Impact case study database

The Was Not Brought message has had a significant impact, in both hospitals and the community (in health and social care) because it helps professionals to think differently about why children might be missing scheduled appointments. The change in terminology acts as a cue for analysis and action to prioritise the wellbeing and safety of children. It has led to numerous positive changes in children’s safeguarding policies, training and clinical practice.

Impact on Policy

The Was Not Brought message has been adopted by a variety of governing bodies and national societies.

• The recommendation to use Was Not Brought instead of Did Not Attend has been implemented in national safeguarding policy. It is included for the first time in the 4^th Edition of Safeguarding Children and Young People: Roles and Competencies for Healthcare Staff published by the Royal College of Nursing (RCN) (2019) on behalf of the 10 Royal Colleges and 12 professional bodies (across medicine, allied health, nursing and midwifery). Significantly, Was Not Brought is now identified as a core competence required of ‘all staff working in health care services’ and trained in safeguarding from basic Level 1 to specialist Level 5 [S.1a].

• It is a key recommendation of The Children’s Society Report (2017) Stick With Us: Tackling missed appointments in children’s mental health services, where our Was Not Brought work is cited and providers of specialist Child and Adolescent Mental Health Services (CAMHS) are advised to ‘develop processes to respond’ [S.2].

• The Royal College of General Practitioners/NSPCC toolkit recommends that all primary care practices should have procedures in place for identifying and following up children who miss scheduled appointments with the practice or with other agencies [S.3a].

• The NHS England Commissioning Standard for Paediatric Dentistry now refers to Was Not Brought [S.3b].

• The British Dental Association (BDA) has published dental guidelines and a care pathway on Implementing ‘Was Not Brought’ in your practice, informed by our work [S.1c].

• The RCN is including, for the first time, reference to Was Not Brought and our work in its revised guidance for nurses, to be published imminently [S.3c].

In a critical commentary of the 2012 Powell and Appleton paper, Professor Eileen Munro who led the Government’s 2011 child protection review noted: “ this paper presents a cogent argument for treating children and young people’s failure to attend medical appointments differently from that of competent adults. The language change from ‘did not attend’ to ‘was not brought’ is a simple mechanism for triggering a different reaction” [S.4]. The Care Quality Commission report (2016) Not Seen, Not Heard: a review of the arrangements for child safeguarding and health care for looked after children in England references her review of the 2012 Powell and Appleton paper when highlighting the importance of reframing Did Not Attend as Was Not Brought in policies, protocols and pathways to support multiagency working in keeping children safe [S.1b].

Impact is evidenced throughout the country with the widespread change from Did Not Attend to Was Not Brought in acute hospital and community NHS Trust (n=223 Trusts) and dental policy. Most organisations have a separate policy (see for example Portsmouth Hospitals NHS Trust [S.5a/b] ) and some have produced patient information leaflets on Was Not Brought [S.5c]. The Strategic Lead for Safeguarding Partnerships in Nottingham City Council has reported: “Poli cies and procedures across the Local Authority have now been changed to reflect this position. I attend many meetings and conferences with regard to children and over the last 4 years I can barely recollect a professional saying, ‘did not attend.’ The shift in language in Nottingham has been significant and this has clearly led to improved outcomes for children” [S.6a]. Furthermore, a survey of the UK’s 22 NHS Children’s Hospitals has shown that 71.5% of the 14 respondents have changed their hospital policy to Was Not Brought [S.5d]. Codes have also been introduced in general practice IT systems (EMIS, SystmOne and Snomed) to record Was Not Brought [S.5e/f].

The Safeguarding Children Representative and Vice President of the British Society of Paediatric Dentistry, who has cited our research in lectures, international conferences and dental publications, described the impact of our ‘ ground breaking paper’ on the dental profession. “ WNB has replaced DNA as the preferred term for missed appointments across the speciality of Paediatric Dentistry, and is becoming more widely known in dentistry. On reflection Dr Powell and Professor Appleton’s research was pivotal in unlocking a way forward…Their 2012 paper in a nursing journal continues to have an impact, crossing normal professional boundaries way beyond the original intended audience” [S.5g]. In addition, a major dental software company (Software of Excellence) has added Was Not Brought functionality to its EXACT V13.12 dental software product in response to the move to using Was Not Brought [S.5h].

