Awardee: Dr Nicola Mills (University of Bristol)

Background

Neurodevelopmental (ND) conditions refer to a group of childhood-onset conditions that result from disrupted brain development/function and impact a person’s functioning in one or more domains of life. Including conditions such as autism spectrum disorder, intellectual disability and attention-deficit hyperactivity disorder. Co-morbidity, the co-existence of two or more medical conditions, is common for neurodiverse people. Studies have highlighted higher mental health conditions and premature mortality in people with ND conditions compared with the general population. Despite this recognition, there are extensive unmet mental and physical health care needs for this underserved population. 

Effective care requires a strong evidence-base from robust studies. Randomised Controlled Trials (RCTs) are the gold standard research design to evaluate the effectiveness of healthcare interventions. However, most existing RCTs for people with ND conditions are based on relatively small numbers of participants, which limits the power of the study and reliability of findings. 

The Qualitative research integrated within Trials (QuinteT) research team at the University of Bristol specialises in methodological and applied research to optimise recruitment to challenging RCTs. Over the course of 20 years they have identified clear obstacles and hidden challenges to recruitment across a variety of clinical fields, and developed strategies to address them. The team have recently worked alongside the National Institute for Health and Care Research (NIHR) Bristol Biomedical Research Centre (BRC) mental health theme to explore recruitment issues in trials for neurodiverse people to make recommendations on study design and conduct to address potential inequities affecting this population. 

RCF aims and grant information  

RCF funding will enable the lead applicant, an experienced qualitative researcher and trials methodologist within the QuinteT team, to continue supporting the BRC mental health theme research, identify gaps in understanding, and develop an NIHR Advanced Fellowship or research proposal to advance methodology, specifically for ND trials. This will be an important step towards developing a centre of excellence and methodological support for ND trials and addressing the identified inequities for neurodiverse people.
The vision is to ensure that trials conducted with neurodiverse populations can successfully recruit and retain participants to generate the evidence needed to improve their unmet mental and physical health needs. 

Currently, two systematic literature reviews are being completed to assess recruitment and retention in on-going, completed or closed trials for people with autism and intellectual disabilities. Preparations are being made for undertaking interviews with people who have completed their one year follow-up in the world’s largest randomised trial for people with autism, STRATA, to assess issues around recruitment and retention. The aim would then be to collate and discuss findings with key stakeholders (people with ND, family, charities, clinicians) and hold a consensus meeting about how best to support trial recruitment for neurodiverse people.

Patient and Public Involvement (PPI) and Equality, Diversity and Inclusion (EDI)  

There are clear health inequities for neurodiverse people; they have a higher prevalence of mental health needs compared with the general population, but there are few robust research studies being undertaken for this population to expand the evidence-base and address these health needs. The proposed work will be taking steps to address this and ultimately reduce the health inequities for this population. The research team work very closely with an established PPI group who provide input from the research design to dissemination stage. The study team will closely monitor their sample to ensure we are inviting people from a spread of socio-demographic backgrounds, and that participants are offered choice in the method of interview to increase inclusivity. 

The preliminary (APRiCot, ApriStrat, STRATA) and ongoing work within the BRC mental health theme was developed in close collaboration with a long standing PPI advisory group with regard to the study design, conduct and write up. Their input was invaluable in terms of approaches were adopted and finding communicated with potential study participants, as well as how findings were interpreted, presented and disseminated. This involvement will continue to be modelled, drawing on PPI expertise to progress the proposed work within the BRC theme. 
 

Awardee: Mark Batterham (Avon and Wiltshire Mental Health Partnership NHS Trust)

Background

Negative symptoms are a common feature of non-affective psychosis and ordinarily precede the onset of positive symptoms. Negative symptoms constitute ‘a diminution or absence of normal behaviours related to motivation and interest or expression’. Contemporary conceptualisations of negative symptoms identify five key constructs, these being: blunted affect (decreased expression of emotion), alogia (reduction in quantity of speech), avolition (reduced initiation and persistence of goal-directed activity due to decreased motivation), asociality (reduced social interactions) and anhedonia (reduced experience of pleasure). 

Once the positive symptoms of psychosis resolve, negative symptoms can remain and are significantly correlated with poor functional outcomes. Effective treatments for primary negative symptoms remain scarce. Whilst there is little evidence supporting the efficacy of pharmacological treatments, exercise-based interventions show promise, although few specifically target negative symptoms. Therefore, the treatment of negative symptoms constitutes and unmet clinical need and new interventions are much needed.

