Impact case study database

We have created an accessible treatment that works. In 2015 our hemianopia training paradigm was converted into a multiplatform app (Durham Reading and Exploration; DREX), such that it can be completed unsupervised on either a computer or a touchscreen tablet. The app has been available for free to download since July 2015 via Google Play, the App Store, and our webpage. End-users including patients, carers, and healthcare professionals were consulted to understand the facilitators and barriers to using DREX (2015-2017), with their input incorporated via an iterative process to improve the functionality and accessibility of the training package. The DREX app was subjected to a randomised controlled trial (2015-2018), and both computer- and tablet-based usage significantly improves search behaviour and reading [see Figure 1; E1], in addition to activities of daily living and motivation for rehabilitation [E1].

Figure 1: Bar graphs depicting the mean post-training improvement in a) visual search, and b) reading for patients completing DREX on a tablet or computer, as well as a standard care control group.

Many users have reported that DREX has helped them to overcome their visual loss, resulting in drastic improvements in their everyday life. Example quotes from some of our patient testimonials highlight this further; “The training helps using the remaining vision ability in an effective exploring way and therefore compensates a lot. I’m so grateful for having access to your programme”; “My peripheral vision loss seems to have improved so much I don’t even notice it any more”; “I managed … a review of a 57 page document. The progress is, I am sure, through the focusing exercises I have done through DREX … your software is certainly helping me to reclaim my life” [E2]. One of the primary complaints of patients with hemianopia is that they have their driving licence revoked which reduces their independence, and DREX has the potential to overcome this; “My recent field test … showed that my field of vision is now within DVLA standard, thanks largely I think to regular use of DREX” [E2]. Furthermore, users indicate improvements in hobbies such as bike riding, archery, cross-stitch, and reading [E2], and often report generalised benefits such as in confidence and attention (e.g., “I can concentrate more”) [E2]. The user testimonial evidence indicates the positive impact that the DREX app is having on the ability of people to live independently and enjoy their lives with renewed hope.

The earlier CD-ROM version of the training (discussed in a REF 2014 impact case study) was requested by approximately 50 people. However, converting the DREX training into a free multiplatform app has improved its accessibility substantially by allowing patients from all over the world to take control of their own rehabilitation independently of the research team; the DREX app currently has over 2,250 unique users. Furthermore, the unique clinician portal (with at least 40 current users) allows healthcare professionals to remotely access patient data, thus personalising care for each patient and resolving a need for cost-saving efficiency in treatment not reliant on hospital visits. Anecdotal evidence tells us that DREX users are primarily UK-based, but we have also reached international users in countries such as the United States of America, Malaysia and New Zealand [E2, E3, E4].

From the very beginning of the app’s development, and during updates since, we worked with patients and healthcare professionals to address barriers such as accessibility, technical expertise etc., to ensure its efficacy is not hindered by peripheral issues [E5]. Part of this stakeholder integration included DREX workshops conducted over the summer of 2015, which were attended by 39 patients and 15 healthcare professionals from the North East of England (Teesside, County Durham, Newcastle, and Northumbria). 100% of the attendees reported the DREX app as being worthwhile [E6] and based on their feedback we created a YouTube channel which includes instructional/informational videos. This has helped to extend awareness of hemianopia and its rehabilitation (for example, one of our DREX YouTube videos has over 900 views), as well as providing additional support to users. Feedback from a healthcare professional emphasised the value of the DREX informational videos; “It is brilliant because … their curiosity is still piqued by technology but they do lack the skills … It’s really good you’ve got those videos” [E3]. The social media and online profiles for DREX also provide a means for users to support one another. For instance, DREX has been shared publicly on Facebook with stroke survivors referring DREX to one another after positive experiences with the training [E7].

