s severity of colour vision loss, which can range from ‘supernormal’ (CV0) for the most stringent, colour-demanding tasks, to ‘severe colour deficiency’ (CV5), when R/G colour vision is either absent or extremely weak.
3. References to the research
Barbur JL, Rodriguez-Carmona, M., Hickey, J., Evans, S., Chorley, A. Analysis of European Colour Vision Certification Requirements for Air Traffic Control Officers. London, UK: CAA (UK) Report, CAP 1429; 2016. pp 1-76. http://publicapps.caa.co.uk/docs/33/CAP%201429%20OCT16.pdf
Barbur JL, Rodriguez-Carmona M. Colour vision requirements in visually demanding occupations. British medical bulletin. 2017;122(1):51-77. https://doi.org/10.1093/bmb/ldx007
Evans BE, Rodriguez‐Carmona M, Barbur JL. Color vision assessment‐1: Visual signals that affect the results of the Farnsworth D‐15 test. Color Research & Application. 2021;46(1):7-20. (First published 25 November 2020). https://doi.org/10.1002/col.22596
Rodriguez‐Carmona M, Evans BE, Barbur JL. Color vision assessment‐2: Color assessment outcomes using single and multi‐test protocols. Color Research & Application. 2021;46(1):21-32. (First published 30 November 2020). https://doi.org/10.1002/col.22598
Barbur JL, Rodriguez‐Carmona M, Evans BE. Color vision assessment‐3. An efficient, two‐step, color assessment protocol. Color Research & Application. 2021;46(1):33-45. (First published 25 November 2020). https://doi.org/10.1002/col.22599
Barbur, J. L. and Rodriguez-Carmona, M. Color vision changes in normal aging. In: Elliott, A. J., Fairchild, M. D. and Franklin, A. (Eds.), Handbook of Color Psychology. 2016. pp 180-196. Cambridge: Cambridge University Press. (Available from https://openaccess.city.ac.uk/id/eprint/12513/ accessed 21 March 2021)
All outputs were published in prestigious academic journals that apply a rigorous peer-review process prior to acceptance of papers. The outputs were supported by grants from: CAA (UK), ‘Minimum Colour Vision Requirements for Air Traffic Controllers’, Barbur PI, 2012-2015, GBP43,400; The Colt Foundation, ‘Assessing the severity of colour vision loss in occupational environments’, Barbur PI, 2012-2015, GBP107,979 and ‘Development and validation of a colour vision screener test for use in visually-demanding occupations and primary healthcare’, Barbur PI, 2017-2020, GBP87,497.
4. Details of the impact
Impact on Public Policy and Services
Our research has led to the development of the rapid CVS test and the establishment of new CV# grading scales for quantifying the severity of RG and YB colour vision loss. The CVS test and associated protocols based on the CAD test are highly reproducible. Their adoption internationally has led to reduced variability in colour vision assessment and safer working environments by eliminating those applicants with severe deficiency who passed conventional protocols. They have also resulted in greater fairness for those less severe applicants who failed conventional tests, but pass the protocols based on the CAD test and are therefore able to carry out colour-related, safety-critical tasks with the same accuracy as normal trichromats [3.2].
The three-year project ‘Analysis of European colour vision certification requirements for Air Traffic Control (ATC) officers’ led to a change in policy by the CAA (UK) with the adoption of the CV2 grade for operators [5.1]. In 2019, the European Aviation and Space Agency (EASA) decided to adopt the CAD test and the stricter CV1 grade for Air Traffic Controllers (ATC). Since then all EASA member states require ATC operators to have normal trichromatic colour vision [5.2]. Neither the Ishihara test nor the Nagel anomaloscope assess YB colour deficiency and so the CAD test has become the default standard for ATCs. The colour vision research carried out at City, University of London has therefore had an impact on all EU air travel with the CV1 grade colour vision requirements applying to all 17,000 ATC officers improving the safety for 1,106M air passengers per year (EuroStat, 2018) [5.3].
Our research has also led to a report on colour vision assessment commissioned by the UK Maritime and Coastguard Agency (MCA) [5.4]. This report has led to significant impact, both in the UK and abroad. MCA is responsible for legislation and guidance on maritime matters and provides safety certification to seafarers. The study analysed the statistical outcomes of colour vision testing protocols previously used by the MCA using the City data set, which at the time of the study included 1,363 participants. The report identified the CV2 grading scale as a safer, simpler to administer, less variable and fairer colour vision requirement for lookout officers [5.4]. In 2018, MCA changed its policy and practice by adopting the CV2 grade and establishing guidelines alongside setting up four authorised colour vision test centres in the UK equipped with the CAD test [5.5]. Following the introduction of the new protocol, the number of appeals and retests, which were common in the past, reduced significantly. The adoption of the CV2 grade for colour vision affects the safety of everyone using UK waters including approximately 120,000 vessels and 20,700,000 international passengers arriving at UK ports in 2019 according to UK Government statistics.
[Text removed for publication] [5.6].
The CAD test and new CV# grading scales have also been adopted by industry for occupations where colour vision is important. For example, the CV3 grade was adopted by the Joint Industry Board (JIB) in 2017 for electrical contractors [5.7]. Use of the CV3 grade triples the number of applicants with CCVD who meet the JIB requirements. Applicants with CCVD who pass at the CV3 limit are 3-times less severe in terms of their RG colour vision loss than the most severe applicants who pass the current protocol (Fig. 10b in [3.2]). This results in both fairer and safer access to the electrical professions. In addition, the CAD test and CV# grading scales also assess YB colour vision, which is essential for detection of acquired loss.
Impact on Commerce and the Economy
In addition to the impact on policy and practice, the CAD test has been made commercially available through City Occupational Ltd (COL). COL is a spinout company of City, University of London, which was established in August 2013 to develop, manufacture and distribute a number of tests for use in research, primary healthcare and visually demanding occupations. City, University of London licensed the Intellectual Property to COL and as a result, the company has developed and sold CAD systems to vision research institutes, universities, aviation authorities, eye clinics, defence medical centres, authorised medical examiners, vision scientists and optometrists worldwide [5.8]. For example, a multi-centre gene therapy trial for achromatopsia has chosen our colour vision tests, alongside other advanced vision tests underpinned by our research, as outcome measures [5.9].
[Text removed for publication]
5. Sources to corroborate the impact
UK CAA Policy Statement: Colour Vision in Air traffic Controllers. EU Class 3 ATCO Colour vision Policy V1.1. July 2017. p1. (Available from https://www.caa.co.uk/WorkArea/DownloadAsset.aspx?id=4294985496 accessed 20 March 2021)
EASA: Easy Access Rules for Air Traffic Controllers Licensing and Certification (Regulation (EU) 2015/340). December 2019. P208. (Available from https://www.easa.europa.eu/sites/default/files/dfu/Easy_Access_Rules_for_Air_Traffic_Controllers_Licensing_and_Certificatio....pdf accessed 20 March 2021)
Corroboration can be provided by the Secretary General of the International Academy of Aviation and Space Medicine who is also the former chief medical officer of the Civil Aviation Authority and International Civil Aviation Organisation.
Colour vision assessment for maritime navigational lookout: review for UK Maritime and Coastguard Agency’ (July 2015) (Available from https://www.gov.uk/government/publications/colour-vision-assessment-for-maritime-navigation-lookout accessed 20 March 2021)
UK Maritime and Coastguard Agency MSN 1886 (M+F): Includes Appointment of Approved Doctors and Medical and Eyesight Standards (December 2018). Pp5-6 and Annex B. (Available from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/876405/MIN_564.pdf accessed 20 March 2021)
[Text removed for publication]
Joint Industry Board Handbook 2017, Section 8 JIB Training Services, Appendix A, p198. (Available from https://www.jib.org.uk/documents/content/files/2017-Apprenticeship-Scheme.pdf accessed 21 March 2021)
[Text removed for publication].
