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Hand, a clinical academic with 23 years of experience in the field of PD and strong stakeholder connections, formed a key bridge between Northumbria University and practice in PD, both locally and nationally. Her position as a clinical academic was critical for delivering impact from the research. As a result of a lack of research into the caring needs of PwP, the support services available to carers were limited and inconsistent. The research undertaken at Northumbria had an impact on service design, practice, and policy, with subsequent improvements for PwP and their carers alike.

4.1 Impact on Parkinson’s UK’s support services

Parkinson’s UK is the biggest charitable organisation focused on PD and its treatment in the UK, covering all 300 NHS specialist Parkinson’s services nationally. In 2018, based on her research expertise, Hand was appointed as the nurse lead on the Parkinson’s UK Excellence Network, which develops and shares best practice across the UK, to improve the care for PwP and their families. Hand has also served on Parkinson’s UK’s Excellence Network Underserved Group since 2015, a taskforce created to provide a strategic, nationwide approach for those who miss out on support.

Hand’s research underpinned the redesign of Parkinson’s UK’s support services, which has led to the introduction of the Parkinson’s Connect service [ E1, E2a]. This aims to provide support to PwP-carer partnerships. The service is the first in the UK to offer educational, emotional, physical, and psychological support to carers – as well as family and friends of PwP – from the outset of the carer journey, independently from the PwP. This is the first formal recognition of the role of the carer as a valued partner to the care system to keep PwP at home for as long as possible. Users of the services can self-refer [ E2b] or be referred by professionals at any point and have access to support via various forms of communication, including website, text messages, phone calls, printed information, podcasts, and face-to-face conversations.

Parkinson’s Connect is now an integral part of the NHS care pathway advocated by Parkinson’s UK. Implementation is currently underway in Northumbria, Cornwall, and North East London. This is part of a plan to extend it to 10 NHS services – reaching 15,000 PwP – by the end of August 2021 [ E1, E2b], and to the whole of the UK from late 2021, although the expansion has been slower than anticipated because of the COVID-19 pandemic [ E2; E1, p2]. 118 people (91 PwP and 27 carers) were referred at diagnosis between January 2020 and December 2020 and received additional individualised support [ E1, p3]. Implementation barriers and facilitators are being systematically recorded and will inform the roll-out of the service nationally.

In addition, in 2019, Parkinson’s UK’s Underserved Group created a leaflet titled ‘Caring for your resident with Parkinson’s’ [ E3a] to give guidance to care homes on how to look after PwP in their care homes. The content featured contributions from Hand’s research [ R4], including information on the importance of residents getting their medication on time [ E3a, p8] and looking out for their mental health [ E3a, p7]. Almost 1,600 printed copies of this booklet have been distributed and it was viewed more than 500 times online between November 2019 and November 2020 [ E3b].

4.2 Impact on national policies and guidelines

One of the key functions of Parkinson’s UK is to campaign for better care for PwP and regularly respond to Government consultations. The Head of Policy and Campaigning explained that ‘Results from Annette’s research have been incorporated extensively into Parkinson’s UK policy and campaigns work’ [ E1, p1] . This includes Parkinson’s UK consultation responses to the National Institute for Clinical Excellence (NICE) guidelines for supporting adult carers (NG150, 2020 [ E1, p1]) and for treating chronic sialorrhoea, a problematic secondary symptom of PD (2019, TA605, [ E1, p1]).

Hand’s research demonstrated that informal carer mental health worsened as a result of being a carer [ R2]. Evidence from this research informed an All-Party Parliamentary Group (APPG) made up of professionals, PwP, and their advocates, demonstrating dissatisfaction with current mental health services. The final report, ‘Mental Health Matters Too’ (2018), referenced the research findings [ E4, p39], highlighting the need for carers’ mental health to be taken into consideration. As a direct result of the research, the report recommended that ‘carers and family members should be supported in addressing their own mental health concerns by [healthcare] professionals and should be signposted to Parkinson’s UK support services’ [ E4, p30]. This now includes Parkinson’s Connect (as above).

These research findings were then included in Parkinson’s UK’s co-development of the NHS RightCare Progressive Neurological Conditions Toolkit (2019) [ E1, p1]. The toolkit was supported by NICE and created to support health systems understand the priorities in care for those people who are living with neurological conditions, including PD. Hand’s research mainly fed into the Mental Health support content [ E5, p8], which acknowledged the importance of meeting the mental health needs of carers.

4.3 Impact on PwP and their carers

The findings from Hand’s research and the publication of the recommendations in the APPG ‘Mental Health Matters Too’ report led Northumbria Healthcare Trust’s Parkinson’s Specialist Service – which runs clinics in the region to support 1,600 PwP – to incorporate a new Parkinson’s recording template on the nationwide primary care recording system SystmOne, used as part of a broader move away from paper-based systems in the NHS. Hand created the template based on her research, and it includes a systematic and proactive assessment of caring arrangements and carer strain under ‘Social Changes’. There is now a clear identification of care needs, facilitating advanced care discussions and addressing carer issues such as strain and mental health, which were not previously considered. In order to ensure coordination, all General Practitioners (GPs) and other healthcare services can access the template, which is currently available to 96 GP practices in the North East. The new process prompts referrals for formal care and embeds carers’ assessments, enabling PwP to remain at home for as long as possible, or ensuring a smooth transition into a care home. This benefits informal carers, ensuring their needs are being met by a more carer-friendly NHS. Between April 2017 and November 2020, a total of 1,315 people have been entered as carers in SystmOne [ E6a, E6b]. Being identified as an informal carer then facilitates further interventions to help reduce strain both for the PwP and carer. Examples include referrals to the Parkinson’s Connect service [ E6b, p1], social services, talking therapies [ E6b, p2], and befriending services that allow PwP and their carers to have some time apart [ E6b, p3]. Following the success of this regional work, Parkinson’s UK is currently developing a national template for primary care, although the roll-out has been delayed by the ongoing COVID-19 pandemic.

Offering consistent, responsive, and direct support to carers as a result of Hand’s research has meant a great deal to carers under strain. Carers often struggle with the guilt of taking care of themselves, and as a result, are often tired, overwhelmed, and in need of respite. A [text removed for publication] is the carer for her husband [text removed for publication], who has complex PD, is now unable to walk and needs support with many medications and personal care. Since 2015, they have been part of the Northumbria Care Needs Project. Since the role of the carer has been formally recognised, she now feels:

‘that when we come to clinic how I am doing is just as important as how [text removed for publication] is doing … I am made to feel a very important part of the care team and I know I can talk to [Annette] about anything, and this support is my lifeline. We talk about how I am coping and managing and that makes such a difference to me … Knowing that there is someone that takes my needs into consideration too and really does care about us both makes such a difference and has really helped me to continue in my caring role for [text removed for publication]’ [ E7].

M [text removed for publication] is the main support and carer for his wife, who was recently diagnosed with PD. They were referred to the PD Connect project and received trustworthy and up-to-date information and advice.

‘We now understand that it is very important to support each other and for me to provide reassurance and positivity when required … I am grateful that this support [from a partner or someone] is acknowledged by the project by taking the time to make sure that we are supported as well’ [ E8].

Impact from Northumbria’s biocatalysis research has been primarily delivered through and for Prozomix Limited, a privately-owned, research-intensive biotechnology company based in the UK that is focused on the discovery and production of biocatalysis enzymes. Prozomix is one of only six companies in the world specialising in biocatalysis enzymes and its customer base includes ten of the eleven leading pharmaceutical companies, along with prominent synthetic biology companies. Prozomix has benefitted from the research in three ways: (i) bringing new and improved products to market, (ii) resulting commercial benefits, and (iii) business growth. More broadly, there are efficiency and environmental benefits that have resulted from the new green chemistry processes built on Northumbria’s research.