In order to generate impact, the work has been communicated via multiple channels including directly to NHS trusts, relevant charities, and also at national and international conferences. Such activities have increased awareness within both the clinical and patient community of the DREX training tool; “I certainly got a lot from the session and I know the rest of the team did as well” [E3], and it is perceived as a helpful tool (e.g., “It’s really good”, “…everyone is rather excited about having someone to refer visual patients”) [E3]. Feedback from attendees at the UK Stroke Forum (UKSF) in 2017 indicated their enthusiasm for DREX (e.g., “Free app for treating hemianopia! Not just free but also evidence-based”), with comments highlighting some of its features (“DREX app for hemianopia has a button that allows MDT to log on and see how well their patient are doing”) [E8]. Healthcare professionals are also sharing knowledge of DREX between one another as evidenced by example quotes from a UKSF attendee “Will be sharing this with my colleagues!” [E8], and email testimonials, “I will forward the below email to our teamleader so it can be distributed to all our staff” [E3].

We are also aware that healthcare professionals are recommending DREX to patients in the UK, and that both staff and patients appreciate having the resource available (e.g., “Thank you for DREX. I am so glad my neurologist suggested it!!”) [E2]. Furthermore, DREX is being recommended to patients by clinicians in Malaysia, where low vision hospital practitioners have been using it [E3]. Not only that, but some of the assessment tasks built into the app have also been used to extend the assessment practices of these same clinicians; “The optometrist … has used the search assessment from DREX … This is something new for her as there was no such testing done in her hospital” [E3]. This indicates that DREX not only has value within rehabilitation, but also in the initial assessment of visual field defects that enables more effective overall management of the condition.

DREX is not only being used as a rehabilitation tool, but also has influenced teaching practice in Malaysia; “Now I am using DREX for teaching. Introducing final year optometry students to DREX, so that they can use this app at their own practice or hospital in the future” [E3, E4]. Furthermore, occupational therapy researchers at Otago Polytechnic in New Zealand asked to collaborate on a project investigating whether using DREX can provide a vehicle for clinical training and education about neurological vision impairment. An email excerpt from their lead researcher shows their enthusiasm for DREX, and the potential that they see in the tool; “I am very excited by DREX and I believe that it is the perfect tool to integrate clinical/educational focus that will upskill our clinicians, while providing a real service. I believe that DREX could become the focus of our educational efforts over the next year” [E4]. New Zealand is a geographical area notorious for the lack of knowledge and viable rehabilitation options for visual deficits, and so informing therapists of DREX can help to raise awareness. This ongoing project permits verification of the training in New Zealand whilst also continuing to raise awareness about the DREX training tool on another continent.

Increased interest in DREX within the stroke and acquired brain injury communities is evidenced by professionals choosing to include DREX in their publications and amongst their featured resources. For example, the British and Irish Orthoptic Society (BIOS) booklet highlighting the available technology for stroke rehabilitation features DREX, and the app is also included on the Stroke Association’s “My Stroke Guide”, an online platform which provides advice and videos on how to manage stroke recovery [E9].

In short, we have revolutionised the rehabilitation of brain-injury related visual field defects, increasing patients’ independence, confidence, and vision-related quality of life. In the words of one of DREX’s users, “an amazing bit of kit!” [E2].

The underpinning research has shaped a variety of activities aimed at normalising voice-hearing. It has informed the development of professional training packages, new resources for voice-hearers and clinical tools for mental health practitioners, as well as an ambitious programme of public engagement that includes arts-based initiatives and video game development (recognised by the AHRC Medical Humanities award for Best Research 2020). It has been widely disseminated through local, national and international media, including radio, television documentaries (e.g., BBC2’s Horizon), online articles and print journalism [E1]. Beneficiaries of the research include (1) clinicians and mental health practitioners; (2) voice-hearers, their families and carers; and (3) members of the general public.