Testimonial from AGTC confirming the use of colour vision and other Advanced Vision and Optometric Tests in gene therapy trials for achromatopsia.
- Submitting institution
- City, University of London
- 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
1. Summary of the impact
Autism affects 1 in 100 people in the UK. Autistic individuals are at an increased risk of violence, victimisation and abuse, so they are likely to encounter the criminal justice system. This case study outlines the impact of research showing that autistic children can be reliable witnesses and that Registered Intermediaries improve the performance of child witnesses. Police officers and advocates are now more aware of how to deal with autistic individuals and have evidence-based guidance and toolkits based on our research that improves the quality of interview evidence. The research has also provided the evidence-base to support the positive benefits of Registered Intermediaries in improving the volume, accuracy, and consistency of recall for child witnesses. This has helped the Registered Intermediary community join together with other criminal justice professionals in improving fair access to justice.
2. Underpinning research
Registered Intermediaries (RIs) are communication specialists who assist vulnerable witnesses, including autistic and non-autistic child witnesses, within the criminal justice system in England and Wales. RI requests have increased markedly from 2,165 in 2013/14 to a record high of 6,907 in 2019/20 (Ministry of Justice Witness Intermediary Scheme Annual Report, 2019/20). The largest increases in demand are for requests relating to children (up 12.7% in 2019/20 and comprising 69% of all requests), demonstrating increased awareness and importance of their role.
Professor Lucy Henry and her team have led on a body of research, funded by ESRC, looking at the effectiveness of RIs for child witnesses and the reliability of witness testimony in autistic children. The importance of this research was underlined by Newlove (2018), ‘A Voice for the Voiceless: The Victims’ Commissioner’s Review into the Provision of Registered Intermediaries for Children and Vulnerable Victims and Witnesses’, pp. 13-14): “ *existing literature on RIs is variable in terms of both scale and scope…. though there are also a limited but increasing number of intervention experiments in this field (see Collins, Harker & Antonopoulos 2017; Henry et al. 2017).*”
The research aims were twofold: firstly, assessing whether RIs improve the volume, accuracy, and consistency of evidence provided by children; and secondly, determining whether autistic child witnesses are as reliable as typically developing child witnesses of comparable age and ability. In the first empirical investigation of its kind, 6- to 11-year-old children (71 with an autism diagnosis, 201 who were typically developing, all with average-range intellectual abilities) viewed a staged mild crime event and subsequently took part in all stages of a ‘mock’ criminal investigation comprising: initial statements [3.1; 3.5]; investigative interviews [3.2]; identification line-ups [3.3; 3.4]; and cross-examinations (study completed and submitted to Applied Cognitive Psychology). A novel feature of the research was that a proportion of children were assisted throughout by fully trained, experienced RIs.
Key findings – typically developing child witnesses
For typical children, pre-interview assessment and subsequent assistance from RIs during investigative interviews (compared to best-practice police interviews) substantially increased the number of correct details recalled about the event, importantly, without increasing errors [3.2]. RI assistance also improved children’s ability to identify the two ‘perpetrators’ seen in video identification line-ups [3.3]. Finally, RI assistance helped children resist cross-examination challenges on false information posed by experienced barristers 11 months after the investigative interview (study completed and submitted to Applied Cognitive Psychology). Overall, RI assistance improved the volume, accuracy, and consistency of witness recall for typical children at all key stages of the mock criminal investigation.
Key findings – autistic child witnesses
At the initial statement phase, autistic children recalled fewer details than typical children, although their accounts were equally accurate [3.1] and coherent [3.5]. Importantly, the number of details recalled by autistic children was equivalent to typical children when both groups were assessed with more structured ‘full’ investigative interviews (best-practice police interviews, interviews with additional verbal prompts, interviews using a drawing technique to support recall) [3.2]. Further, when neither group was aided by an RI, autistic children did not make more errors than typical children at investigative interview [3.2]. When asked to identify mock perpetrators in video line-ups, autistic children performed largely as well as typically developing children [3.4]. In conclusion, autistic child witnesses were reliable; they recalled valuable forensic details and, in many respects, matched the performance of comparable typical children.
3. References to the research
Henry LA, Messer DJ, Wilcock R, Nash G, Kirke-Smith M, Hobson Z, Crane L. Do measures of memory, language, and attention predict eyewitness memory in children with and without autism?. Autism & Developmental Language Impairments. 2017;2:2396941517722139. https://doi.org/10.1177/2396941517722139
Henry LA, Crane L, Nash G, Hobson Z, Kirke-Smith M, Wilcock R. Verbal, visual, and intermediary support for child witnesses with autism during investigative interviews. Journal of Autism and Developmental Disorders. 2017;47(8):2348-62. https://doi.org/10.1007/s10803-017-3142-0
Wilcock R, Crane L, Hobson Z, Nash G, Kirke‐Smith M, Henry LA. Supporting child witnesses during identification lineups: Exploring the effectiveness of registered intermediaries. Applied cognitive psychology. 2018;32(3):367-75. https://doi.org/10.1002/acp.3412
Wilcock R, Crane L, Hobson Z, Nash G, Kirke-Smith M, Henry LA. Eyewitness identification in child witnesses on the autism spectrum. Research in autism spectrum disorders. 2019;66:101407. https://doi.org/10.1016/j.rasd.2019.05.007
Henry LA, Crane L, Fesser E, Harvey A, Palmer L, Wilcock R. The narrative coherence of witness transcripts in children on the autism spectrum. Research in developmental disabilities. 2020;96:103518. https://doi.org/10.1016/j.ridd.2019.103518
All outputs were published in prestigious academic journals that apply a rigorous peer-review process prior to acceptance of papers. The outputs were supported by an ESRC Standard Research Grant: Access to justice for children with autism spectrum disorders, January 14th 2013 - July 13th 2016. Principal Investigator: Lucy Henry. Funding value: GBP376,525. Grant numbers: ES/J020893/1; ES/J020893/2.
4. Details of the impact
Results from Professor Henry’s research have had an impact on key stakeholders in the Criminal Justice process, leading to fairer access to justice. Dame Joyce Plotnikoff has highlighted the importance of the underpinning research: “ I wish to commend this ground-breaking research. It provides the first empirical evidence demonstrating the benefits of intermediary involvement in the forensic interview of typically developing of children aged between 6 and 11. This has important implications for practice in this country and other jurisdictions with an interest in the intermediary special measure…. This research will therefore assist significantly in supporting intermediary applications for primary school age children” [5.1]. More generally, according to Newlove (2018), the findings have “ played a crucial role in refuting the early concerns surrounding the introduction of RIs” [5.2].
Impact has been achieved via changes in approach by three major groups: police officers/trainers; barristers; and Registered Intermediaries. The evidence shows that better quality witness testimony will result in fairer access to justice where children, both typical and autistic, are involved as witnesses. The team’s findings have also made an impact on government advice, with some of their research cited in a UK Parliamentary Office of Science and Technology (POST) research briefing on ‘Improving Witness Testimony’ [5.3].
Police officers/trainers
Working with the UK’s leading autism charity (National Autistic Society, NAS) and the Metropolitan Police Service, the team led by Henry, produced evidence-based guidelines for police officers on how to deal with witnesses and suspects with autism [5.4]. Published in April 2017 by the NAS, the guidelines were distributed to police forces widely across the UK, with 4,569 views as of September 2019 (figures obtained from the NAS). They are cited in the ‘College of Policing’s Authorised Professional Practice on mental health’ [5.4], cited in the ‘Learning the Lessons: Improving policing policy and practice’ publication [5.4], and promoted by the National Police Autism Association (who circulated them to UK police forces/services).