RCF aims and grant information  

In January 2024, Bath and North-East Somerset Early Intervention in Psychosis Team (BaNES EI Team) completed a three-year service evaluation of walking practices used by the team to support early psychosis recovery. The evaluation findings indicate that structured group walks in particular may improve negative symptoms by fostering opportunities for social contact, reintegration, and extracting pleasure for individuals from the surrounding environment. 

Additional resources were required to develop group walking as an intervention for the treatment of negative symptoms. The study team are proposing to set about this challenge by assembling a multi-disciplinary project team, utilising published intervention development guidance and targeting external research funding. They have made a number of established and promising collaborations and contacts as a result of their work on the service evaluation and research activity as part of the Psychosis and Urban Living project independent of this work. 

The RCF award is intended to enable the study team to undertake the early stages of the intervention development process. Precisely which negative symptoms will be targeted by this new intervention and how is yet to be determined. However, the study team anticipate that a discrete programme of structured group walks will target the dimension of negative symptoms that incorporates anhedonia, asociality and avolition.

Patient and Public Involvement (PPI) and Equality, Diversity and Inclusion (EDI)  

The B&NES EI Team service evaluation revealed some disparities in respect of the demographic profile of those attending group walks. Most notably, service users from a non-white ethnic background were under-represented. An Equality Impact Assessment (EqIA) will be undertaken to investigate and address the reasons behind this disparity and other important EDI issues. Ahead of this assessment, the study team have formulated an outline plan to improve the equality, diversity and inclusivity of the group walks they offer. The study team will review engagement barriers and ask service users on the B&NES EI Team caseload from a non-white ethnic background directly about their views and preferences. 

Service users will be involved at two different levels. Two current or recently-discharged service users with lived experience of psychosis will be selected to work on the project as lived experience researchers. They will be involved in almost every step of this phase of the intervention development process. Up to 12 additional service users will be involved in group discussions about the acceptability and inclusivity of the proposed intervention. Targeted discussions will be held with service users from a minority ethnic background to identify potential barriers to participation.

The work of the two lived experience researchers and the data gathered from the consultation group, as well as targeted individual discussions will inform the project next steps and subsequent grant application.
 

Awardee: Dr Sarah Sullivan (University of Bristol)

Background

An algorithm, known as P Risk, has been developed that predicts future risk of psychosis using GP electronic medical records of what people have consulted their GP for in the past and other personal information on gender, age, ethnicity and social deprivation. P Risk is as statistically accurate as risk prediction algorithms already used by GPs for predicting physical health conditions. This study will test the feasibility, acceptability and implementation of P Risk in live primary and secondary care clinical environments and with live clinical data. It is vital that risk prediction algorithms are validated outside of the data within which they were developed, to provide evidence that they will work in other environments. This study will investigate the possibility of using Clinical Record Interactive Search (CRIS) Akrivia data to externally validate P Risk. 

The study team hypothesise that CRIS might have several advantages for an external validation: 

1. Free text fields which often precede or take the place of a structured coded diagnosis. 
2. Trauma data 
3. An accurate referral date
4. Secondary care medication prescription data

RCF aims and grant information  

There are several questions the study team would like to investigate in the CRIS data environment in order establish the utility of the data environment for external validation of the P Risk algorithm. The findings from this study will be impactful in determining the usefulness of CRIS for the external validation of P Risk by providing an insight into how useful CRIS data is for mental health research more generally by delivering detailed information on data quality and missing data. The study will look at:

• The proportion of missing diagnostic codes across the database
• The usefulness of the free text fields for the recording of a diagnosis or symptoms strongly suggestive of a diagnosis, as well as correlation between this and a structured psychotic disorder diagnosis
• The recording of medication prescriptions for antipsychotics (at a dosage suggesting use for psychosis) and the correlation between this and a structured psychotic disorder diagnosis
• The prevalence of a recording of past trauma in the free text fields and the correlation between this and a structured psychotic disorder diagnosis
• The likely size of the available dataset and whether other centres can be included in any external validation study
• The presence of a referral date field
• The average time between referral date and coded structured recording of a psychosis diagnosis (where this exists) and whether this duration differs between those without a structured coded diagnosis and those without
• The presence and completeness of a field to record which mental health specialist team is treating the patient

The findings of this investigation would feed into a National Institute for Health and Care Research (NIHR) Advanced Fellowship or other NIHR grant application to carry out the external validation and then investigate the effectiveness, including cost effectiveness, of P Risk on shortening referral times from primary to secondary care and thereby improving psychosis outcomes.