Impact Through Serious Case Reviews (SCRs): Shifting Staff Awareness

The failure to ensure children’s access to health care is recognised as a child protection issue within statutory definitions of neglect. It is known to be a prominent feature in some SCRs and has also been linked to preventable deaths in childhood. The Was Not Brought message is starting to be picked up in some SCR reports, see for example Frame (2017) and Sefton LSCB (2018) [S.7a]. An SCR is undertaken after a child dies or is seriously injured following child abuse or neglect. SCRs look at lessons for all agencies (health, police, education and social care) that can help prevent similar incidents from happening in the future. One SCR report was of a child’s death reviewed by [Redacted Name] Local Safeguarding Children Board where the child had missed several appointments. The report’s author referred directly to our work and wrote: “ Child X ‘Was Not Brought’ to 23 appointments over a 2 year period. To describe the missed appointments in these terms focuses the mind more upon parental responsibility, and questions the underlying reasons for why a child would not be brought to so many appointments” [S.7b].

Evidence from the NSPCC national repository of SCRs demonstrates a move away from the term Did Not Attend since 2012 and a growing trend to thinking about children ‘not being brought’. Of the 184 SCRs held within the NSPCC’s repository that refer to poor engagement, 13% (24) use the term ‘was not brought’ in general parlance (i.e. descriptive, not in relation to policy) and 11% (21) specifically recommend a change in terminology and practice from Did Not Attend to Was Not Brought. In total, 9 reviews cited a change in policy from Did Not Attend to Was Not Brought as a result of the SCR recommendations. This demonstrates change in practice and represents an important contribution to improving child safety outcomes [S.7c].

Impact in Practice

In direct response to the Was Not Brought message, Nottingham City Local Safeguarding Children Board created the YouTube video animation Rethinking Did not Attend [S.8a]. The idea for the video developed directly from our work, when the author of an SCR following a child’s death cited our work [S.6a]. The video (with 75,258 views) has garnered a lot of positive interest across the UK, Europe, Australia and New Zealand, demonstrating the international reach of the original research [S.6a; S.6b]. Was Not Brought is now widely referred to in staff safeguarding training across NHS services, dentistry and social care [S.1c; S.2b], and is now a core competence for child protection practice [S.1a]. The video is a powerful reminder that children do not take themselves to appointments, and for practitioners to reflect on the impact of missed appointments on a child’s wellbeing. This shift has meant that professionals now do not just record missed appointments as Did Not Attend without analysis, leading to significantly improved early identification and referrals to children’s social care [S6.a].

Impact on the Welfare of Vulnerable Adults

Safeguarding trainers have also translated the learning from Was Not Brought for use within adult services, using the same principle in understanding vulnerable adults or people living with poor mental health or with learning disabilities [S.6b]. The BDA are also piloting extending the Was Not Brought approach to vulnerable adults, with plans to publish guidelines in due course [S.5g]. Nottingham Clinical Commissioning Group have also commissioned a new video Missing Appointments Matter, which has stemmed from our original Was Not Brought work and broadens the focus to adults [S.8b]. The charity Inclusion Gloucestershire has used the Was Not Brought title and developed a short film about the difficulties faced by those with disabilities who need assistance to access doctor’s appointments [S.8c]. These examples in differing contexts demonstrate the reach of the original work.

MOReS has been at the forefront of a paradigm shift: from fear that exercise might trigger and aggravate symptoms in people with LTNCs towards the determination of specific condition-informed prescription for therapeutic benefits of physical activity and exercise. Exercise is now seen as an essential part of managing these conditions to benefit function, health and well-being, and in children to also benefit skill and academic development. We have produced evidence and developed interventions for safe, effective exercise across a number of conditions including, but not limited to, PD, MS and demyelinating conditions, Huntington’s, stroke, acquired brain injury, cerebral palsy and development coordination deficiency. Our work has made a major contribution to the transformation that has taken place worldwide and directly influenced those recommending, supporting and providing exercise, and those involved in informing and training health and exercise professionals.