The team also organised and hosted three ‘Autism and Policing’ events to raise awareness among police officers and police trainers about autism and the role of Registered Intermediaries. These events were delivered to 450 police officers and police training staff (the majority of whom had over 10 years of experience) in November 2015, March 2016 and April 2019. Delegates came from six national UK police services, with most from the Metropolitan Police Service. Feedback obtained from 316 officers attending across the three events demonstrated marked increases in knowledge and awareness about autism and the role of Registered Intermediaries, plus greatly increased confidence about interviewing people with autism [5.5]. Substantial increases in confidence around requesting an RI were also recorded (2019 event). Importantly, almost all officers attending these events considered themselves ‘likely’ or ‘very likely’ to apply this new knowledge to their professional role, many of them suggesting that the training should be mandatory (e.g., “ *Brilliant training - it should be mandatory!*”; “ *This is vital for all officers and should be compulsory.*”) [5.5]. Of the eight Police Officers in total [out of 35] who had interviewed a victim, witness or suspect with autism and/or requested the use of an intermediary since the awareness event, three agreed to a telephone interview to obtain further details. These interviews, conducted ten months after the 2019 event, revealed they were all implementing their new knowledge (e.g. Officer 3: “ *From information presented at the awareness event, it became clear to me (from the behaviours exhibited by the suspect) that the individual may be on the [autism] spectrum. Information about how to interview someone with autism was very useful as well as the types of questions etc. that should be asked...*”) [5.6].
Barristers
The Advocate’s Gateway (TAG), is an independent body providing free access to high-quality, practical, evidence-based guidance (‘toolkits’) on questioning vulnerable witnesses and defendants. Together with other academics and professionals, Professor Henry’s team produced two TAG toolkits describing best practice for legal and other professionals when working with and interviewing autistic people [5.7]. Since publication in 2015-16, these toolkits have been downloaded well over 3000 times. Feedback on the toolkits from senior legal professionals has been overwhelmingly positive. For example, His Honour, Judge John Phillips (Director of the Judicial College) referred to the toolkits as “ very high-quality material drafted by well-known experts”, whilst Mr Justice Haddon-Cave referred to them as “ an extraordinarily valuable resource”.
Registered Intermediaries
Professor Henry’s research and subsequent links with Intermediaries for Justice, the professional organisation for RIs, has helped consolidate the growing RI profession. Intermediaries for Justice worked with the research team delivering three Autism and Policing awareness events (see earlier section) and organising and hosting two Continuing Professional Development conferences for RIs (May 2017 and May 2018). According to the former chair of Intermediaries for Justice (IfJ) and current RI trainer Jan Jones [5.8]: “ There is no doubt that hosting the [Autism and Policing] Awareness Days had a marked affect [sic] on the understanding of the RI role in the wider CJS [Criminal Justice System]. It has joined together the RI community with other CJS professionals and highlighted the importance of research which informs practice. It would not have happened without the original study, Access to Justice for Children with Autism.”
Findings from the team’s research have informed national advice set out in the latest edition (to be published by the Ministry of Justice) of ‘Achieving Best Evidence in Criminal Proceedings: Guidance on Interviewing Victims and Witnesses, and Guidance on using Special Measures’ [5.9]. This guidance will be disseminated to and accessed by all criminal justice professionals who come into contact with vulnerable witnesses, impacting directly on RIs, barristers and police officers. Further, a revised version of the statutory ‘Code of Practice for Victims of Crime’ was published in November 2020 by the Ministry of Justice. It states that if the police need to interview a victim, they must consider the Achieving Best Evidence advice, the need for a Registered Intermediary to help the victim to communicate their evidence effectively, and any disabilities or special needs the victim has.
The research has also been commended by Dr Kevin Smith, the National Vulnerable Witness Advisor (National Crime Agency) and lead author of the new edition of Achieving Best Evidence in Criminal Proceedings, as “ of enormous benefit in encouraging operational police officers to obtain the assistance of a Registered Intermediary” [5.9]. In fact, during 2019/20 the largest increases in RI requests were by the police, which had increased by 14.6% compared to the previous year to a record high of 5,832 (Ministry of Justice Witness Intermediary Scheme Annual Report, 2019/20). Senior intermediaries also note that our research “ has in part contributed to increased requests by criminal justice professionals to have the assistance of a Registered Intermediary when eliciting evidence from vulnerable individuals” [5.10].
Further, our research findings are now integral to a new training programme for RIs, overhauled by the Ministry of Justice in 2018. Two of our research papers [3.2; 3.3] are included on the official reading list [5.8], and, to date, over 80 new RIs have been trained under this programme (since July 2018 – the scheme was suspended between June and November 2020 due to the coronavirus pandemic). The research findings from the project form part of the discussions and reflections that new RIs have with trainers on their practice, and senior intermediaries describe them as “ informing good practice and so further developing the intermediary scheme ”, noting further that they “ underpin intermediary practice with sound research findings” [5.10].
Finally, the research team is involved with Intermediaries for Justice and City Law School in developing and delivering (since October 2019) a series of continuing professional development modules at City for RIs, to further consolidate the RI profession and ensure robust standards. Following a CPD session delivered on autism-informed practice (February 2020), one RI described the team’s jointly written NAS guide for police officers as readable, well-written and explains what officers need to know. Jan Jones, the former chair of Intermediaries for Justice and current RI trainer, has concluded, “ Professor Lucy Henry’s contribution has had a definite impact on the way that vulnerable witnesses have been assisted in the justice system.” [5.8].
5. Sources to corroborate the impact
Email from the co-author of ‘Intermediaries in the criminal justice system: Improving communication for vulnerable witnesses and defendants. Policy Press; 2015.
Newlove, 2018, ‘A Voice for the Voiceless: The Victims’ Commissioner’s Review into the Provision of Registered Intermediaries for Children and Vulnerable Victims and Witnesses’. p.13.
UK Parliamentary Office of Science and Technology research briefing on ‘Improving witness Testimony,’ POSTnote Number 607, July 2019.
The guidelines titled ‘Autism: a guide for police officers and staff’, published April 2017, have been cited in the College of Policing’s Authorised Professional Practice web pages and in ‘Learning the Lessons’, a magazine for ‘Improving policing policy and practice’.
Autism and Policing Events; summary of feedback for the three events: 2015; 2016; and 2019.
Report on delegate feedback 10 months post ‘Autism and Policing’ 2019 event.
Two autism guidance toolkits: The Advocate’s Gateway revised Toolkit 3 on ‘Planning to question someone with an autism spectrum disorder including Asperger syndrome’, The Advocate’s Gateway: London (published December 2016) and The Advocate’s Gateway Toolkit 15 on Witnesses and defendants with autism: Memory and sensory issues, The Advocate’s Gateway: London (published February 2015).
Testimonial from the former chair of Intermediaries for Justice and Registered Intermediary, dated 20th November 2020.
Supporting letter from a National Vulnerable Witness Advisor, National Crime Agency, outlining the importance of our research for operational police officers and in contributing to national guidance on vulnerable witnesses.
Supporting letter from the Chair, Intermediaries for Justice and dated 12th August 2019.
- Submitting institution
- City, University of London
- 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
1. Summary of the impact
Demographic trends in the UK population have placed an increasing burden on Hospital Eye Services (HES). Research conducted at City, University of London has demonstrated that community optometrists are able to provide specialist services that match care in hospital eye departments and that these services are clinically effective, cost-effective and associated with high levels of patient satisfaction. Our findings have influenced national ophthalmic service redesign through the commissioning of optometrist-delivered specialist services. In parallel, City has developed clinical management guidelines (CMGs) for common eye conditions that have been adopted in national eye care pathways and have been incorporated into clinical guidelines and decision support tools internationally.