Visiting Professor Simon Charnock, the Managing Director of Prozomix, acknowledges that, without Northumbria research, the company ‘would not have been able to gain the market share it has’ [ E1]. In particular, four areas of product development have been identified as key to the company’s success. Northumbria research and collaboration since 2011 has led to ‘very large diverse panels of biocatalysts developed that now comprise the popular Prozomix biocatalysis Enzyme Toolkit’ [ E1, E2]. This product has enabled Prozomix to rapidly become a global player in the enzyme screening market [ E1]. Meantime, the applied metagenomics work enabled Prozomix to ‘quickly and cost-effectively develop beyond state-of-the-art “maximum diversity” proprietary enzyme panels’ [ E1].

Further to this, Northumbria’s research led to the development of numerous additional panels of enzymes, key to taking market share, for example of carbonyl reductases from the KRED superfamily. In this case, ‘not only did Northumbria devise the metagenomic sequencing and data analysis strategy, but they also aided in the design of a rapid and efficient method of analysing/screening the novel KREDs generated’ [ E1]. This resulted in the kREDy-to-go^TM product, which utilises Northumbria’s novel, high-throughput colorimetric screening technology [ R6; E1; E3, p3] and has made the screening of enzymes much cheaper, easier, and quicker for Prozomix’s customers [ E2]. Another highly desirable panel of enzymes enabled by the Northumbria collaboration is Prozomix’s range of cytochrome P450 enzymes [ E4, p2]. These represent a large enzyme superfamily, members of which catalyse the oxidation of a wide range of organic substrates. This has enabled Prozomix to enter the drug metabolism market. These enzymes have generated significant revenues from customers in the flavour/fragrance and chemical industries [ E1].

The new and improved products that Prozomix has brought to market through their work with Northumbria University have resulted in commercial benefits for the company, including ‘lucrative enzyme discovery and supply agreements with 10/11 of the largest pharmaceutical companies in the world, now a source of significant and rapidly rising sales revenue’ [ E5]. It has also resulted in more than 50% market share of biocatalysis screening within the pharmaceutical industry [ E5]. As well as growing its market share, the company has adapted its business plan in the light of work with Northumbria [ E6]. The increased number of enzyme panels gave Prozomix the opportunity to move away from its one-off ‘hit fee only’ based model to a long-term (20 years per hit) recurring revenue stream from all panels offered by the company [ E6]. [Text removed for publication] signed-up to the new agreement very quickly, demonstrating that the expanding collection of panels within the Biocatalysis Enzyme Toolkit were compatible with the intended target market. Virtually universal interest from the leading pharmaceutical companies has followed in the current overall Toolkit offering, with Prozomix viewed by this sector as an emerging leader in this highly lucrative industry category [ E6].

As a result of the success underpinned by Northumbria research, in 2015 Prozomix’s business model expanded by entering the contract bulk enzyme production market. This expansion involved increasing manufacturing space from 3,000 ft² to 11,000 ft² by purchasing a factory in Northumberland, and further significant investment in pilot and production equipment. Despite such significant investment, take-up by clients was such that Prozomix benefitted from a return on investment after only two years [ E5]. Prozomix is currently expanding its fermentation capacity further still, from 1,000 L to 7,000 L total working volume, sufficient to supply the global annual demand for most enzymes requested. Prozomix will thus shortly become the only company in the sector offering initial enzyme discovery through to annual production capacity, all in-house [ E5].

Without the specialist expertise of Northumbria researchers [ R1- R4], Prozomix would not have been able to secure participation in its first EU FP7 grant, KYROBIO (2011-2015), success in which led the company to participate in five further Horizon 2020 projects, with grant income totalling [text removed for publication] [ E1]. Additional evidence of the importance of the relationship between Prozomix and Northumbria University is the rapid creation of a highly experienced company workforce, through employment of PhD level scientists trained at Northumbria University [ E1].

Beyond Prozomix operations, Northumbria’s green chemistry research has benefitted users of the products and wider society. A Prozomix customer, [text removed for publication], was able to identify a transaminase enzyme from a Northumbria sequenced metagenome, which is now used to manufacture weed suppressant [ E5]. In 2020, [text removed for publication] acquired this enzyme from [text removed for publication] for a process that will produce 25,000 tons of material [ E7]. The new transaminase enzyme makes the product significantly more efficient, reducing the amount of material that farmers need to apply to control weeds by up to 50%, which will substantially reduce operating costs and environmental impact and thus improve the sustainability of the weed control process [ E7]. Finally, numerous recent enzyme hits have been identified by Prozomix pharmaceutical clients for use in the manufacture of drugs against COVID-19. These KRED hits were mined from metagenomic data sequenced by Northumbria, identified through the clients’ use of kREDy-to-go^TM screening [ E5].

Overall, Prozomix confirms [ E1, E5] that, without Black and colleagues, the company would not have been able to secure such an excellent reputation, market position and turnover [text removed for publication] in such a short period of time. Prozomix acknowledges that the relationship with Northumbria University has been invaluable in driving their strategy, in developing their network of contacts, supplying the company with new talent, helping to develop new in-house techniques, and supporting their knowledge and understanding of the enzyme discovery field from research. As Dr Ruth Lloyd, the Operations Director, noted: ‘I can absolutely affirm that our commanding strategic technical position and well-respected global brand would not have been achieved without the support from the Black Group and others at Northumbria’ [ E5].

The development of the Enhanced Care of Older People (EnCOP) Workforce Competency Framework (WCF) for caring for older people by Thompson and Tiplady has led to (i) improved competency of the workforce (ii) improved competency of the future workforce, stimulating interest in nursing careers in this sector, and (iii) improved outcomes for older people.

4.1 Improved competency of the current workforce

As a direct result of the research recommendations, two full-time (FTE: 2) EnCOP Strategic Workforce Development Leads for Older People have been employed to deliver the research recommendations regarding workforce capabilities across the North East and North Cumbria. The posts, funded by the North East and North Cumbria Workforce Transformation and Strategy Board [ E1, E2], were recruited by NGCCG in partnership with the Academic Health Science Network (which hosts the Ageing Well regional group, tasked with scaling the EHCH programme). Other partners include six NHS Trusts, a home care provider, and a local authority. The posts were recruited to in April 2020, with appointments postponed to September 2020 as a consequence of the coronavirus pandemic. The Strategic Leads drive the implementation of the WCF and facilitate EnCOP workforce development. For example, they ensure EnCOP is delivered effectively through the development of appropriate policies and monitoring of outcomes. In addition, two Clinical Quality Care Home Lead Nurses have been employed by NGCCG to develop the care home workforce along EnCOP lines (headcount: 2, FTE: 2) [ E1].

The identification of priority areas for workforce development has also informed and helped to shape masterclasses (funded by Health Education England) for health and social care staff who work with older people. To date, six have taken place, with 90 participants comprising care home managers, care home staff, and NHS staff from elderly care wards. Written feedback from participants demonstrated that these masterclasses have had a direct impact on the healthcare practice of attendees. For example, a regional manager from a care home provider company confirmed: ‘those attending [from our company] felt they had a much greater understanding of sepsis / delirium which would benefit clinical decisions on the front line’ [ E3]. As a result of the masterclass, key changes to communication, baseline observations, and frailty policy and practice are being implemented by this company [ E3].