Patient and Public Involvement (PPI) and Equality, Diversity and Inclusion (EDI)  

P Risk is a good example of EDI because it provides an individualised risk prediction which is based on individual consultation history and socio demographic variables such as ethnicity, gender and social deprivation. It is important to be sure that P Risk predicts risk equally accurately in all groups. Using a sub group analysis we will investigate how P Risk performs for two groups who are at increased risk such as Afro-Caribbean men and older women. 
The P Risk study arose as a result of psychosis PPI panels who expressed concern about the fact that GPs did not recognise early symptoms, which had delayed their pathway to specialised mental health care. Throughout the research design process there were regular meetings with the psychosis PPI panel to consult them on the participant facing documents and their views and opinions on a prediction of mental illness using a data-driven algorithm. 
 

Awardee: Dr Megan Robb (University of Bath)

Background

Safeguarding adults with learning disabilities is a growing practice area for health and social care practitioners. People with learning disabilities (PWLDs) are at a higher risk of experiencing abuse or neglect than the general adult population. In England, there are just over 950,000 people with learning disabilities with approximately 153,145 receiving social care support due to their learning disability. The most recent safeguarding statistics show that 15,255 safeguarding enquiries were made in England for people with support needs due to learning disabilities last year, an increase from 14,920 the previous year. 

Those carrying out enquiries are normally qualified social workers. The guidance with the Care Act (2014) advises that professionals undertaking safeguarding work "should work with the adult to establish what being safe means to them and how that can be best achieved". Therefore, social workers undertaking statutory safeguarding work are responsible for consulting and involving people with learning disabilities in the process. However, the existing research literature shows that understanding of whether and how PWLDs are included in the adult safeguarding process is limited.  Further to this, no studies from England have explored PWLD's experiences of the statutory safeguarding enquiry process. The researchers seek to address a gap in the research knowledge of how PWLD experience this statutory safeguarding process.

RCF aims and grant information

The research team will use the RCF funding to complete a pilot study which will provide the groundwork necessary to produce a National Institute for Health and Care Research (NIHR) bid for the Research for Social Care call in January 2025, exploring how people with learning disabilities are involved in the safeguarding enquiry process. 

RCF funding will progress the pilot study as follows:

1. Pilot focus groups - Focus groups with social workers experienced in undertaking safeguarding enquiries with people with learning disabilities and another with professional advocates who have experience being appointed by local authorities under Section 68 of the Care Act (2014) to support PWLD going through a safeguarding enquiry. 
2. Pilot interviews - Conduct up to 5 interviews with PWLD and 5 interviews with informal/family carers regarding their experiences of the safeguarding process. 

Patient and Public Involvement (PPI) and Equality, Diversity and Inclusion (EDI)  

People with learning disabilities have often been excluded from research on issues which impact their lives. This exclusion may be even more significant for PWLD who also belong to marginalised communities (for example ethnicity, sexuality, gender identity, religious minorities and others). To recruit participants from diverse backgrounds, we will expand our partnerships with voluntary sector groups to enable us to access PWLD from minoritised communities. For example, organisations such as Choicesupport who offer a peer support LD and Neurodivergent LGBTQ+ support network, will be approached. 

PPI groups will be consulted to provide feedback on resources for the pilot study. A further barrier to inclusion for PWLD may be the accessibility of information regarding the project. Resources will be made available in various formats and developed in consultation with PPI groups.

As the project progresses, the PPI groups will be involved in the ongoing scoping literature review, as well as being asked for feedback on the resources developed for the project (for example information sheets, consent forms and interview schedules). PPI input and advice will also be sought to discuss the potential of developing a researcher with lived experience post as part of the full NIHR bid. 
 

Awardee: Dr Karin Petrini (University of Bath)

Background

Dementia can have devastating consequences for a person and their loved ones. The illness can affect memory and attention with a negative impact on the person and their loved ones’ quality of life. There are some medicines available which fight the decline in some abilities. However, the positive effects of these medicines are small, and they can have negative side-effects for some people. There is a need for treatments that do not rely on medicines to slow the progressive decline in abilities that happens in dementia. Treatment using music has been shown to bring someone with dementia ‘back to life’. However, we do not know how well music treatment works or what type of music treatment is best. This is because some research studies have shown positive effects of music treatments on dementia, while others have not. 

The studies which have compared different music-based treatment types have shown that active treatment may have added benefits. Treatments that involve playing an instrument have shown evidence of improving sensory abilities such as sight, hearing and touch, motor abilities, attention and memory.