2. Underpinning research
There is an escalating problem in the delivery of emergency and routine eye care services in the UK. For example, the number of patients attending emergency eye units in London is increasing by approximately 10% per year. Up to 20% of referrals to ophthalmology clinics are for suspected glaucoma, with an estimated annual cost of monitoring these patients of over GBP 22,000,000. There is an urgent need to manage the flow of patients between primary and secondary care and ensure that patients are seen by the most appropriate healthcare professional, in the most suitable setting, and in a timely manner, to minimise the likelihood of visual loss. There are several new models of community-based eye care, such as Minor Eye Conditions Services (MECS) and community-based Glaucoma Referral Filtering Services (GRFS) for suspect glaucoma, that have the potential to decrease demand on the HES by reducing unnecessary referrals.
Research led by academics at City, University of London ( Lawrenson and Edgar), in collaboration with health economists from the University of Manchester ( Sutton, Mason, and Forbes) has significantly strengthened the evidence-base for the clinical effectiveness and cost-effectiveness of MECS and GRFS and has shown that the schemes are well-received by all stakeholders.
The College of Optometrists-funded Enhanced Scheme Evaluation Project (ESEP), conducted in the period 2012-2016, evaluated models of community-based eye care services to assess their clinical effectiveness and cost-effectiveness. This mixed-methods study used a combination of evidence synthesis, which is a new method of systematic review designed for complex policy interventions, and a detailed case study methodology.
As part of this project, we published the first evidence synthesis on the effectiveness of enhanced (community) eye care services in the UK [3.1]. This widely cited realist synthesis found evidence that optometrists are able to work safely in defined areas of clinical practice while maintaining or improving the quality of outcomes for patients. Detailed case-study evaluations of MECS and GRFS have demonstrated clinical effectiveness, clinical safety, reduction in hospital attendances and waiting times, cost savings and high levels of patient satisfaction [3.2 – 3.4]. For example, compared to a companion area without the service, MECS led to a differential reduction in general practitioner (GP) referrals to hospital ophthalmology departments of 40-75% with a 14% reduction in unit costs and an associated shortening of waiting times [3.3]. Similarly, GRFS resulted in a decrease of 53% in the number of false positive glaucoma referrals, with a false negative rate of <1%. Reducing false positive referrals clearly benefits both the hospital and the patient and can be achieved without compromising clinical safety.
A body of research by Lawrenson over the past 10 years has led to the publication of systematic reviews in priority areas of eye care to inform decision-making and explore major gaps in the clinical evidence base for eye care This has included 10 Cochrane reviews and updates, and seven reviews published in ophthalmology and optometry journals. This research expertise, ( Lawrenson is co-ordinating editor for Cochrane Eyes and Vision), has been applied to the writing of systematic reviews [3.5] and conducting evidence syntheses for the development of clinical management guidelines (CMGs), which are effectively commissioned items of research synthesis [3.6]. CMGs are a key component of the clinical effectiveness of new models of community-based eye care; they have been shown to address clinical uncertainties and support community optometrists in the diagnosis and management of eye conditions that present most frequently in primary care.
3. References to the research
Baker H, Ratnarajan G, Harper RA, Edgar DF, Lawrenson JG. Effectiveness of UK optometric enhanced eye care services: a realist review of the literature. Ophthalmic Physiol Opt. 2016;36(5):545-57. https://doi.org/10.1111/opo.12312 .
Konstantakopoulou E, Edgar DF, Harper RA, Baker H, Sutton M, Janikoun S, Larkin G, Lawrenson JG. Evaluation of a minor eye conditions scheme delivered by community optometrists. BMJ Open. 2016;6(8):e011832. http://dx.doi.org/10.1136/bmjopen-2016-011832 .
Mason T, Jones C, Sutton M, Konstantakopoulou E, Edgar DF, Harper RA, Birch S, Lawrenson JG. Retrospective economic analysis of the transfer of services from hospitals to the community: an application to an enhanced eye care service. BMJ Open. 2017 Jul 1;7(7). http://dx.doi.org/10.1136/bmjopen-2016-014089
Forbes H, Sutton M, Edgar DF, Lawrenson J, Spencer AF, Fenerty C, Harper R. Impact of the Manchester Glaucoma Enhanced Referral scheme on NHS costs. BMJ Open Ophthalmol. 2019 Sep 1;4(1):e000278. http://dx.doi.org/10.1136/bmjophth-2019-000278
Evans JR, Lawrenson JG. Antioxidant vitamin and mineral supplements for slowing the progression of age-related macular degeneration. Cochrane Database Syst Rev. 2017 Jul 31;7(7):CD000254. doi: 10.1002/14651858.CD000254.pub4.
Clinical Management Guidelines (College of Optometrists) https://www.college-optometrists.org/guidance/clinical-management-guidelines.html
All papers were published in prestigious academic journals that apply a rigorous peer-review process prior to acceptance. The research that generated outputs 3.1 – 3.4 was supported by a research grant from the College of Optometrists: Enhanced Scheme Evaluation Project, 2012 - 2016. Principal Investigators: Lawrenson and Harper. Funding value: GBP 294,287.
4. Details of the impact
The research conducted as part of the ESEP has provided a solid evidence base for the clinical safety and cost-effectiveness of enhanced services provided by community optometrists. The outputs from the ESEP, and previous research by the City team investigating effectiveness and refinement of glaucoma referral schemes, have informed commissioning guidance from NHS England, the College of Optometrists and the Royal College of Ophthalmologists, and NHS Improvement [5.1]. As a result, these outputs have played a major role in building the business case for Local Optical Committees (LOCs) to influence the decisions of Clinical Commissioning Groups (CCGs) to adopt MECS and GRFS pathways. The director of commissioning strategy for South East London CCG has commented “ *The CCG and the City team have directly supported more than 20 CCGs to implement their own schemes, but know that the work that we did has become almost standard practice for the whole of the NHS, and has been cited as the exemplar model by the Royal National Institute of Blind People.*” [5.2].
Minor Eye Conditions Services
The percentage of LOC regions in England that operate a MECS has increased from 55% to 71% since 2015. Over the same period an additional 4,000 optometrists have undertaken MECS accreditation. The commissioning of MECS significantly impacts referral rates from primary to secondary care, reducing the 1.7 million first attendances at ophthalmology outpatient departments by at least 10%. This is the equivalent of 170,000 HES appointments, representing net savings of GBP5,500,000.
In 2017, the Royal National Institute of Blind People, in partnership with Specsavers, the largest chain of optical practices in the UK, hosted a series of policy roundtable discussions at which a range of experts including patients, health professionals and commissioners came together to explore how improving delivery in eye care services could help increase capacity. Research from the ESEP was used as evidence for the clinical effectiveness and cost-effectiveness of MECS [5.3]. In 2016, Specsavers announced that more than 2000 of its optometrist employees have successfully become accredited to offer MECS in England [5.4], a strategic decision underpinned by our research [5.5].
Community-based Glaucoma Referral Filtering Services
Our research has also demonstrated the clinical effectiveness and cost-effectiveness of glaucoma referral filtering services (GRFS) in reducing referrals and freeing capacity in glaucoma clinics. The NICE guideline committee for glaucoma, which included ESEP team member Fenerty, recommended that ‘people planning eye care services should consider commissioning referral-filtering services (for example, repeat measures, enhanced case-finding, or referral refinement) for chronic open angle glaucoma and related conditions’ [5.6]. Commissioning guidance has also noted “ Independent monitoring of patients with a diagnosis of glaucoma (which must be established by a consultant ophthalmologist) is permitted and encouraged by NICE for those optometrists and other HCPs with training, skills and experience to the level of the CoO [College of Optometrists] Professional Diploma in Glaucoma” [5.7]. The NICE recommendation was informed by the findings of ESEP and previous research on referral refinement by members of the City team.