4.2 Improved competency of the future workforce

To date, 21 senior (third year) nursing students have completed the internship devised by Northumbria [ R4; E4, p7]. Students are based in a care home but work with the NHS at strategic and frontline levels. The internship model has since been adopted by the five NHS Trusts and four CCGs providing placements for Northumbria University students (Northumberland, Newcastle, Gateshead, Sunderland, and South Tyneside), as well as East Lancashire and Leeds North CCGs [ E4, p7]. Evaluation showed students had enhanced their knowledge and understanding of multimorbidity, frailty, and dementia, and the complexity of care needed to manage people with these conditions; and developed skills and confidence in autonomous working, leading and managing care delivery, as well as enhanced understanding of the complexities of the integrated health and social care sector [ E5, p3]. It also showed improved inter-organisational working and learning for staff, as well as students. The internship programme was awarded a Cavell Nurse Star Award in 2019 for services to older people’s care [ E6]. One Northumbria student was shortlisted for the Royal College of Nursing’s student nurse of the year award for 2019 because of her engagement with the internship [ E6], going on to join the steering committee of the Royal College of Nursing (RCN) Older People’s Nursing Forum.

As a result of this success, care home placements are now also offered to first and second year nursing students on the course. To date, 90 care homes have provided placements for 1,009 students, and 107 GP practices have provided placements for 1,125 students who would not have otherwise worked in this sector [ E4]. The Clinical Quality Lead for North Tyneside Clinical Commissioning Group has confirmed that the internship and subsequent placements have helped care home nurses ‘raise standards of care and increase the number of mentors available within the care home setting’ while the internships have ‘helped with staff recruitment and retention into this area of nursing practice [ E7, p1] . This led to the decision to employ a Practice Supervisor to support learners in their placements [ E7, p2].

Student nursing in this sector has also been enhanced by the SUPER project, which has advanced student understanding of person-centred integrated care for older people. To date, 2,000 students have used the SUPER model and been exposed to the health, social, and transition care needs of older people [ E8, p1] . A study exploring the experiences of older service-users and students of SUPER and a testimony from Equal Arts, which supports the wellbeing initiative of SUPER, reported that it has been effective and had a lasting impact on students’ attitudes to caring for older people, leading to positive change to their practice, and impacting on career choices [ E8]. Feedback from past students regarding the wellbeing initiative aspect of the SUPER project includes : ‘[This is] the reason I became interested in caring for older people and why I do the job I do now [older people’s nurse]’ and ‘[Older people] came to Northumbria Uni when I was in my second year of nursing. It’s a lecture I’ll never forget, and I’ve been a qualified nurse for four and a half years now’ [ E8, p8].

4.3 Improved outcomes for older people

The study explored the experiences of service-users as well as students participating in SUPER [ E8, E9]. SUPER enhanced quality of life for older service-users as it provided them with opportunities to contribute to improved care practices, a sense of purpose, and promoted their feelings of being included and being valued by society. One SUPER service-user participant said: ‘[It gives] the chance to try and influence the way that students are taught and put things right … When I was 65, I didn’t want to stop working. I had to. It’s nice that I don’t have to stop working. I can get up and come and do things. It’s the fact that you’re putting something back, you know. And you are acknowledged as doing that, and people appreciate what you do’ [ E9, p4-5].

In addition to these direct benefits, NGCCG has confirmed that research provided by Northumbria University during the evaluation of the EHCH programme ‘massively supported our approach and influenced the development of the care pathways without doubt’ [ E10]. The implementation of these new care pathways and local systems have led to improvements in key metrics regarding the care of older people living in care homes, including decreases in 999 calls, decrease in A&E attendance, fewer non-elective admissions (34.7% for urinary infections and 16.6% for chest infections), and a reduction of GBP41,000 in spending on low-dose antipsychotics [ E10].

Northumbria’s Healthy Living Lab (HLL) research has been instrumental in shaping the UK Government’s Holiday Activities and Food (HAF) programme and its delivery through over 280 holiday club partners. The research has (i) underpinned a series of funding decisions by the Department for Education (DfE), supporting the delivery of healthy food and activities across England, (ii) informed the expansion of the HAF programme to all of England, with an increase in budget to GBP220,000,000, and (iii) enabled delivery organisations to improve the health and experiences of children and families living in poverty over the holiday period.

4.1 Informing the creation and expansion of the (HAF) programme

Research highlighting the problems of food insecurity, and the role of out of school clubs in mitigating this, played a key role in Government setting up and funding HAF clubs. In 2015, Kellogg’s issued a report using HLL research, ‘Isolation and Hunger’ [ E1a], that was sent to all 650 MPs, including those on the All-Party Parliamentary Group (APPG) on Hunger [ E2]. The findings were subsequently highlighted in a report by the APPG’s holiday hunger task force, which together enabled policymakers at Westminster to gain a detailed understanding of the scale of need and the important role that holiday provision schemes play [ E1b]. The Chair of the APPG, Frank Field, MP, singled the research out as not only bringing the urgent issue of Holiday Hunger to mainstream attention [ E3a], but also ‘as transforming how policy makers …understand and promote the function of holiday food clubs’ [ E2].

Civil society organisations also used the research evidence to pressurise the Government, such as an extensive follow-up report published in December 2017 by Feeding Britain, an influential hunger charity chaired by the Archbishop of Canterbury [ E3b]. Frank Field MP used the research to introduce a Private Members’ Bill, ‘The School Holidays (Meals and Activities) Bill’ which would have placed a duty on local authorities to ensure disadvantaged children had access to food in the holidays. Once the Government committed to a major new holiday programmes initiative, the Bill was withdrawn [ E4; E5, p12-15].

The DfE has acknowledged the contribution of HLL’s work on health and other outcomes for children, parents, organisations and communities. Matthew Chappell, DfE Team Lead on the HAF programme stated:

These papers helped to inform the Department’s awareness about the need, provision, and rapid expansion of school holiday programmes operating across England. This, in turn, has resulted in a series of developments that together represent a transformation in strategic thinking and policy with regards to ensuring children have access to healthy, nutritious food, physical and enriching activities that improve children’s overall wellbeing over the school holidays, and provide important childcare support to working parents [ E4].

These advocacy initiatives and policy developments, which relied on HLL research, underpinned the Governments’ decision to commit GBP2,000,000 to fund a series of HAF pilot schemes during the summer of 2018, supporting organisations to deliver healthy food and activities to children living in some of the most disadvantaged areas of England [ E4]. This provision was distributed via 280 clubs and reached more than 18,000 children [ E4]. The original pilot scheme was later extended with further investment of GBP9,100,000 to support 50,000 children across the school summer holidays in 2019, with the DfE again allocating the same level of funding for HAF delivery in 2020, totalling GBP20,400,000 [ E4]. As the DfE noted, the ‘successful, and arguably life-changing policy and funding initiatives [HAF programme] , are in no small part a direct result of the vital contribution that Northumbria’s research made during the development of the HAF programme’ [ E4].

4.2 Shaping long-term allocation of resources by DfE for holiday provision

During the COVID-19 pandemic, public concerns around the issue of child hunger grew, informed by the efforts of a civil society coalition, End Child Food Poverty, led by footballer Marcus Rashford. The Executive Director of the Food Foundation explained that HLL research had underpinned the National Food Strategy. This came from an independent review commissioned by Government to set out a vision and a plan for a better food system [ E6a]. The 2^nd recommendation outlined in the report, was to ‘extend the Holiday Activity and Food Programme to all areas in England, so that summer holiday support is available to all children in receipt of free school meals’ [ E6a]. The End Child Food Poverty campaign worked to implement this and ‘the civil society consortium drew on her [Defeyter’s] evidence to inform their policy position and ensure their advocacy strategy was evidence-based’ [ E6b].