Helping people with PD benefit from exercise: Collett et al. 2017 (R5) established that people with PD were able to safely self-manage and adhere to exercise in the community. These results were rapidly translated into the exercise component of the First Steps programme, which was conceived by people with PD to provide information and support and empower self-management for those newly diagnosed. We designed the exercise component of the programme and, in 2017, Parkinson’s UK funded Dawes to develop First Steps into a program that could be offered to all people newly diagnosed with PD in the UK (S1). The First Steps service was adopted by Parkinson’s UK and has been running at nine UK sites (S2). Unfortunately, roll out to all 21 regional excellence network centres has been delayed due to COVID-19. However, Parkinson’s UK rates First Steps as 1 of its 8 stand-out achievements since 2015, and report that participants gave it a 100% satisfaction rating (S3). In conjunction with this, the team’s research insights into exercise-altered responses in people with PD (R1) have informed dose and intensity guidance as part of the Parkinson’s Exercise Framework created by Parkinson’s UK (S4). The Framework complements First Steps in supporting approximately 200 health professionals to prescribe exercise for those with PD.

Because of the team’s unique insight into the metabolic response to exercise in people with PD (R1), the team were able to successfully support Robin Abby (who has young-onset PD) row across the Indian Ocean. The team assessed his exercise response and recommended individualised safe exercise training parameters and intensity limits to enable him to complete the row (more people have been to the Moon than have completed this challenge). Robin benefitted at an individual level, with his crewmates noticing that his limp had gone at the end of the row and the monitoring teams showing that his motor symptoms (rigidity and gait) had improved. The purpose of the challenge was to raise awareness of young-onset PD, with the empowering message of what you can achieve with PD. It achieved excellent public and media engagement worldwide across TV, radio and print, with articles in The Express, The Telegraph and Huffington Post, and coverage by the BBC, ITV and ABC in Australia (S5).

The overall contribution of our research impact on people with PD was externally recognised by Universities UK in ‘Made at Uni: 100 ways Universities are saving lives and keeping us healthy’, a campaign showing how universities improve everyday lives (S6).

Improving local community physical activity provision: Our research identified barriers and facilitators for people with long-term conditions and disabilities participating in physical activity (A). This research has informed the physical activity care pathway in Oxfordshire. We ensured the pathway (GO Active), commissioned by Sport England in 2014 for the general sedentary population (S7), was appropriate for those with chronic disabling conditions through providing specific training to eight motivational interviewers and advising on activities. Since the implementation of GO Active, there has been an increase in those with chronic disabling conditions being active in Oxfordshire (S8) equating to 46,349 people with disability in Oxfordshire in 2018 being active and the county having the lowest rates of inactivity in this group in England (34.8% compared with the national average of 44.0%) ( https://www.sportengland.org/know-your-audience/data/active-lives/active-lives-data-tables). Subsequently, Oxfordshire Clinical Commissioning Group funded the pathway for people with diabetes (between July 2018 and November 2019, the programme recruited n=1,035), with 29% meeting UK physical activity guidelines at baseline increasing to 41% at 3months.

In addition, our pioneering research has revealed altered perceptions of effort in children with movement difficulties, whereby exercise feels harder and more fatiguing (R3). This, combined with our research that identified the support required for children with movement difficulties (R5), has led to improved understanding and adapted programmes to support exercise. We have implemented these programmes through our Clinical Exercise and Rehabilitation Unit to support local schools. The direct benefit to young people was demonstrated in an OFSTED report (S9) that states ‘ … This provides these students with highly specialised clinical exercise and rehabilitation support. There is detailed, effective and frequent communication between staff of the resource base and staff at the university. Consequently, these students make good progress.’

Furthermore, these insights have been incorporated into interventions that can be delivered at scale through schools and the community (R6, C). This research is being used by the Iranian Ministry of Education to support Physical Education (S10). Dawes delivered training that was incorporated into Shad ( https://www.shad.ir/) the online learning platform used by Iranian schools, watched by 46,000 people live and available to approximately 14,000,000 users. The Deputy Minister of Education advised that these materials be used to increase physical activity.