An innovative new digital cognitive behavioural therapy (CBT) manual for distressing auditory hallucinations, Managing Unusual Sensory Experiences (MUSE), has been developed in collaboration with clinicians from the Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust (CNTW). Accessed on a smart tablet, MUSE draws directly on HtV research into the links between voices, inner speech, memory and ordinary perceptual processing [R1–3, R5–6] in order to provide tailored therapy for different sub-types of AVH. Feedback from NHS staff indicates that the manual has improved the clinical treatment of psychosis in Early Intervention in Psychosis services across the North-East and Cumbria in multiple ways [E2, E3]. Current reports from the Tyne, Esk and Wear Valleys (TEWV) and CNTW NHS Foundation Trusts estimate that approximately 50 NHS mental health staff, working in an area that stretches from York to Berwick-upon-Tweed and westwards to Whitehaven, have used MUSE in the clinical treatment of over 300 patients per year with symptoms of psychosis [E2, E3]. All clinicians who trialled the use of MUSE in the treatment of 22 patients in At Risk Mental State (ARMS) for psychosis said they would recommend the use of MUSE to another therapist working with people with distressing voice-hearing experiences [E3]. Many have reported that it allows for more structure in sessions, that it helps to engage clients, and that the innovative use of technology provided by the tablet (for example, the embedded videos, weblinks and interactive exercises) enables them to explain complex theories about how the mind works in easily understandable, accessible ways. One clinician described MUSE as ‘a really good clinical tool’ which ‘helped my development as a therapist’. Another remarked: ‘It’s affected all of my practice … it’s improved my knowledge, it’s improved my confidence and … I think patients get a lot of out of the way [voice-hearing is] represented’ [E3]. Feedback from patients has been equally positive, with many reporting that psychoeducational materials were easier to grasp when presented through the digital manual than in a normal course of CBT (‘… it was better than just talking’) [E3]. A feasibility study involving 24 voice-hearers completed in 2018 also demonstrated significant reductions in distress linked to voice-hearing. In recognition of its impact on the clinical treatment of psychosis across the region, MUSE was awarded second place in the Digital Innovation in Health and Social Care category of the North-East and Cumbria’s 2019 Bright Ideas in Health Awards.

Along with forming the basis for new clinical tools, Durham’s research has been used to directly train mental health professionals in the normalisation of voice-hearing. * **Working with Voices (April to June 2016) was a four-day training course developed as part of a long-standing collaboration with the TEWV tertiary psychosis team designed to shape clinical practice, influence attitudes of clinicians and contribute to the professional development of NHS psychosis intervention staff. The course was co-produced and co-presented by people with lived experience, with numerous sessions informed by Fernyhough and Alderson-Day’s research into the heterogeneity of voices and their cognitive and neural bases. Over 70 psychiatrists, clinical psychologists, mental health nurses, social workers and trainees from the North-East of England attended the training. For a session led by Alderson-Day (which explored the challenges for assessment posed by the heterogeneity of voice-hearing), 81% indicated that it had improved their understanding of how to assess voices, with many reporting that the session was ‘very’ or ‘extremely useful’ because of its focus on finding ‘measures to use in therapy [that] accurately reflect the service user’s experience’ [E4]. 96% of participants said that the series of sessions outlining therapeutic strategies for dealing with different sub-types of voices (which drew heavily on R1, R2, R5 and R6 above) improved their knowledge of how to work with people experiencing distressing voices [E4]. Two additional half-day training courses produced in collaboration with Rachel Waddingham (voice-hearer, Chair of the English Hearing Voices Network), which were informed by Fernyhough and Alderson-Day’s research on the links between hearing voices and ordinary cognitive processes and the nature and prevalence of hallucination-like experiences in the general population, took place in Glasgow and London (28 February and 3 March 2020). Over 130 voice-hearers and mental health professionals attended these courses, with many practitioners reporting that the training would influence their clinical practice, providing them with new resources to use with clients in order to normalise voice-hearing and reduce self-stigma [E5].