In March 2020, the HLL co-hosted an event in Westminster with the charity Feeding Britain that was attended by senior representatives from the DfE, the Department of Work & Pensions, and key stakeholders from the third sector [ E4]. The DfE noted that a key objective of the event ‘was to draw upon the research expertise of the HLL (and knowledge gathered on the back of the initial pilot schemes) to deliver a “design sprint” that would generate a range of co-created and co-produced delivery and funding frameworks’ [ E4]. Following this event, Defeyter produced a new paper for the DfE that focused on the development of four possible frameworks that could guide the future provision of meals, childcare, and activities for children during school holidays. The DfE confirmed how the findings enabled it to consolidate existing knowledge, expertise, and practical experience, ‘ and supported …their thinking concerning the expansion of the HAF programme to the whole of England’ [ E4].

The combination of HLL’s research contribution to Government reviews, civil society advocacy, and parliamentary process was instrumental in the announcement by the Government in November 2020 of the expansion of the HAF programme to the whole of England in 2021, at a cost of GBP220,000,000 [ E4]. As noted by MP Frank Field, in the six years since holiday hunger became a major political issue: ‘the demonstrable benefits the new policy has had for thousands of families throughout the UK, is testament to the strength and importance of the research [carried out by the HLL]’ [ E2]. The expansion of the service means that an estimated 1,100,000 disadvantaged children can now benefit [ E6a, p2].

4.3 Mitigating food insecurity among families from disadvantaged backgrounds

The benefits of policies that have been informed by HLL research can be seen in positive results at a grassroots level. In 2015, Kellogg’s acknowledged that research findings on food insecurity, the social and behavioural benefits of holiday clubs, and the optimum model for clubs identified in the research were the foundations of its holiday breakfast club model rolled out in London and Manchester [ E1a, p11].

A further example can be seen with Kitchen Social (KS), the largest provider of food for children in London during the school holidays, reaching more than 5,000 children across 24 London boroughs [ E7a]. After hearing about HLL’s research in Parliament and during the Hungry Holidays Inquiry, KS requested assistance from Northumbria to assess its implementation of, and how it produces, social change [ E7b]. The two-year process evaluation included interviews with holiday club staff, attendees, parents/caregivers and senior stakeholders (published in April 2020 by KS in a comprehensive evaluation report) [ E7b]. Findings highlighted the significance of the impact of KS:

‘My family were having difficulties with money, so at school I had to give up going to trips and couldn’t really buy my own food. It was really hard, and we didn’t really have much food at home either. So, places like this are just really important for kids who are having difficult times with money’ [Child participant, E7b, p2]

‘It’s good to see my children making new friends, being active and eating healthy food …the programme also helped us as a family. Not only did it give me some much needed free time but it has impacted positively of the family budget’ [Parent participant, E7a, p2]

The Head of Social Inclusion at KS confirmed the HLL research ‘played a significant role in the development, implementation, and refinement of [KS programme] resulting in improved, positive outcomes for hundreds of children, parents, and communities’ [ E7b]. The research evaluation for example, identified a problem with the food supply model used by KS, which enabled them ‘to quickly rectify this issue, resulting in an improved delivery model and better dietary outcomes for children’ [ E7b].

Similar results have been achieved with other HAF partners, including the StreetGames UK initiative, a national sports charity. The Chief Executive noted how the research ‘inspired us to develop Fit & Fed – a new way of delivering sport and physical activity which would include the provision of food … during school holidays’ [ E8]. Launched in the summer of 2017, this national programme grew to support 19,839 young people by the 2019 summer holidays [ E8], serving approximately 100,000 meals. The HLL team have been praised for their ‘rare and valuable combination of the ability to blend academic rigour, knowledge and expertise with significant levels of professional empathy and understanding of the lives and circumstances of some of nation’s poorest children, young people and families’ [ E8].

Research by The Northern Hub for Veterans and Military Families has led to better resource allocation and service delivery for UK military civilians. In addition, specific substance abuse and social isolation provision has been enhanced across the UK, resulting in more effective and appropriate interventions.

4.1 Improving service access, strategy, and delivery through the Map of Need

In response to the failures in service provision and the barriers to accessing services found within the research [ R2- R5], Northumbria created the only digital, UK-wide directory of services through collaboration with the devolved governments, NHS, and other key national bodies - known as the Veterans Gateway Mobile Application and Local Support website (VG; https://www.veteransgateway.org.uk/local-support/). The VG enables veterans and their families to identify appropriate service provision in their local area, from a database of 16,800 quality-assured service delivery points in the UK. The impact arising from this database is twofold: 1) it helps the Armed Forces community to access the support required, and 2) it gives service providers the information necessary to ensure demand is met and supports the adequate allocation of resources. These data-driven improvements to service provision are part of an overarching project referred to as the ‘Map of Need’ (MoN). The Ministry of Defence (MoD) commissioned the Northumbria team ( G1: GBP1,386,431) to create the national MoN for the sector, based on secondary data analysis from the VG and the innovative methodology developed by the team [ R1].

In terms of services for the community, the MoN project delivers a ground-breaking, international software solution to connect veterans with services, accessible through a UK Government website and mobile app hosted by the Royal British Legion (RBL) [ E1]. The VG comprises a 24-7 staffed contact centre, an informative website, and many channels of access – including email, postal mail, UK freephone, social media and live chat [ E1]. The geolocation capability of the software is the first of its kind specific to mapping veteran services online at a national, rather than local, level, as is attested to by Mark Collins, CEO of Poppyscotland:

‘[Northumbria University’s work on the VG] has delivered a military charity sector ‘first’ in terms of the UK-wide App, available for free …that is gaining usage and providing users from within the Armed Forces community with swift access to the services they seek via a simple to use mapping engine [… Without the VG] it would have been very difficult to clearly identify who required what support in what geographical area… as time has passed Northumbria University have developed an evidence based data set […that] informs statutory and charity organisations of where need really is’ [ E2].

As Collins states, the number of searches on the VG has risen consistently since it was established in November 2018. During 2020, there were a total of 20,523 individual searches for services, up from 12,332 the previous year, of which ~5% were from users located overseas (or with a null location) [ E3, p4]. ‘Mental Wellbeing’, ‘Housing’, and ‘Employment’ were the most searched of the 11 social service topics [ E3, p6]. Helen Helliwell, Chair of the Board of Trustees at the Armed Forces Covenant Fund (AFCFT) praises the VG directory for greatly improving access to the support required by veterans and their families [ E4]. The VG also received recognition from the media, with ITV News covering the release of the app to the public (aired May 2020) [ E5]. Within this, Sgt Tom Ripley, Welfare Officer at Catterick Garrison praised the app for providing support ‘ in the comfort and security of your own home […and giving] anonymity’, as he recognises that having to seek support face-to-face can act as a barrier, as individuals, particularly men, ‘can find that embarrassing’ [ E5] .

MoN findings are being used to inform funding strategies and service providers comprehension of UK veterans service use [ E4]. Monthly usage reports, highlighting hotspots and resource need, are sent to funders and key stakeholders including the MoD, Office of Veteran’s Affairs, and the RBL [ E4]. In this way, the MoN project has led to the first, large-scale data-sharing effort among armed service charities [ E4]. Helliwell, Chair of the Board of Trustees at AFCFT, an organisation tasked with dispersing GBP10,000,000 per year to support health and wellbeing among armed forces families and veterans, acknowledges the value of Northumbria’s work, stating:

‘[By using data from the MoN] services are able to more effectively develop their policies towards enhanced support, targeted delivery to improve operational practices on the front-lines and make cost-saving decisions on resource-planning which in turn enables the allocation of more funds to be directed at essential care services’ [ E4].

Similarly, Sailors Soldiers Air Force Association (SSAFA) – a military charity with 5,000 volunteers who provide physical and emotional care to 85,000 individuals – has used the MoN ‘ to target resources, recruitment and training strategy, ensuring that we have been able to respond to the growing need in key areas and focus our volunteer network on how they need to respond’, which benefits members of the armed forces community UK-wide [ E6].