Leading the training of professionals: We developed the UK National Occupational Standard ‘ Design, agree and adapt a physical activity programme for adults with long-term neurological conditions’ (NOS D522- https://studylib.net/doc/7685627/d522---skillsactive) predicated on the body of research across various LTNCs and specifically the findings of the LIFE study (B). Previously, we were the only accredited provider to deliver these standards, training 136 professionals and enabling them to prescribe exercise for people with LNTCs through the registered qualification. Since 2019, the Wright Foundation (a community interest company and training provider) has also been accredited to deliver the National Occupation Standard we developed. Running four intakes a year, the new course will provide the opportunity for the number of exercise professionals with this expertise being trained each year to be increased by approximately 80 ( https://www.wrightfoundation.com/Neurological.php).

Internationally developed curriculums for professional use have been delivered in China, Brazil, Australia, Iran and Jordan. For example, our training standards have been incorporated into the first Rehabilitation MSc in Jordan, funded by Erasmus+ to support the refugee crisis (S12). The team trained lecturing staff from Hassemite, University of Jordan and Jordan University of Science and Technology, and developed the lecturing materials. Further to the 30 physio and occupational therapists trained so far on the MSc, a face-to-face training workshop was delivered in the UK to 11 clinical academics from three universities and one hospital in Jordan, with the aim of further dissemination to approximately 1,000 physio and occupational therapists in Jordan. This will empower them to support exercise in adults and young people living with neurological or multiple conditions.

OnLineTraining Ltd, a training provider for teachers and teaching assistants who support children and young people with special educational needs, which operates in 104 countries, recognised our work and asked to incorporate our research insights into their motor coordination difficulties course (S11). The course now includes content, directly informed by our research, on assessing gross motor skills and identifying children with problems, considering exercise capacity and the perception of exercise and fatigue, identifying appropriate activities and interventions to improve fitness and coordination, as well as suitable techniques. Despite COVID-19, 156 people (n=28 in the UK and n=128 in Australia) have completed the training since 13 January 2020 and have improved knowledge of how to support exercise in these children.

Research conducted by the SCCRG has had a significant impact on improving the experiences, quality of life and health outcomes of people living with and beyond a cancer diagnosis locally, nationally and internationally by influencing policy, practice and service development. This is demonstrated by our work uncovering the consequences of diagnosis and treatment of prostate, pancreatic and pelvic cancers.

Improving experiences and outcomes of men living with and beyond a diagnosis of prostate cancer:

Around 48,500 men are diagnosed with prostate cancer every year in the UK and around 1 in 8 men will get a diagnosis in their lifetime. PCUK/Movember are using the findings of our landmark LAPCD study to highlight variation and gaps in services to government and cancer alliances, and lobby for improved services to patients [S1]. For example, our work highlighted the lack of support provided for men experiencing erectile dysfunction following treatment. As described on the PCUK website, *“…These results not only highlight the importance for all men to speak out honestly about their side effects, it’s equally important for all healthcare professionals treating men for prostate cancer to incorporate support for erection problems within post-treatment follow-up plans. In a bid to tackle the problem, the Movember Foundation [has funded] an online self-management programme for people living with prostate cancer, through the global TrueNTH initiative which is available now online.*” [S1] This includes an e-resource, ‘Maximising Sexual Wellbeing’ ( https://prostate.lifeguidewebsites.org). The Movember Foundation has committed over GBP5,000,000 million in the UK and over USD35,000,000 globally to change the way men live with and beyond prostate cancer.

Significantly, PCUK are also using the LAPCD findings to inform their own strategic and service developments. For example, our study highlighted the particular challenges faced by men receiving ADT and, as a result, PCUK has established projects to make sure that men receiving this type of treatment receive the support they need, and to investigate variation in the use of ADT [S2]. We also highlighted the difficulties men face with treatment decision-making and the PCUK Health Information team subsequently undertook a user-led investigation into how treatment decision-making can be better supported. PCUK nurses are also piloting a sexual support telephone service [S2].

To drive service improvements at a local level, the LAPCD study team has developed toolkits presenting NHS Trust-level patient outcomes data alongside a national comparator for each of the 111 NHS Trusts across the UK who took part in the study [S2].

Movember, the global men’s cancer charity, have used the study findings to populate an interactive, web-based tool for patients called ‘Men Like Me’ (c. 3000 men in the UK have used the site so far, with plans for further marketing and extended access beyond the UK). This enables men with prostate cancer to explore the outcomes seen in men with similar characteristics (e.g. age) and who have had similar treatment, to use this information to help them understand what is normal after diagnosis and treatment, and help inform treatment decision-making and help-seeking for side effects of treatment [S3]. The UK Movember website has significant reach, with 2,489,885 new users in 2019 and over 5,000,000 hits recorded.