Clinical Management Guidelines
Underpinned by research over the past 10 years in priority areas of eye care, Lawrenson and Buckley have been engaged by the College of Optometrists through academic consultancy to lead on the development of Clinical Management Guidelines (CMGs) for the diagnosis and management of a range of eye conditions that present with varying frequency in primary and first contact care. A comprehensive process of identifying and rating the quality of evidence on the management of over 60 conditions and making specific treatment recommendations underpins each guideline (updated biennially) [5.8]. The Commission for Human Medicines (CHM) used the CMGs in their consideration of the proposal to allow optometrists to train as Independent Prescribers. They were also instrumental in the decision by the CHM to recommend that suitably qualified optometrist independent prescribers could prescribe any licensed medicine (for conditions affecting the eye, and the tissues surrounding the eye, within their recognised area of expertise and competence). The CMGs therefore have significant ongoing impact because they continue to inform the content of the Common Final Assessment for Independent Prescribing, the accreditation assessment conducted by the College of Optometrists for entry into the specialist register of therapeutic prescribers [5.9]. There are now over 500 practising optometrist independent prescribers working in specialist hospital settings and in the community. The CMG pages account for 22% of all unique page views to the College of Optometrists’ website (2,284,305 unique page views to the website and 502,387 to CMG pages in the year 2018-19).
The CMGs are also written into the service specifications for MECS pathways by the Local Optical Committee Support Unit (LOCSU), the Northern Ireland Primary Eyecare Assessment and Referral Scheme (PEARS) and, more recently, the national service framework for COVID-19 Urgent Eyecare Services (CUES) [5.10]. CUES acted as urgent eye care community hubs during the coronavirus pandemic. The quality of the guidelines has been recognised, and they inform the management of eye conditions by optometrists and other primary healthcare professionals e.g. CMGs are referenced in BMJ Evidence and NICE Clinical Knowledge Summaries (for GPs) [5.11].
5. Sources to corroborate the impact
Commissioning Guidance informed by our research includes: “Transforming elective care services ophthalmology” from NHS England p48 (available from https://www.england.nhs.uk/wp-content/uploads/2019/01/ophthalmology-elective-care-handbook-v1.1.pdf accessed 19 March 2021); Ophthalmic Services Guidance: Primary Eye Care, Community Ophthalmology and General Ophthalmology from the College of Optometrists and the Royal College of Ophthalmologists p14 (available from https://www.college-optometrists.org/resourceLibrary/ophthalmic-services-guidance--primary-eye-care--community-ophthalmology-and-general-ophthalmology.html accessed 19 March 2021); and the Ophthalmology GIRFT Programme National Speciality Report, p 36 (available from https://gettingitrightfirsttime.co.uk/wp-content/uploads/2019/12/OphthalmologyReportGIRFT19P-FINAL.pdf accessed 19 March 2021).
Testimonial from the Director of Commissioning Strategy, South East London CCG
The State of the Nation Eye Health 2017: A Year in Review. p30 https://www.rnib.org.uk/sites/default/files/APDF%20The%20State%20of%20the%20Nation%20Eye%20Health%202017%20A%20Year%20in%20Review.pdf
Over 2000 Specsavers optometrists are now MECS-accredited, Optometry Today, 1st September 2016. (Available from https://www.aop.org.uk/ot/industry/high-street/2016/09/01/over-2000-specsavers-optoms-now-mecs-accredited accessed 19 March 2021).
Testimonial from the Director of Professional Services, Specsavers Optometrists.
Glaucoma: diagnosis and management. NICE Guideline 81. Methods, evidence and recommendations. October 2017. (Available from https://www.nice.org.uk/guidance/ng81/evidence/full-guideline-pdf-4660991389 accessed 19 March 2021).
The Way Forward Glaucoma Report (Royal College of Ophthalmologists). (Available from https://www.rcophth.ac.uk/standards-publications-research/the-way-forward/ accessed 19 March 2021)
College of Optometrists. Clinical Management Guidelines. (Available from https://www.college-optometrists.org/guidance/clinical-management-guidelines.html accessed 19 March 2021).
College of Optometrists. Independent Prescribing - the examination. (Available from https://www.college-optometrists.org/cpd-and-cet/training-and-qualifications/qualifying-as-an-independent-prescriber/the-examination.html accessed 19 March 2021).
Clinical Management Guidelines have been written into the service specification for MECS pathways by: the Local Optical Committee Support Unit (LOCSU), the Northern Ireland Primary Eyecare Assessment and Referral Scheme (PEARS) and the COVID-19 Urgent Eyecare Service (CUES) in England, Section 4.1 Service Standards (College of Optometrists)
References to Clinical Management Guidelines appear in BMJ Best Practice (Example available from https://bestpractice.bmj.com/topics/en-gb/963 accessed 19 March 2021) and NICE Clinical Knowledge Summaries such as those for infective conjunctivitis (available from https://cks.nice.org.uk/topics/conjunctivitis-infective/references/ accessed 19 March 2021), dry eye syndrome (available from https://cks.nice.org.uk/topics/dry-eye-syndrome/references/ accessed 19 March 2021) and blepharitis (available from https://cks.nice.org.uk/blepharitis#!supportingevidence accessed 19 March 2021).
- Submitting institution
- City, University of London
- 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
1. Summary of the impact
Ground-breaking research from the Centre for Maternal and Child Health at City, University of London has had a global impact on the adoption of Midwifery Units. Midwifery Units offer maternity care to women with straightforward pregnancies and have better outcomes, experiences and are more cost effective compared with Obstetric Units. Our research has led to a better understanding of the complex barriers and facilitators to implementation. A spin-off company, Midwifery Unit Network Ltd (MUNet), has been established that supports service providers in implementing evidence into practice, including developing a set of standards endorsed by NICE. The number of midwifery units in England increased by 51% between 2010 and 2019 from 114 to 173. The number of midwifery unit births has also increased to 14% of the total number of births (in 2016) saving the NHS £10M. Globally, midwifery units have now been established in four countries outside England with support from MUNet and are in development in five low- and middle-income countries.
2. Underpinning research
‘Too little too late’ and ‘too much too soon’ refer to harm that can arise from lack of access to care, especially for economically deprived or rural populations, or from excessive intervention. These twin problems have been identified as major challenges for global maternity care resulting in inequity and poorer quality outcomes The World Health Organisation has called for scaling-up of midwife-led services to improve quality of care while also reducing the burden on human and financial resources. Early cutting-edge research from City, University of London (City), was commissioned by the UK Department of Health to provide robust evidence on outcomes, costs and processes of care in different settings (the Birthplace in England Programme). Results demonstrated that, for low-risk women, giving birth in a midwifery unit was safer, cheaper, and associated with better experiences compared with obstetric units. These findings informed updated clinical guidelines from NICE, published in 2014, recommending that professionals provide information about the benefits of midwifery unit care to encourage uptake by pregnant women. NICE guidelines are referenced widely, but subsequent research by the team at City highlighted a range of implementation challenges for this recommendation, nationally and internationally, in terms of provision and uptake of midwifery units.
To understand and address this problem, the team from City, led by McCourt, have become sector leaders in implementation research into midwifery units, identifying opportunities and barriers to provision and components of quality. Key underpinning research has included:
A study employing ethnographic case studies of the organisation and management of Alongside Midwifery Units [3.1;3.2]. This research identified, for the first time, the key challenges to quality and safety, sustainability and scaling-up of this novel model of care, including professional tensions, resource conflicts, poor quality of information for women, training, management and staff deployment issues.
A mixed-methods study, which mapped patterns of midwifery unit provision in England following the updated NICE guidelines in 2014 and investigated factors influencing uptake. Mapping findings identified gaps in implementation, with limited provision in some areas, instability in provision and variable uptake [3.3]. A series of case studies identified a range of structural, organisational, cultural, and informational factors influencing this picture [3.4].
A case study of user experiences and cost-effectiveness of the first purpose-built urban Freestanding Midwifery Unit in England. Findings identified high levels of satisfaction and cost-effectiveness of this care model [3.5].
A NIHR doctoral fellowship ( Rocca-Ihenacho) supervised by Macfarlane & McCourt (2012-2016) also identified key ingredients contributing to the positive outcomes of Freestanding Midwifery Units and developed conceptual models to guide midwives and managers and to support service users’ choice [3.6].