4.2 Improving practice to support veterans

Northumbria’s research has enhanced understanding of veteran specific support needs and experiences, which has directly influenced the improvement of support services. For example, Sunderland City Council (SCC) commissioned a new, co-produced veteran specific model of care, which is set within the health and social care pathway [ E7]. Since its implementation in 2018, this new service has benefitted the local veteran population by improving accessibility and inclusivity of services and their care pathways [ E7]. Ben Seale, Public Health Lead at SCC attests to this, stating ‘We have seen the degree and manner with which veterans engage with our services become much more effective, and the collaborative method developed by Northumbria research has greatly improved the practices of our service providers’ [ E7]. This success was such that the model has been shared across regional services beyond veteran support to ‘enhance service delivery across multi-disciplinary service networks regionally’ [ E7].

Northumbria’s research also highlighted a lack of understanding among NHS staff regarding the unique needs of veterans, insight which has since been used to make improvements to services through two prominent trusts based in the North of England: the Cumbria, Northumberland, Tyne and Wear (CNTW) NHS Foundation Trust, and the Tees, Esk, and Wear Valley NHS Foundation Trust. In addition to supporting the development of a veteran-delivered education programme attended by 200 members of clinical staff, which improved awareness and understanding of the ‘ unique care and support needs of veterans’ [ E8], collaboration between CNTW Foundation Trust, Northumbria and veterans resulted in the development of a new model of veteran care, entitled ‘Hub and Spoke’ [ E8]. Simon Douglas, Director of Research, Innovation and Clinical Effectiveness for the Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust states that there are clear care and finance related benefits of this programme:

[Cost savings made through Hub and Spoke] can be re-purposed to deliver improved and more sustained care to veterans […and] giving them a voice in their care plans and delivery results in fewer veterans leaving care and becoming more vulnerable to alcohol and substance misuse, and other potential dangers to their mental health and wellbeing’ [ E8].

Further to this, findings from Northumbria’s research, most notably the unique circumstances of social isolation and loneliness among veterans, inspired the development of a Good Practice Guide for the RBL (a key financial, social, and emotional support service for veterans) - a document now used across all RBL branches in the UK (2,500+) [ E9]. The guide, authored by Northumbria, covers three key areas, vital to supporting the Branch Community Support (BCS) programme, relating to embedding principles into the wider community, knowing your customers, and information sharing. Jane Britton, Area Manager RBL, notes that this document is ‘fundamental in building a national understanding, across all Royal British Legion branches, of the role BCS activities play in alleviating social isolation and loneliness’ [ E9]. To ensure successful implementation and management of the BCS, RBL have employed a dedicated BCS Lead worker [ E9]. This research has also influenced the practice of the AFCFT, the leading Armed Forces Grant provider, who have used Northumbria’s research to inform funding decisions, including the allocation of GBP5,500,000 to the Reducing Isolation in the Veterans and Armed Forces Community grant programme, which is now benefitting veterans and military families across the UK [ E10].

This research has led to three key impacts. 1) It has created and rolled-out integrated service pathways between health, social care and housing for older people in sheltered and general housing, resulting in improved outcomes, including enabling older people to live independently in their own homes [ E1, E2]. 2) It has contributed to securing outline planning permission for a national test-bed garden village in County Durham. The approved scheme has underpinning principles of integrated health and social care to support householders to age-in-place and to optimise their wellbeing through prevention and enablement [ E3, E4]. 3) The research has also directly informed housing policy on a regional level in relation to integrated older people’s health and care services and housing across the combined authority of North of Tyne (population ~820,000 [20% 65+], ONS 2020) [ E5] and contributed to national policy debates on housing for older people [ E6, p73].

4.1 Integrated care practice improvements: Sheltered and private housing

The KTP with NTC was graded as ‘outstanding’ and recognised by awards from a number of regional and national bodies [ E1]. It established new procedures for data collection and analysis [ R1, R3] which have underpinned the roll-out of three integrated housing, health and social care service improvements. The first enabled direct referral of tenants from NTC’s sheltered housing officers to NHS community multidisciplinary teams. This resulted in older tenants being treated in their own homes within 2 hours instead of having to access NHS primary care or experience long waits for treatment by emergency services. In 2014, analysis of this new care pathway was shown to lead to a 60% reduction in non-elective admission to hospital and treatment by primary care [ E1]. This success meant that the service, which began in three sites, has been extended and made standard across all of the Borough’s service (26 sites).

In recognition of the high incidence of falls by sheltered housing tenants, identified through the HNA [ R1], the “healthy living falls prevention programme” was the second improvement established during the KTP. This has been delivered in sheltered housing schemes by NHS professionals, leading to improvements in balance and gait, which result in improved wellbeing [ E7]. As a consequence, this programme is now integral to the North Tyneside’s multisector falls pathway [ E1, E8].

These innovative approaches to integrating health and care services with housing to address falls within the older population have led to the development of a third service. Eleanor Binks, Senior Manager (Integration, Transformation and Social Care, NTC), stated ‘Involvement in the NTC/NU KTP influenced the decision to collaborate with North East Ambulance service…[in piloting]…an alternative response to ambulance in the event of a non-injurious fall’ [ E1]. Consequently, NTC now collaborates with the North East Ambulance service, with North Tyneside’s Care Call service responding to calls that are triaged through the 111/999 system as ‘non-injurious falls’ (46% of all calls for patients over 65 who have fallen). This alternative response service has reduced ‘long-lies’ and has, in turn, led to an 83% reduction in admission to hospital for non-injurious fallers over 65 [ E1, E8]. In 2018, this alternative response to ambulance service received recognition in the MJ (Municipal Journal, the management journal for local authority business) Achievement Awards [ E1, E8] and has subsequently been rolled out to five localities in Northern England [ E1] (County Durham [excluding Darlington], Gateshead, Hartlepool, Newcastle, Stockton-on-Tees and Sunderland). These collective approaches to early intervention enable older people to live independently in their own homes rather than move to long term care environments. By 2015 the KTP-driven changes in service delivery led to an estimated cost saving of GBP620,018 from the public services budget for long term care, and maximising of rental income to NTC through tenants remaining in their sheltered housing accommodation [ E9, p5].

The KTP research demonstrated how early intervention and integrated care services can help reduce urgent and emergency admission to hospital and improve outcomes. In response, and building on the sheltered housing referral pathways, a Safe and Healthy Homes (SHH) service was established in 2015 for older and disabled residents living in private housing [ E1, E2]. This new service adopted the core principles of integrated health, care services and housing that were produced during the KTP. This facilitated home improvements for those with housing issues exacerbating or causing health problems, as well as providing rehabilitation and early interventions by health and care services [ E1].

SHH is available across North Tyneside to older and disabled people, and during the period 2014-2019 an estimated 2.2% of households in the Borough used the service (N=1,855) [ E1]. The service addressed health-related housing issues such as cold (22%), damp and mould (18%), the removal of home hazards (38%) or electrical or heating issues (26%) [ E1, E2]. As well as home improvements, SHH staff also refer to a range of health and wellbeing services resulting in transformational living conditions for some clients:

‘Ms F’s concerns about falls and cold have been reduced, and she now has more opportunity to engage in the community and become more active. In her review questionnaire, the client claimed that she had felt suicidal before the team’s involvement and stated that her Safe and Healthy Homes Officer saved her life’ [ E7, p11].

SHH interventions are estimated to have prevented falls for 18% of people referred to the service [ E1].

4.2 Impact on alternative housing options for older people

Those involved with housing planning have not traditionally worked in collaboration with health and social care services during planning applications. IDpartnership (architect) and Plan B (social housing consortium) drew on the outcomes of the KTP and learning from the pilot interventions and research to include prevention and enablement features and services in the design of a village outline planning application (South Seaham) [ E3, p54, p72; E4]. The proposed 1,500-household village includes: a health and wellbeing hub, with the potential to link the village digitally with primary and community care services; indoor/outdoor space and walkways to promote physical activity to reduce falls; 5G on-site to support use of telehealthcare and the inclusion of adaptable homes.