Improving experiences and outcomes of people with Pancreatic Cancer:

Pancreatic Cancer UK cites Watson et al, 2019 (Ref 5) in its 2019 Annual Report, explaining that they are using our findings to guide their service development and expansion of support, as well as working with NHS commissioners to close gaps in care, and campaigning for improvements in earlier diagnosis and faster treatment within the NHS and across the UK, in patient services and support within the NHS [S4]. Driven by our key finding regarding the lack of psychological support for pancreatic cancer patients, Pancreatic Cancer UK have developed a training course for nurse specialists addressing the psychological impact of diagnosis. The first training course was run in March 2020 and was fully subscribed (16 attendees). The planned roll out across the UK has unfortunately been temporarily delayed due to the coronavirus disease pandemic. Nutrition was another area of unmet need highlighted by our research and, as a result, a first training day on Dietetic Management & Pancreatic Cancer was held in Leeds on 9 October 2019, which was attended by 44 dietitians and clinical nurse specialists; a second was conducted virtually in October 2020, attended by 60 health professionals [S5]. A presentation was also made to the All Party Parliamentary Group on Action against Cancer and the National Cancer Patient Experience Advisory Group, who are utilising the findings on unmet needs in some of the workstreams included in the NHS Long-Term Plan, such as health and wellbeing support and the work on early diagnosis [S6].

The main study findings were also integrated into the 2019 Pancreatic Cancer UK Clinical Pioneer Awards research funding call. This call included ‘supportive care’ as one of the priority topic areas for bids, with interventions to address psychological needs (unmet psychological needs was one of our main findings) and the development of a Quality of Life Metric (to build on our survey) highlighted as potential examples of projects within this topic area [S7].

Improving experiences and outcomes of patients receiving radiotherapy treatment for pelvic cancer:

The findings from our Pelvic Radiotherapy Late Effects Study which highlighted the prevalence of long term and late effects of treatment were cited in the influential Macmillan Cancer Support 2013 report ‘Cured–but at what cost? Long-term consequences of cancer and its treatment’, which provided, for the first time, estimates on the numbers of people in the UK affected by distressing problems such as chronic fatigue and bowel and urinary problems, including incontinence, pain and sexual difficulties [S8]. As a direct result of the report, the Macmillan Consequences of Treatment (CoT) programme was established and has been a significant driver in shaping cancer survivorship policy, practice and research in England since 2013. For example, the importance of addressing the consequences of cancer treatment has been highlighted in national Cancer Strategy documents since 2013, including Achieving Word-Class Cancer Outcomes: A strategy for England 2015–2020 (page 31); Improving Outcomes: A Strategy for Cancer – Third Annual Report (page 63); and Cancer across the domains: a vision for 2020 (page 8) [S9]. A ‘Consequences of Cancer Toolkit’ for primary care professionals to help them identify and manage the consequences of cancer treatment, and to support patients to live well after a cancer diagnosis, is an example of many positive interventions resulting from the CoT programme [S10].

Locally, a consultant oncologist from Oxford University Hospitals (OUH) NHS Foundation Trust has described how our findings were instrumental in the establishment of a late-effects clinic for patients treated with radiotherapy to the pelvis, and the appointment of a radiographer and gastroenterologist with a focus on late effects *“..we had a very successful Pelvic radiotherapy late effects meeting in January 2016 [where our findings were presented] which […] significantly improved communication between all departments but particularly Gastroenterology. Awareness increased amongst the multidisciplinary team. As a result, we have had … discussions with the dietetics team to increase support for radiotherapy patients, which has now been achieved… Through the Maggie’s Centre we have run a Pelvic radiotherapy support group for patients. We have also raised awareness within radiotherapy for psycho- sexual issues following cancer treatment and now have radiographers trained to offer support [...]*” [S12]. This resulted in the OUH NHS Trust appointing a Macmillan Late Effects radiographer, as well as appointing to a new gastroenterology oncology post with dedicated time for managing the effects of cancer treatment in 2019.