A second key strand of our work on normalisation has involved making our research and knowledge about voice-hearing freely available, nationally and internationally, to voice-hearers, their families and carers. Psychoeducation materials based on the underpinning research [R1–5] have been collated and presented in Understanding Voices (UV)**, a new web resource developed in partnership with voice-hearers, representatives from leading NHS trusts and mental health charities. The website, which extends to over 100 pages and was launched to an audience of 200 voice-hearers, family members and health professionals in Newcastle-upon-Tyne in September 2019, draws together information about the therapeutic management of distressing voices and resources exploring the cognitive and neural mechanisms underlying AVH, alongside historical, literary and spiritual approaches to the topic. UV makes accessible to a lay audience Fernyhough and Alderson-Day’s research into the varied natures of AVH and everyday inner experience, the links between hearing voices and ordinary cognitive processes, and the nature and prevalence of hallucination-like experiences in the general population. It thus helps to challenge the commonly held misconception that AVH is in itself a symptom of severe mental illness and poor prognosis, thereby contributing to a reduction in stigma (and in many cases, self-stigma) associated with the experience. In the first full year of its use, UV has been visited by more than 13,300 unique visitors from the UK, US, Australia and Canada, and more than1,535 unique visitors from European countries. Overall, the website has had over 16,500 unique users from 140 different countries in all of the continents excluding Antarctica, for a total of 23,763 sessions. The ‘Quick Read’ PDFs summarising core parts of the site have been downloaded over 2,500 times [E6]. UV is also recommended as a resource for further information on hearing voices by the Rethink and Mind charity websites.

UV is having significant impacts on clinical and voice-hearing communities. In February to March 2020, 50 mental health professionals were recruited to take part in a longitudinal evaluation aimed at assessing its effect on therapeutic practice over a 3-month period. Despite disruption from the Covid-19 pandemic, 26 practitioners completed an online survey probing their initial reactions to the site, in addition to a follow-up questionnaire 12 weeks later. Of these, 92% reported that UV enhanced their clinical practice by improving their knowledge and confidence in working with people who hear voices, helping with psychoeducation and normalisation, increasing empathy with voice-hearers, and providing practical resources to share with clients [E6]. One clinician remarked, ‘I always leave the website feeling a little more competent, a little more confident that I’ve learned something new’. Another said that UV ‘will now always be my “go to” for info re voice-hearing. I like that I can recommend [it] to my patients and I know the website will be normalising and not stigmatising for them.’ Voice-hearers and their families also reported that UV improved both their understanding of hearing voices and their quality of life by improving the way they live with these experiences [E6]. In a survey of 84 website visitors, 92% of respondents said that, after using UV, they had more positive ways of understanding and interpreting voices, with many voice-hearers remarking that the normalising information on the site improved self-understanding and self-esteem, and reduced self-stigma: ‘I believed something must be ‘wrong’ with me for hearing voices… The UV workshop and website gave me more confidence and understanding not only of my own experiences, but also others’ [E6]. 90% of visitors reported that the website yielded better knowledge about sources of support, with 83% saying that UV provided them with more coping strategies and practical tips for dealing with different kinds of distressing AVH on a day-to-day basis.

Our underpinning research is additionally serving to improve public understanding of hearing voices locally, nationally and internationally, in two key ways. First, Hearing Voices: Suffering, inspiration and the everyday, the first major exhibition on voice-hearing, was installed in Durham’s Palace Green Library from November 2016 to February 2017. Fernyhough and Alderson-Day made curatorial contributions to the exhibition and delivered public lectures, interactive workshops and podcast interviews. The underpinning research thus fed directly into gallery and virtual exhibits, which engaged approximately 6,000 visitors, and into the accompanying events programme in which 730 people participated. 27% of 105 surveyed visitors self-identified as having personal experience of voice-hearing and 46% had a professional interest in the topic. 92% rated the exhibition as either ‘excellent’ or ‘good’, and 86% reported that it had transformed their understanding of hearing voices, giving them more empathy with voice-hearers and challenging the idea that the experience is always symptomatic of pathology. The ‘Everyday Voices’ section of the exhibition, which profiled Fernyhough and Alderson-Day’s research, was often cited by visitors as being particularly significant in changing attitudes because of its emphasis on the idea that voice-hearing exists on the end of a continuum or ‘spectrum’ that includes everyday happenings such as vivid inner speech, day-dreaming and intrusive thoughts. (See E7 for more detail, esp. pp. 14–19.) Typical statements from visitors include: ‘I am within the NHS and I think the idea of hearing voices not being pathological is very interesting. I will be looking into it further and in my interactions with patients in the future, maybe finding all sorts of explanations’; and ‘I feel calmer about being the parent of a son who periodically hears voices. It seems more normal now *.*’ [E7]