Outline planning permission was obtained from Durham County Council in November 2018 for South Seaham, and it was also granted ‘Garden Village’ status by the Government in 2019 [ E3, E4]. Since outline planning was granted, Northumbria researchers have worked with the master planners to embed the principles of integration of housing with health and care in this village. Funding has been secured from the Innovate UK healthy ageing catalyst to co-design (with older people, health and care professionals) seven experimental homes to provide prototypes of adaptable, connected (with health and care services) homes, for future development in the village. Northumbria researchers continue to work with the master planners to embed the principles of integration of housing with health and care in this village, with construction due to start in 2021 [ E4].

4.3 Impact on public policy

The North of Tyne devolved authority is a partnership of three local authorities: Newcastle, North Tyneside, and Northumberland. The Combined Authority Housing and Land Board seeks to drive forward the accelerated delivery of new homes to improve the housing offer in the North of Tyne area. The KTP outcomes were cited as evidence for integrated housing, health and care within the accelerated delivery model, and have informed the Innovation Plan for the Combined Authority with respect to housing for an ageing population [ E5, p16, p23, p59].

The Centre for Ageing Better creates change in policy and practice informed by evidence, working with partner organisations across England. It aims to improve employment, housing, health and communities as part of the Government’s “What Works Network”. The Centre drew on Northumbria research [ R5] as part of their evidence that increased central spending on the disabled facilities grant by GBP55,000,000 from 2017/19 and a further 8% [ E10] (GBP37,000,000) to a final total of GBP505,000,000 in 2019/20. The additional funds have enabled councils across the UK to invest in home adaptations for older and disabled people (e.g., GBP500,000 in Milton Keynes) [ E10]. Northumbria’s research was also cited as evidence in a House of Commons report on housing for older people [ E6, p73].

While the initial KTP research was focused in one locality in sheltered housing services, the underlying principles have led to new ideas that have had a direct impact on the services that older people, living in all tenures of housing, can now access across the region. Subsequently this has expanded into the policy and practice of housing developers, influencing how they work with health and care services, and also steering housing policy makers in how they serve the needs of this population [ E4].

The Northumbria research ‘ directly informed’ an ‘ innovative and evidence-based PBS WFD model’ for the North East and Cumbria [ E1], which is home to over 25,000 employees within 19 local authorities, 3 large hospital trusts, many independent service provider organisations and other stakeholders, supporting approximately 65,000 people with learning difficulties and their families. The impact is manifest in 1) the implementation of PBS WFD across the region, leading to strategic and structural improvements; 2) an accredited educational provision; and 3) improvements in the lives of people with learning difficulties and/or autism and their families.

4.1 Implementation of PBS WFD: Strategic and Structural Improvements

Northumbria’s WFD for upskilling the workforce in PBS [ R1], approved by the Government’s Transforming Care Board [ E2, p2] in 2016, has informed regional strategy in NHS England and HEE for the North East and Cumbria. Judith Thompson (Network Lead for North East and Cumbria Learning Disability Network, NHS) and Charlotte Carr (Learning Disability Workforce Specialist, HEE) note that ‘the research was unique in adopting a systemic, multi-component approach… to increase and sustain workforce competence in PBS in the region, in a manner that could be grown at scale’ [ E1, p1]. This WFD programme was delivered through the 2017 North East and Cumbria Learning Disability and Autism Workforce Strategy [ E1; E3, p8].

Key to the delivery of this strategy was a restructure of the WFD staffing framework, including the creation of new clinical leaders (headcount: 3) and PBS Senior Clinical trainers (headcount: 2) [ E1, p2]. The three new WFD clinical leadership positions are strategic roles to implement and manage the regional infrastructure to support practice-based learning [ E1, p2]. Moreover, this strategy established a workplace culture more enabling of WFD through the creation of the North East and Cumbria PBS Community of Practice, made up of PBS practitioners, stakeholders, and family carers, to provide a virtual space to make resources accessible and share best practice [ E1, p2; E3, p8; E4, p13]. The new environment was supported by new values-based interviewing to appoint staff and resilience training to help staff deal with the stress of supporting people with BtC [ E1, p3]. The managers also established the requirement for including staff competence in PBS in commissioning specifications [ E1, p2]. The two new PBS Senior Clinical Trainers were appointed to deliver a programme of PBS awareness sessions across the North East and Cumbria region [ E1].

Northumbria’s recommendations to address high staff turnover [ R5] have been adopted by NHS England across the North East region to increase staff recruitment and retention in social care settings [ E1] and as a result of the system wide focus of the PBS WFD, organisations have embraced new ways of recruiting, supporting and managing staff, including the application of PBS principles to the staff team [ E1; E5; E6, p6], resulting in improved retention [ E4, p41]. Many organisations have ‘introduced new, or adapted existing, policies to make PBS a central component’ [ E6, p6] or changed the way in which poor staff performance was addressed and managed, for example, differences in ‘ things like disciplinaries and investigations because we are taking into account…whether we’ve provided them with everything that we could have for them to have been able to deal with that situation differently’ [ E6, p7]. These organisational changes have helped improve staff turnover, motivation and lower staff sickness levels [ E1; E4; p41, p47; E5; E6, p7].

4.2 Implementation of the PBS WFD: accredited educational provision and improved practice

Northumbria University were commissioned by the NHS to develop and deliver three new free-of-charge accredited programmes aligned with the 2015 PBS Competence Framework and competencies identified by the research [ R1]. 317 staff from 30 local and national social care organisations involved in the provision of support to people with learning disability and/or autism - including organisational practice leaders, practice facilitators who lead teams and support workers - completed the programmes between 2018-2020, and a further 60 NHS staff undertook the programme in 2020 [ E1, p2]. The programmes, delivered through a blended learning approach (face-to-face, online, practice-based learning, peer support) are based on a cascade model, whereby organisational leads (undertaking the ‘Leading PBS’ qualification) provide supervision and support to managerial staff (undertaking the ‘Facilitating PBS in teams’ qualification), who in turn provide support to front-line support staff (undertaking the ‘Competence in PBS’ qualification) [ E4, p13]. Participants of the training programmes were also supervised by the WFD clinical leaders [ E3, p8; E7, p5]. Thompson (NHS) and Carr (HEE) explained that ‘ The cascade model on which the programmes are explicitly built mean that the learning has benefited thousands of staff and people with a learning disability’ [ E1, p2]. In addition, 15 people completed a bespoke Post Graduate Certificate in Teaching and Learning in Professional Practice for NHS PBS specialists, developed and delivered by Northumbria in 2017, to enable participants to use best practice in evidence-based learning and teaching methods for adult education [ E1, p2; E3, p8].

As a result of participating in the PBS programmes, staff reported an increase in confidence and knowledge [ E1, p2; E5], with learning from the programmes directly relevant to practice [ E4, p7]. A programme participant reflected: ‘ The course was truly transformative. We thought we knew a lot about PBS, but we learnt so much more, all of which is completely translatable to the workplace. We have already noticed the difference what we have learnt is making within the organisation’ [ E8, p3]. The evaluation identified organisational changes implemented as a result of the programme, including introducing new or adapting existing policies to make PBS a central component [ E4, p37]. It also confirmed significant improvements in staff practice [ E4, p51]. Carr (HEE) noted : ‘the skills the people have learned have really empowered them to be able to offer a really, really good quality of support to people’ [ E9]. Improvements include reductions in restrictive and aversive approaches, such as physical intervention [ E5]. Thompson (NHS) and Carr (HEE) described: ‘ A significant shift towards staff viewing behaviours that challenge as learned behaviours (that can therefore be influenced by changing the person’s environment) rather than as being something inherent to the person’ [ E1, p3].