The Birth Place Action Study (NIHR Knowledge Mobilisation Fellowship to Rocca-Ihenacho 2016-2019) built on this programme of work as the first study to explore implementation strategies for scaling-up use of midwifery units. Key outputs were the development of a set of evidence-based European Midwifery Unit Standards and accompanying self-assessment tool. These documents provide a practical framework to support service managers and practitioners when setting up a midwifery unit. They include a step-by-step guide on how to assess their midwifery unit and how to produce an implementation or improvement plan all underpinned by a research evidence base.
3. References to the research
McCourt C, Rance S, Rayment J, Sandall J. Organising safe and sustainable care in alongside midwifery units: Findings from an organisational ethnographic study. Midwifery. 2018;65:26-34. https://doi.org/10.1016/j.midw.2018.06.023
Rayment J, Rance S, McCourt C, Rm JS. Barriers to women's access to alongside midwifery units in England. Midwifery. 2019;77:78-85. https://doi.org/10.1016/j.midw.2019.06.010
Walsh D, Spiby H, Grigg CP, Dodwell M, McCourt C, Culley L, Bishop S, Wilkinson J, Coleby D, Pacanowski L, Thornton J. Mapping midwifery and obstetric units in England. Midwifery. 2018;56:9-16. http://dx.doi.org/10.1016/j.midw.2017.09.009
Walsh D, Spiby H, McCourt C, Grigg C, Coleby D, Bishop S, Scanlon M, Culley L, Wilkinson J, Pacanowski L, Thornton J. Factors influencing the utilisation of free-standing and alongside midwifery units in England: a qualitative research study. BMJ open. 2020;10(2). http://dx.doi.org/10.1136/bmjopen-2019-033895
Macfarlane AJ, Rocca-Ihenacho L, Turner LR. Survey of women׳ s experiences of care in a new freestanding midwifery unit in an inner city area of London, England: 2. Specific aspects of care. Midwifery. 2014;30(9):1009-20. https://doi.org/10.1016/j.midw.2014.03.013
Rocca‐Ihenacho L, Yuill C, McCourt C. Relationships and trust: Two key pillars of a well‐functioning freestanding midwifery unit. Birth. 2020;00:1-10. https://doi.org/10.1111/birt.12521
All outputs were published in prestigious academic journals that apply a rigorous peer-review process prior to acceptance of papers. The outputs were supported by four grants from NIHR: “An organisational study of Alongside Midwifery Units: a follow-on study from the Birthplace in England Programme”, 2010 - 2012. Principal Investigator: Christine McCourt. Funding value: £299,030. Grant number 10/1008/35; “Factors influencing the utilisation of free-standing and alongside midwifery units in England: A Mixed Methods Research Study”, 2015 - 2018. Co-Investigator from City, University of London: Christine McCourt, Funding Value: £477,227, Grant Number: 14/04/28; “Assessing the impact of a new birth centre on choice and outcome of maternity care in an inner city area” NIHR Research for Patient Benefit, 2008 - 2009. Principal Investigator: Alison Macfarlane. Funding value: £249,993 Grant number PB-PG-0107-12209; “How can NICE intrapartum guidelines recommendations on place of birth for women with uncomplicated pregnancies be implemented in practice?” Career Development Award, 2016 - 2019. Principal Investigators: Lucia Rocca-Ihenacho. Funding value: £ 286,271. Grant number KMRF-2015-04-001
4. Details of the impact
Our research has influenced a major shift from obstetric-led to midwife-led birth settings for low-risk women in the UK and internationally. The evidence base created by our research has been used in the design and development of a range of practical tools. These tools have supported change in national and global policy and the growth in numbers and quality of midwifery units in the UK and abroad. Between 2010 and 2016 the number of women who birthed in a midwifery unit in England rose from 5% to 14%, equating to an additional 58,492 midwifery unit births. A conservative estimate, based on the Birthplace in England Research Programme’s economic analysis (Schroeder et al., 2012), suggests that this represents a saving of approximately GBP10,000,000 to the NHS. The number of midwifery units in England increased from 114 in 2010 to 173 in 2019 and the number of maternity units without a midwifery unit decreased from 50% in 2010 to 20% in 2019. International change supports the increasing implementation of midwifery units worldwide.
Midwifery Unit Network (MUNet), was set up in 2015 as a community of practice to develop impact and is now a limited company. City staff were instrumental in the creation, launch and support of MUNet as a spin-off company and remain intrinsically linked through Rocca-Ihenacho (CEO and co-founder), Thaels (director), Batinelli (research advisor) and McCourt (associate). MUNet has created tools and training, underpinned by our research, aimed at expanding and improving the choice of maternity care offered to women. These include:
Midwifery Unit (MU) Standards: These evidence-based standards, informed by our research, define quality criteria for midwifery units and are aimed at improving quality of care and reducing variability of practice. The standards have been endorsed by the European Midwives Association and NICE, who state that they “ *accurately reflect recommendations in the NICE guidance on intrapartum care for healthy women and babies [CG190]. They also support statement 1 in the NICE quality standard for intrapartum care [QS105]*”. The standards are also supported by the International Confederation of Midwives and the European Board and College of Obstetrics and Gynaecology [5.1].
Midwifery Unit Standards Self-Assessment Tool: The self-assessment tool, launched in September 2019, allows midwifery units to benchmark their service against the MU Standards and develop improvement plans. The tool has been piloted in four midwifery units across Europe. Evaluation of the pilot data has demonstrated that by using the self-assessment tool, services were better able to produce structured improvement plans. These plans included high-impact actions such as environmental refurbishment, production of evidence-based clinical guidelines and pathways, information for service users and providers, professional buddy-schemes and timelines to evaluate progress and service effects [5.2].
Midwifery Unit Academy: MU Academy is the education and training arm of MUNet. It delivers e-learning modules and interactive workshops/courses for professionals and service managers worldwide. 795 professionals have attended these workshops and courses since 2017 and a further 477 e-learning modules have been completed. In 2020 alone, 500 places were purchased for Canadian professionals and 750 for UK midwives. The training has a direct impact on midwifery units through the professionals involved.
The tools produced by MUNet, informed by our research, continue to influence policy and provision in the UK. For example, the MU Standards have been used to ensure the new community birthing hubs provide the necessary ambience, equipment and space: “MU Net resources and training have helped to develop services across the North of England, supported leaders to develop new ways of working and new environments that women, birthing people and their families want. MU Net have been invaluable in developing service and system change” [5.3]. The MU Standards have also helped shape best practice in London; they have been written into a resource from the London Clinical Maternity Network and our research has been cited in an NHS Best Practice toolkit ‘Increasing the number of births at home and in midwifery led units ’ [5.4]. MUNet’s training resources have also been licensed by Trusts and Health Boards including Chelsea and Westminster, Wakefield, Grampian and Tayside, and bespoke training has been provided to Cheshire and Merseyside.
Our research, networking and training (through MUNet) has also had a profound impact across Europe leading to change in policy and legislation and increased numbers of midwifery units. In 2015, France implemented five pilot midwifery units. MUNet and academics at City collaborated with the French Midwifery Association to support stakeholder meetings and provide testimonial to the French Senate. The head of the French Midwifery Association, which represents 20,000 midwives and 498 maternity services, confirmed that new legislation was passed in the French Parliament on 14 December 2020, allowing the eight existing birth centres to continue their activity and planning for at least 12 more. The testimonial also notes that a multinational team including France, Belgium and Switzerland were translating the MU standards into French and that France were trialling the self-assessment toolkit. These developments have also been supported by the Vice-President of the French government’s Social Affairs Committee [5.5].