Second, Hellblade: Senua’s Sacrifice is a video game developed by Cambridge-based game design company Ninja Theory (in collaboration with psychiatrist Prof Paul Fletcher), whose protagonist is a young woman with psychotic experiences. While initially developed as a game about psychosis generally, it quickly became apparent that the simulation of voice-hearing would be key to offering a sensitive and realistic portrayal of the topic. Through collaboration with Fernyhough, the game developers redesigned their approach to voices in the game, drawing heavily on the findings around the diversity of voice-hearing experiences reported in reference R5, and other HtV research [E8]. Described by reviewers as a ‘highly competent action game and a nuanced, powerful exploration of mental health’, Hellblade has sold more than 1 million copies worldwide, has been awarded the Impact Award in the 2017 Game Awards, and won 5 Baftas in the 2018 Bafta Games Awards, including Best British Game and Game Beyond Entertainment [E9]. Reviewers in particular singled out the game’s successful approach to voices: ‘The game is unsettling in a unique way, a way defined by its incredible voice design… This is clearly one of the key components to the representation of psychosis in the game and it is executed with perfection’ [E8]. A survey of Hellblade players conducted by HtV compared attitudes to voice-hearing in gamers before and after Hellblade was released. There was a significant increase in the number of respondents endorsing the item ‘I consider myself to be knowledgeable about voice-hearing’ after playing the game, compared to before the game’s release. 62% of 161 players surveyed said that their attitude towards hearing voices changed as a result of playing the game, with many reporting that the depiction of voice-hearing facilitated a better understanding of (and empathy with) what it is like to hear voices, thereby contributing to improved public attitudes to psychosis more generally [E10]. Comments such as the following were typical: ‘I have a family member who suffers from psychosis, and through the depiction of voice-hearing hallucinations in the game, I think I understand their daily struggle a little better.’ Voice-hearers have also reported that the experience of playing Hellblade yielded new (and more positive) ways of understanding their own and others’ voices, and made individuals feel less isolated, less stigmatised and better understood [E8]. Sample responses include: ‘The game allowed me to understand myself, to understand my personal voices… [it] taught me to be stronger’ [E8] and ‘I’ve never known how to describe what happens in my mind… I showed [the game] to those I’ve been unable to be honest with and connected with the people I love. I’ve never been able to before’ [E9]. In June 2018 it was announced that Ninja Theory was being acquired by Microsoft Studios, suggesting a major positive economic impact on the company.

Against a background of austerity and reductions in the levels of prison staff, the research was used to improve the training materials used with prison staff. Additionally, the act of undertaking and disseminating the research may very well have contributed positively to a Hawthorne effect in that the organisation increased its focus of activity on suicide prevention. Following directly from the government's response (E2) to the Harris Review, the numbers of suicides fell from 2016 to 2017 and this downward change in the numbers of suicides has been sustained (2018: 92 suicides, 2019: 84 suicides; E3). This impact was achieved in the following ways:

The Harris Review, the quantitative research for which was led by Professor Towl (E1) was published in July 2015 and the government’s response to this research informed a new programme of national training for frontline staff. This training programme was shaped not only by the report itself but also through a meeting between Professor Towl and Chris Barnett-Page of the Ministry of Justice (MoJ), the operational national lead with responsibility for reducing prisoner suicides.