The PBS awareness-sessions run by the new PBS Senior Clinical Trainers have also had an impact on staff skills. 781 people from 102 different organisations from the community and voluntary sector, local authorities, NHS, police, Care Quality Commission, universities, and colleges [ E7, p5; E10, p2], and 16 family carers attended these free 3-hour sessions. Attendees appreciated the value of the content and noted that it was useful to apply in practice [ E10, p7-10]. One attendee commented that ‘This session gives staff an insight in how their behaviour has an impact on people we support’ [ E10, p9].

4.3 Improved lives for people with a learning disability/autism and their families

The creation of the PBS WFD programme has led to improvements in staff practice, which in turn benefits the people with a learning disability and/or autism who the staff are caring for [ E1]. The programme structure educated participants to change their practice and impacted the culture within organisations, which ultimately affects the lives of the people they work with. Carr (HEE) observed that ‘ Thousands of peoples’ lives have been touched in some way by this program’ [ E9, p3]. In their testimonial, Thompson and Carr comment that:

‘staff developed and implemented behaviour support plans that used positive, less restrictive approaches…[that are]…more person-centred and tailored to individual and developed in collaboration with them [leading to] improvements in quality of life of people with a learning disability, including increased and more meaningful contact with families and reductions in behaviours that challenge” [ E1, p2].

For example, a senior staff member commenting on the PBS programme was able to see the positive changes delivered through the new approaches as being responsible for ‘a 50 percent reduction in [challenging] behaviour, which is amazing’ [ E6, p8].

These improvements are, in part, because organisations are becoming better at engaging with families of people with BtC, involving them with interventions and reducing the BtC enough to allow families to engage in activities again. An example of a positive outcome of PBS on one individual was described by a programme participant: ‘He has choice, he has control, he has independence … because of this greater family input. He’s able to spend a lot of time at home with his family where that wasn’t possible before’ [ E4, p41].

Schwalbe’s research has made it more straightforward to identify medulloblastoma and classify the disease into its four major subgroups (WNT, SHH, Grp3 and Grp4). The assay developed for this classification can be used to support clinical practice, leading to improved treatment and better patient outcomes, ultimately reducing the burden on the NHS.

The four subgroups were only recognised by the World Health Organisation in 2016, which means that progress towards treatments relying on this classification is very recent. The MIMIC assay, underpinned by Northumbria’s research, enables clinically appropriate, rapid, robust, and economically viable identification of these four molecular subgroups by deploying Agena Bioscience’s Mass Array genetic testing system [ E1 DNA laboratory report confirms the use of MIMIC to classify Mass Array medulloblastoma data and refers to two publications by Schwalbe *et al.*], a technique previously used for assessing mutations in cancer samples.

The development of the MIMIC assay has changed practice by being adopted as a subgrouping assay for the Europe-wide PNET5 clinical trial (trial ID: NCT02066220) running from 2014 to 2024. This trial of standard-risk medulloblastoma is investigating whether WNT patients can be treated with lower-intensity therapies, aimed at minimising the side effects of treatment whilst maintaining the rate of cure. WNT patients enrolled in the trial receive a tailored and much-reduced dose of radiotherapy, at 18Gy instead of the current standard dose of 23Gy [ E2, p2]. Simon Bailey, Chair Elect of the International Paediatric Oncology group (SIOPE), which designed and implemented PNET5, has confirmed the MIMIC assay ‘has enabled the routine and rapid subgrouping of tumour samples’ [ E3]. This is because of its efficacy in analysis of small sample sizes and improved turnaround times, enabling real-time diagnosis [ E3].

Adoption through the PNET5 trial means that all of the medulloblastoma patients in Europe are reached. The Royal Victoria Infirmary Hospital at Newcastle coordinates samples from 11 centres in the UK. Since 2016, it has commissioned the MIMIC assay for 56 patient samples [ E4]. Since the assay is rapid, it is compatible with clinical decision-making. After surgical removal of the tumour, patients recover for 30 days before receiving chemo- and/or radiotherapy, and any molecular analysis needs to be completed within this time. The Great North Children’s Hospital in Newcastle upon Tyne is one of the major centres treating children with paediatric brain tumours in the UK. Simon Bailey, a Consultant in Paediatric Oncology at the hospital (who also serves as the chair of the SIOPE trial), stated:

‘These tailored therapies can only be achieved with real time molecular diagnostics. From a clinical perspective, the turnaround time of MIMIC is much more rapid than alternative assays (median 8 days) [and can be as little as three-to-four dates, compared to three-to-four weeks using previous methods] and allows real-time rather than retrospective decision making. The MIMIC assay has allowed clinically useful molecular subgrouping to be done robustly and rapidly, to aid treatment stratification and prognostication’ [ E3].

The implementation of the assay has enabled patients with WNT subgroup medulloblastoma – a group associated with a particularly good prognosis and survival rate – to be identified and stratified into the appropriate treatment arm of the PNET5 trial. This lessens the intensity of radiotherapy. In the UK, 20 patients have been classified with WNT tumours since 2016 and were deemed to be suitable candidates to receive reduced doses of radiotherapy [ E3]. Simon Bailey confirmed:

‘Lowering the dose of radiotherapy can lead to better patient quality of life post-treatment, so only giving a dosage that is required and no more can have huge benefits for the patient in terms of quality of life. These tailored therapies can only be achieved with real time molecular diagnostics … The PNET5 trial is still ongoing; however, it is important to mention that no excess relapse has so far been shown in patients with lower treatment doses, with lower incidences of neurocognitive deficits being seen. In short, the use of the assay has led, so far, to more appropriate treatment doses and better outcomes for patients’ [ E3] .

The MIMIC assay is delivered using Agena Bioscience’s Mass Array genetic testing system [ E5]. Since 2016, NewGene has used this system for subgrouping medulloblastoma in the UK [ E6]. NewGene is an NHS-accredited molecular diagnostics company. The company runs the assay to Good Clinical Laboratory Practice compliant standards for clinical samples and to a defined standard operating procedure. It also provides a clinical report in a standardised format which makes use of a classification web server developed for this project. This takes the test out of the lab and enables its use in clinical practice. Angela Silmon, The Operational Director of the Yorkshire and North East Genomic Laboratory Hub (GLH), said:

‘Dr Schwalbe wanted to develop and optimise an assay using this platform [Agena Bioscience’s Mass Array genetic testing system] for the routine classification of medulloblastoma molecular subgroups using characteristic DNA methylation signatures … Dr Schwalbe developed the algorithm to classify medulloblastoma samples into molecular sub-groups. We worked with Dr Schwalbe to optimise the assay and determine how to implement it clinically. As a result of this, it enabled NewGene to develop an expertise in a new method of detecting DNA methylation signatures without additional capital investment’ [ E6].

Since 2016, NewGene has performed [text removed for publication] tests at a price of [text removed for publication] per test, giving the company new income of [text removed for publication] [ E6]. The economic benefits of this price extend to the user too. For example, in Spain the previous test cost nearly twice as much as MIMIC (approximately [text removed for publication]) [ E7].

As a result of its use by the Yorkshire and North East Genomic Laboratory Hub (GLH) – an NHS service which has provided genetic analysis for inherited and acquired diseases since 2018 – the NewGene assay has become an NHS provision and elevated the profile of the GLH. Angela Silmon said: ‘This development provided the company with a competitive edge in the market and excellent international reputation and raises the profile of the Yorkshire and North East GLH. This would not have been possible without Northumbria University and Dr Ed Schwalbe’ [ E6].