MUNet has collaborated with the Federation of Spanish Midwifery Associations, (FAME), an organisation that represents most of the midwifery associations in Spain and some 3033 midwives. The collaboration has led to policy changes that support the implementation of midwifery units and the MU standards and underpinning research have been used as evidence to support these changes. The autonomous region of Valencia has passed legislation in support of the implementation of midwifery units and Catalunya, which opened the first public service midwifery unit in 2017, is about to launch its second Alongside Midwifery Unit at Badalona in early 2021 [5.6].
There has been extensive engagement between MUNet and stakeholders across many other European countries including Italy, the Czech Republic, Bulgaria, Romania, the Netherlands, Portugal, Belgium and Malta. Training and consultation services provided by MUNet have not only improved the operation of existing midwifery units but supported the introduction of midwifery units in countries such as the Czech Republic. Testimonials from the head of the Department of Gynaecology and Obstetrics, Charles University and the chair of the Association of Birth Houses and Centers note direct impact on staff skills (less invasive approaches), processes (midwife-to-midwife coaching) and staff communication techniques [5.7].
Globally, the implementation of midwifery units has been facilitated by academics from City through online advisory meetings and use of the MU Standards as a planning tool, with support from MUNet or IMaGINE (a City-based GCRF-funded network). Senior stakeholders have been supported to explore implementation challenges and opportunities in low- and middle-income countries and to implement and evaluate pilot midwifery unit projects. A number of new midwifery units were opened in India as a pilot project supported by a collaboration involving MUNet, the WHO and the Health Ministry in India [5.8]. MUNet has collaborated with the Saudi Ministry of Health since 2018 leading to the creation of a stakeholder consultation group that works on the implementation of midwifery units. In 2020, approval was granted to initiate a midwifery unit consultation committee, which will formalise and regulate the opening of midwifery units in Saudi Arabia. Part of this project is the creation of Midwifery Unit Standards for Saudi, based on the European Midwifery Unit Standards created by MUNet and underpinned by our research [5.9]. Similarly, in Afghanistan, MUNet collaborated with the country’s Midwifery Association securing formal approval in 2020 to initiate a midwifery consultation committee, which will regulate midwifery units and create midwifery unit standards for Afghanistan, based on the European Midwifery Unit Standards [5.10]. In other countries such as Brazil the MU Standards have been translated into Portuguese, but their planned launch has been postponed to 2021 because of the coronavirus pandemic.
5. Sources to corroborate the impact
Midwifery Unit Standards 2018 and NICE endorsement statement of the Standards published 21 October 2019.
Report on the Midwifery Unit Self-Assessment Tool, January – July 2020.
Testimonial from the Chief Midwife for North East & Yorkshire, NHS England.
NHS London Clinical Networks document ‘Increasing births in midwifery led settings; A Best Practice Resource by London Maternity Clinical Network Draft V.11 07.12.20’ and NHS London Strategic Clinical Networks document ‘Increasing the number of births at home and in midwifery led units: A best practice toolkit’.
Testimonial from the president of the French Association of Midwives.
Testimonial from the president of the Federation of Midwifery Associations, Spain.
Testimonials from the head of the Department of Gynaecology and Obstetrics, Charles University, Czech Republic and the chair of the Association of Birth Houses and Centers Czech Republic.
Testimonial from the Department for Maternal, Newborn, Child and Adolescent Health and Ageing, World Health Organisation, Geneva Switzerland.
Testimonial from the Director of Midwifery, General Department of Nursing and Midwifery Affairs, Ministry of Health, Saudi Arabia.
Testimonial from the president of the Afghan Midwives Association, Afghanistan.
- Submitting institution
- City, University of London
- 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?
- Yes
1. Summary of the impact
Around 410,000 vulnerable older people live in care homes in the UK relying on them for their everyday needs and quality of life. It has long been recognised that there is variability and inequality in provision. Impact from our research addresses these issues. Co-created under the leadership of Meyer at City, University of London, My Home Life is a collaborative initiative that promotes culture change, better practices, and improved standards in care homes. Since 2014, My Home Life has raised standards through the transfer of knowledge and research, contributing to improved quality of life for care home residents. It has achieved this by participating in the development of CQC guidelines for inspecting and rating providers that are now used for approximately 11,300 care homes, contributing to at least four independent policy reports, and providing training to 1,776 individual care home managers in England, Scotland, Northern Ireland, Wales, Australia and Germany through its Leadership Support Programme.
2. Underpinning research
Care homes provide residential and healthcare services to vulnerable older people who have complex needs. The Alzheimer’s Society estimates that 70% of residents have dementia or memory problems in addition to disability, frailty, and other chronic health conditions. The care home sector suffers from structural problems including insecure and low paid work, lack of staff training, and staffing shortages, that highlight the difficulty of improving the quality of care. In addition, traditional quality improvement knowledge and strategies cannot be transferred from healthcare to the care home sector without being adapted to the context within which they operate, including the needs of staff and residents. The My Home Life (MHL) initiative translates knowledge and research evidence into leadership programmes that support and empower managers to improve quality of life for residents in care homes.
Research led by Meyer successfully highlighted the factors that enhance quality improvement in care homes such as evidence-based practice [3.1], quality of life indicators to measure quality improvement [3.2], better partnership working between health and social care [3.3], and relational leadership to enable better voice, choice and control for residents [3.4], among others. Results from our research informed the co-creation and mixed methods evaluation of a successful and on-going leadership programme for care home managers, generating new findings about the care home sector [3.5]. Meyer’s research and leadership has informed two international consensus studies on measuring quality of life in care homes; it informed a project to develop a consensus on quality-of-life indicators in Europe [3.2] and the ongoing WE-THRIVE global research initiative to develop measurement infrastructure that supports improved quality of life for those in long term care.
My Home Life, through Meyer’s leadership, has developed a reputation for expertise in undertaking research into care homes. As an example, Meyer was an invited partner in a realist evaluation (PEACH Study) to explore how Quality Improvement Collaboratives (QICs) work to improve healthcare in care homes. Data were generated from a multiple case study design across four sites and 29 care homes to explain how NHS and care home staff work together to design and implement improvement. The findings from PEACH were then compared with the findings of other leading QICs to improve care in care homes (five in the UK and one in the Netherlands) [3.6]. Cross comparative findings challenge taking a model (QIC) that works in the NHS and transplanting it to care homes without revision. Overall, five lessons were learnt that are specific to care homes: (i) plan for the resources needed to support collaborative teams with collecting, processing, and interpreting data; (ii) create encouraging and safe working environments to help collaborative team members feel valued; (iii) recruit collaborative teams, QIC leads, and facilitators who have established relationships with care homes; (iv) regularly check project ideas are aligned with team members’ job roles, responsibilities, and priorities; and (v) accept that planned activities may need adapting as the project progresses. Researchers concluded that improvement tools and techniques cannot to be taken “off-the-shelf” and applied without adaptation to the local context. The research therefore identified and began addressing a gap in the existing quality improvement and care home evidence base and proposed collaborative projects in care homes as the key method for learning and improvement.
3. References to the research
National Care Homes Research & Development Forum (2007). My Home Life: Quality of life in care homes – Literature review, commissioned by Help the Aged, London.
European Centre for Social Welfare Policy and Research (Coordinator) (2010) Measuring Progress: Indicators for Care Homes. Vienna, Bad Schallerbach, Utrecht, London, Dortmund, Essen, Düsseldorf: European Centre, E-Qalin, Vilans, City University, Uni Dortmund, MDS, MGEPA NRW.