The Safer Custody Group at HM Prisons Service HQ led on the design of the new programme informed by the research findings. The new prison officer training is 25% longer than previously and includes a focus on spotting factors which “ might indicate an increase in suicide risk”. (E2 p15) This training was rolled out throughout England and Wales over the second half of 2016 and into 2017. The new course was aimed primarily at new staff, but used as a refresher for those prison officers who had not attended recent training. More locally, Prof Towl himself organised and ran training at HMP Durham for prison officers and their managers, including the executive leadership team (E5).

The national and local training taught attendees to use the results of the research to perform research informed individual risk assessments allowing for an improved assessment of potential for suicide when used in their home institutions. Specifically, the training:

• Flagged the findings about gender differences in the age-related risk of suicide to raise awareness of the increased risk associated with young women [R2].

• Emphasised aspects of good practice in suicide prevention which should be continued and used more extensively in the early days of custody [R1] to reduce overall risk .

• Flagged the finding that prisoners who are imprisoned for arson offences are at an increased risk [R3].

In the year following the roll out of this training the suicide rate dropped from 122 deaths in 2016 to 70 in 2017, a decrease of 42% (E3). This was the greatest reduction in absolute numbers of prisoner suicides ever recorded (records began in 1978). Subsequent to this, in spite of our research showing turnover (i.e. prisoner movement) to increase risk due to relocation, there was a policy change to move prisoners more rapidly through the system increasing effective turnover. Despite this, the rates of suicide remained below the 2016 maximum, likely due to continued adherence to the other recommendations of the report.

The importance of Professor Towl’s research in this success was noted by Mr Alan Tallentire, the Director of HM Prisons for Tees and Wear: “ I know that you led the quantitative research for the Harris Review – a report which has been hugely influential for HMPPS, and the research you led informed the design of the national training for prison staff that rolled out in late 2016 and 2017.”(E4) Similarly, Professor Towl (along with the Chair of the Prisons and Offender Research Health team) wrote to the Chief Executive of HM Prison and Probation Service about practices identified in the quantitative research that were revealed to have the potential to contribute to a reduction in prisoner suicides. The response indicated that the ideas had been incorporated in informing national strategic policy on addressing suicide prevention (E6). For example, Mr Michael Spurr, CEO, HMPPS (dated June, 2017) wrote, “ many of your suggestions are reflected in the work that we are taking forward as part of the refreshed suicide and self-harm reduction strategy that is a key part of the prison safety and reform programme”.

As discussed above, subsequent to the highly successful ministerial and HMPPS dissemination and application of some of the key findings from the research, Professor Towl was approached to assist with staff training at HMP Durham. HMP Durham is a pilot ‘allocations’ prison which means that it has dangerously high levels of prisoner turnover rates, with many prisoners only staying for very short periods of time before being ‘allocated’ to other prisons. As noted our evidence is clear that such an environment will be associated with very high levels of suicide and indeed the policy of increasing transfers in 2018 had such an effect. In early 2020, Professor Towl therefore trained over 50 staff at the prison and is working with prison staff on using quality control approaches to improve individual support plans for those prisoners identified at being at a markedly inflated rate of risk of suicide. This has increased staff confidence in addressing this challenging area of prison work (E4, E5). Indeed the Prisons Group Director has recognised and favourably acknowledged the impact of this research dissemination: “ Your visits to the prison and engagement with staff and prisoners have been very supportive. In particular the staff training and support for the prison’s leadership team is already making a tangible difference at HMP Durham. I remain grateful to you for helping us with ensuring that our work on suicide prevention is evidence informed drawing from the most comprehensive research to date”(E4).

In sum, by sharpening our understanding of the factors associated with an increased risk of suicide, and through effective communication with both policy makers and prison staff, this highly influential research has changed national policy on prison officer education which, in turn, saved the lives of some of the most vulnerable people in society across the UK.