The wider applicability of the assay to any disease characterised by differential DNA methylation patterns has resulted in training and knowledge exchange activities for European groups. These include the Karolinska Institute (Stockholm, Sweden) and the Leiden University Medical Centre (Netherlands), working in partnership on the development of equivalent assays.

Between August 2013-2017, over twenty-five performances of three iterations of Jack & Jill were given across the North East and nationally, including Edinburgh Fringe Festival and the Economic Social Research Council Social Science Festival, to over 1,500 participants including those living with dementia, carers, practitioners, policymakers and service providers [ E1, p29-31, p51-56]. A film was also made freely available. Similarly, between 2014 and 2020 three iterations of Doorbells toured nationally, the film version premiered in 2018 and a COVID-19 film short was produced in 2020. These performances have: 1) raised public and professional dementia-awareness, leading to changes in health promotion in Scottish Palliative Care and Stockton-on-Tees public health directorate; 2) led housing providers in England and older person advocacy groups to change their engagement strategies with older people, and 3) shaped the action plan and subsequent development of a new community dementia network of 34 local organisations in Newcastle, leading to new dementia-friendly practices and policies to create a more inclusive and enabling community environment for people living with dementia.

4.1 Increasing public and practitioner understanding of the lived experiences of dementia

Post-performance discussions and feedback revealed that audience members found Jack & Jill to be a powerful, poignant experience that changed their perceptions of dementia in the community [ E2, p10-16]. Comments not only highlighted the emotional nature of the work, with some noting they were ‘ emotionally wrung out’ or ‘ *completely overwhelm[ed]*’, but also demonstrated that individuals living with, or caring for, someone with dementia found the performance to be reflective of their experience and thus comforting. One individual noted ‘[it was] a relief to see your work and to hear others in the audience. I used to think this was only happening in our house’ [ E2, p10].

Persuaded by the power of the performance and its ability to increase public awareness of and response to dementia, public health bodies and local authorities commissioned Jack & Jill performances in order to improve their public health outreach and awareness raising strategies regarding dementia. Following one commission by Stockton-on-Tees Borough Council, Peter Kelly, Director of Public Health North East, noted that he would formerly have been ‘ *giving a presentation, probably with PowerPoint slides perhaps even alongside a local carer talking about their personal experience and a local GP or mental health professional giving their perspective and insight. What a mistake that would have been!*’ [ E3, p1]. Kelly explained how he would pursue ways to use ‘ the subject matter and also on other opportunities to use this, and other, forms of art in my work’ [ E3, p1].

This work included cooperation with Dementia Friendly Stockton, a community organisation working with local people and businesses to raise awareness about dementia. Gayle Tweed, the CEO, working with the local council commissioned a performance of Jack & Jill in 2014 to support ‘ businesses and organisations in each town to take low cost, easily achievable steps’ to become dementia friendly [ E4]. Notable successes include securing ‘ funding to upgrade their large day centre to become more dementia friendly’ and the creation of the LiveWell Dementia Hub, a ’one stop shop’ for people living with dementia and their carers to receive dementia advice from trained professionals and memory specialists [ E4]. She concluded that the performances had ‘ contributed to ensuring people have a better appreciation of the disease so the day-to-day challenges faced by families affected by dementia are made that little bit easier’ [ E4].

Mark Hazelwood, Chief Executive of Scottish Partnership for Palliative Care, saw the performance in 2014 and spoke of its powerful effect on him, confirming in 2020 that it gave him insights into dementia as a condition as well as showing the value of theatre in terms of public engagement, awareness raising and education: ‘Jack & Jill was really outstanding in its ability to convey powerfully something of the personal experience of dementia in a way which policy reports and even documentary films simply cannot’ [ E5].

4.2 Improving later life housing policy in the North East and across England

Northumbria’s creative co-productions have been effective in guiding dementia-aware policies with housing providers in England. In 2014, North Tyneside Homes convened dementia-friendly sessions with both Skimstone Arts and Northumbria staff. Linda Herman, North Tyneside Living Service Manager, confirms that Jack & Jill changed her ‘ awareness of the implications of dementia’ for both those living with it and the families, and:

‘North Tyneside Living Service has now become an enabling service that is proactive and focused on assisting older people and those living with Dementia… [a]ll Local Authority Sheltered Housing Schemes in North Tyneside have now become Dementia Friendly Communities through the joint work with our University Colleagues [ … and] support [for] Housing Officers has been introduced providing them with information and skills needed for them to carry out information sessions with tenants, families, friends, local shops and business’ [ E6].

This work continued with ECoN, an advocacy and policy group funded by Newcastle City Council and Newcastle’s Clinical Commissioning Groups to place older persons’ issues and views at the heart of local policy. Inspired by attending a Jack & Jill performance in 2014, ECoN began using creative arts to deliver public engagement events and develop policy [ E7]. As Barbara Douglas, Executive Officer of ECoN, explains, ‘ our engagement with using the arts (in particular drama) stems from our participation as audience in the inaugural performance of “Jack and Jill and the Red Postbox”’ [ E7]. In 2014, ECoN acted on this to ‘ develop a new project around later life housing decisions… using the engagement with the arts at its core’ [ E7]. This new method was ‘ the missing piece of the jigsaw’ in their engagement and policy development approach and led to them commissioning participatory creative workshops through which older people were able to share their experiences, and to support two artist residencies working with older people’s health concerns and communication skills [ E7]. This led to ECoN’s participation in Doorbells, which is already having an impact at a strategic level. Douglas explains, ‘ this project activity is enabling the Elders Council to use the evidence we are gathering as the basis of discussions with Newcastle City Council and housing providers… to challenge the current housing offer and its appropriateness for an ageing demographic’ [ E7].

CRE, an independent charity operating nationally since 1986 to improve housing and related services for older people to live independently, have also directly benefitted from Northumbria’s performance-led engagement method [ E8]. Sue Adams, Chief Executive Officer of CRE, says that the value of Doorbells was that it ‘ set out to particularly engage with groups of people that may be left out of later life housing and ageing discussions, such as those ageing without children, living alone and/or having primary caring responsibilities, but then, interestingly, the production also attracted intergenerational audiences’ [ E8]. As a result, working on Doorbells is ‘ opening up a conversation with the Local Authority around their policies and thinking about housing for a diverse ageing population. A group of older people who have worked in the creative sector all their lives, hence have low pensions who were more likely to live in private rented sector [PRS] homes are now working with a Housing Association, and they are looking at sites where it might be possible to build an innovative, new later life community of older artists, many ageing without children’ [ E8].

4.3 Creating a more dementia-friendly community by forming the Jesmond Dementia Action Alliance

The research and co-production-driven insights of Jack & Jill inspired the Jesmond Dementia Action Alliance (JDAA) and shaped the development of the action plan for a Jesmond Dementia Friendly community and its subsequent expansion into a network of 34 local organisations and businesses committed to raising awareness and creating a dementia-friendly environment [ E9]. Felicity Mendelson, Newcastle City Counsellor and Chair of the JDAA, explained, ‘ seeing this performance and understanding its powerful impact on the audience was a catalyst for the group to formally work towards a Jesmond Dementia Friendly community’ [ E9, p1]. This new Jesmond-based franchise of a national organisation, the Dementia Action Alliance, used ‘audience feedback from the Jack and Jill performance to begin to form and agree [an] action plan’ [ E9, p1]. Mendelson credits the performance as the basis for their operations by demonstrating ‘ how we could reach out to individuals, organisations and business in the area to increase understanding of dementia and take positive steps/ action that enables people living with dementia to continue to be active and independent citizens’ [ E9, p1]. Between 2015 and 2019, the JDAA have been able to support dementia friendly training for approximately 600 Jesmond residents and workforces located in the area, including retail, dental, health, leisure, solicitors, and other local services and businesses.