British Geriatrics Society (2011). Quest for Quality: Inquiry into the quality of healthcare support for older people in care homes: A call for leadership, partnership and quality improvement. (Available from https://www.bgs.org.uk/blog/a-quest-for-quality-in-care-homes accessed 11 March 21)
Owen T and Meyer J (2012). My Home Life: Promoting quality of life in care homes. Joseph Rowntree Foundation, York ISBN: 978 1 85935 937 2. (Available from https://www.jrf.org.uk/report/my-home-life-promoting-quality-life-care-homes, accessed 11 March 2021)
Dewar B, Barrie K, Sharp C, Meyer J. Implementation of a complex intervention to support leadership development in nursing homes: a multimethod participatory study. Journal of Applied Gerontology. 2019;38(7):931-58. https://doi.org/10.1177/0733464817705957
Devi R, Martin G, Banerjee J, Butler L, Pattison T, Cruickshank L, Maries-Tillott C, Wilson T, Damery S, Meyer J, Poot A. Improving the quality of care in care homes using the quality improvement collaborative approach: Lessons learnt from six projects conducted in the UK and the Netherlands. International Journal of Environmental Research and Public Health. 2020:7601. https://doi.org/10.3390/ijerph17207601
The research reports and papers have either been published in peer reviewed journals or have been commissioned research reports from major government and charitable funders. For example, Help the Aged (GBP25,000) funded the evidence synthesis for best practice in care homes (Vision: 2005-2007) [3.1]. Bupa Giving (GBP279,500) shared the best practice findings with around 18,000 care homes, using a range of creative resources (Dissemination: 2007-2009). The next phase (Implementation: 2009 to 2013) was funded from several sources (Joseph Rowntree Foundation, Department of Health, Local Authorities and City Bridge Trust; over GBP2,000,000 in total) to support care home managers progress quality improvement, together with The European Commission, DG Employment and Consumer Protection who co-financed a large European project within the framework of the PROGRESS Programme [3.2]. Since then, the research has focused on partnership working with care homes (Sustainability: 2014-to date).
4. Details of the impact
Research led by Meyer has had international impact on best practice in care homes. Results from our research have been translated into an international social movement for quality improvement known as My Home Life, which has now spread across England, Northern Ireland, Scotland, Wales, Australia, and Germany. Since 2013, MHL has been a driving force in setting standards and supporting quality improvement in care homes.
Setting best standards and promoting relationship-centred care
MHL’s evidence-informed working methods have repeatedly been recognised as best practice by the Care Quality Commission (CQC), the independent regulator of all health and social care services in England. In 2014, MHL helped to inform the key lines of enquiry (KLOEs) in the consultation on their provider handbooks [5.1]. Additionally, MHL provided feedback on the draft provider handbooks as an independent contributor [5.2]. The final versions, published by CQC, set out the guidelines for inspecting and rating providers of health and adult social care services. These standards are now used to assess 11,300 care homes in England supporting more than 400,000 residents. Since the publication of these guidelines there have been several CQC inspection reports that identify MHL as a positive support mechanism for care home managers. In one report, CQC stated “ The programme [MHL] provides a good support mechanism for managers to reflect on [their] own performance and leadership skills” and a second report noted “ *The Deputy Manager was enrolled on My Home Life, which was an initiative run by the local authority to promote more person-centred practice in care homes. We saw examples of how this had inspired more creative practice.*” [5.3].
In tandem with the impact achieved via CQC, Meyer’s research and/or MHL have directly influenced reports from charities and thinks tanks such as: the Joseph Rowntree Foundation Care Home inquiry; The Demos Commission on Residential Care; HSJ/Serco Commission on Hospital Care for Frail Older People; and “A place to Call Home?” review by the Older People’s Commissioner for Wales [5.4]. All reports reinforce the key MHL message regarding relationship-centred care. As a result of increased awareness, MHL is being endorsed and adopted as a standard in Wales [5.4] and Northern Ireland [5.5]. Furthermore, MHL has been cited in Parliament as an example to advance the case for better standards; Paul Burstow, MP for Sutton and Cheam and Minister of State in the Department of Health at the time, commented “ Rather than care that is just about transactions, the [My Home Life] programme is about changing the nature of the relationship between those who provide care and those who receive it” [5.6].
Supporting quality improvement and practice development
MHL has had a major impact on quality improvement through its leadership support initiatives. Data from a UK telephone survey conducted by MHL in 2017 of 221 randomly selected care home managers suggested that MHL had influenced practice in 1,872 care homes, affecting the lives of approximately 56,000 residents in the UK [5.7]. Since August 2013, approximately 1,119 care home managers have participated the MHL Leadership Support programme in England, sharing best practice with staff and improving the quality of life for 33,500 residents. The MHL NW London CCG Collaborative provides further evidence of positive impact; in 2018 alone, care homes involved in MHL across NW London reported a 14% reduction in ambulance callouts, 16% in ambulance conveyances, 9% in A&E attendances and 5% in non-elective admissions. In contrast care homes not involved in MHL reported increases across the board [5.8]. Positive change was demonstrated following the leadership training provision and 93% of participants from the NW London Leadership Support programme reported increases in their ability to shift leadership style [5.8]. The Health and Social Care Workforce lead North West London CCG has stated “ *Participation in My Home Life Leadership Programme has contributed to improved leadership of the Mangers … linked to systemic changes in individual homes. The improvement of professional relationships extended beyond the care homes, into the wider health and social care community.*” [5.8].
Informed by findings from all its underpinning and ongoing research, MHL continues to support the leadership development of care home managers to take forward quality improvement in countries across the UK, Germany and Australia expanding its reach globally. For example, in a study unconnected to MHL that explored what governments could do to encourage care providers to improve quality of residential care for older people in England and Australia, the value of MHL was highlighted on more than one occasion: “ In England, managers had particular praise for the My Home Life programme … which promotes relationship-centred quality by bringing managers together for training events and support … some people thought the programme should be funded by government.” [5.9].
Significant impact has been achieved by MHL globally underpinned by the research of Meyer who was awarded a CBE in 2015 for services to nursing and older people and in 2017, celebrated as one of 150 Leading Women (1868–2018) by University of London in recognition of the impact MHL has had on both practice and research [5.10].
5. Sources to corroborate the impact
CQC Overview to the provider handbooks for adult social care. Appendix 2: Adult Social Care Research Material which informed KLOEs and characteristics, p15.
CQC Consultation response: Provider handbooks for adult social care. Appendix A: Organisations that submitted responses to the consultation across all sectors.
CQC Inspection Reports: Swan Care Residential Home 30 May 2014 and St Georges Nursing Home 26 September 2018
Reports from charities and think thanks that have been influenced by My Home Life including: (a) JRF John Kennedy’s Care Home Inquiry; (b) Demos: The commission on residential care; (c) HSJ/Serco Commission on Hospital Care for Frail Older People (2015); (d) A Place to Call Home? A review into the quality of life and care of older people living in care homes in Wales.
Actions taken forward by the Northern Ireland Department of Health, 27 June 2018 (Available from https://www.health-ni.gov.uk/news/department-health-details-series-measures-care-home-standards accessed 18 March 2021)
Hansard reports from 1 May and 16 July 2014 reporting comments made by Paul Burstow, MP then Minister of State in the Department of Health. (Available from https://hansard.parliament.uk/commons/2014-05 01/debates/14050125000001/CareHomes and https://hansard.parliament.uk/Commons/2014-07-16/debates/14071651000001/SpecialMeasuresRegime accessed 18 March 2021)
My Home Life Awareness Survey 2017
Testimonial from Health and Social Care Workforce Lead, Strategy and Transformation Team, North West London Collaboration of Clinical Commissioning Groups.
Trigg L. Improving the quality of residential care for older people: A study of government approaches in England and Australia; a summary of independent research funded by NIHR Doctoral Research Fellowship Programme. 2018 LSE/PSSRU (Available from https://www.lse.ac.uk/cpec/assets/documents/Lisa-Trigg-Summary.pdf, accessed 16 March 2021).
Professor Meyer’s contribution to improving quality of life in care homes through the My Home Life initiative has been recognised with the award of CBE 2015 (London Gazette, 31 December 2014, Supplement No. 1, pN9) and being listed as one of 150 Leading Women (1868–2018) by University of London in 2017. (Available from https://london.ac.uk/about-us/leading-women-1868-2018 accessed 18 March 2021).