RCF aims and grant Information  

Developing an effective music treatment which can be delivered by volunteers and caregivers without special training in music or music therapy is key to making a treatment that is available, feasible and affordable. The study team have developed an active music treatment which comprises an easy-to-follow method to allow the patient with dementia to play preferred music or songs with the piano with the help of their caregiver. The study team have tested this method with four patients to assess initial feasibility, but now aim to involve patients and caregivers from the outset to refine the developed treatment.

The project seeks to involve 5 pairs of patients with mild to moderate dementia and their caregivers in 6, two-hour, meetings to assess whether the piano-playing intervention is something that they would like. This will help make sure that the delivery of the intervention is user-centred. The meeting will develop dynamically and will be guided by the Patient and Public Involvement group preferences; however, by the end of the six meetings the study team aim to have feedback about the feasibility, usability and appeal of the intervention, as well as of the measures. 

The study team aim to work towards a National Institute for Health and Care Research (NIHR) Research for Patient Benefit (RfPB) Randomised Control Trial (RCT) feasibility/pilot grant after gathering supporting evidence through the RCF work. If successful, the NIHR RfPB RCT feasibility/pilot grant will give the study team the basis for a strong submission to a larger NIHR Health Technology Assessment RCT open call or commissioned-call application. 

Patient and Public Involvement (PPI) and Equality, Diversity and Inclusion (EDI)  

The study team will engage with under-represented groups, such as patients with mild to moderate dementia and their caregivers. The study team plan the intervention to be inclusive, so that it could be rolled out to everyone that would like to help a person affected by dementia. The intervention, as well as the research idea and the measures to be used in the future project and grant application, will be discussed and assessed with the help of the PPI group. 
A PPI representative has been involved in the process so far has a strong belief in music intervention. This PPI representative started playing the guitar when their loved-one was diagnosed with dementia, and used music as a bonding method until the end of their life. To assess the initial feasibility of playing the piano, a case study was conducted with four patients with dementia at various stages. All patients played a song with one hand with the caregiver helping them to follow the numbers on the provided sheet. There were differences in ability, but it was an enjoyable activity for all. 

Awardee: Dr Jeremy Dixon (University of Cardiff)

Background

International research has shown that people who are living with mental health problems are at greater risk of abuse and neglect than others in the population. Abuse may be psychological, physical, financial, or sexual.  Individuals may also self-neglect.  Research has found that such abuse often goes unnoticed; as mental health problems may affect a person’s ability to recognise abuse or report it.

In England, preventing or responding to adult abuse and/or neglect is underpinned by the Care Act 2014, a process known as ‘safeguarding’.  The Care Act states that professionals should undertake a safeguarding enquiry where there is evidence that an adult is in need of care and support, and is not able to protect themselves from abuse or neglect (section 42).  

Professionals should promote the person’s wellbeing and have regard to their views, wishes, feelings and beliefs when deciding on any action. However, there is limited input from people affected by mental health problems or their representatives. There is a need to examine how people with mental health problems view abuse and neglect, the steps they feel should be taken to improve their safety and wellbeing, their awareness of their rights, and how safeguarding services can best respond to their needs.  

RCF aims and grant information  

The RCF funds will pay for service user and carer consultation and for a research associate to carry out work towards a scoping review, to inform a bid to the National Institute for Health and Care Research (NIHR) Programme for Social Care call. This bid will focus on the abuse of people living with mental health problems in the community.  It aims to optimise the quality and inclusivity of health and social care systems that support people with mental health problems to remain safe in the community.  The research questions for the eventual NIHR Research Programme for Social Care call will be informed through consultations with service users, family carers and professionals.  

Consultations with service users, carers and professionals will take place, as well as holding two advisory group meetings in months 1 and 6 of the project.  The first advisory group will consist of four people living with mental health problems.  The second advisory group will be made up of two family carers, two social workers working in adult safeguarding teams, as well as a doctor, a nurse, a psychologist and a police representative.

Patient and Public Involvement (PPI) and Equality, Diversity and Inclusion (EDI)  

NHS Digital collates data from local authorities. Figures show that 67% of people involved in section 42 safeguarding enquiries reported by local authorities are 85 years-old and over.  The data indicates that women are slightly more likely to be involved in a section 42 safeguarding enquiry (58%), although this difference might be explained by the number of older adults subject to adult safeguarding, as women tend to live longer than men.  Asian and black people equate to 3% and 2.8% of figures respectively (NHS Digital, 2023).  
The study team aim to recruit experts by experience and carers through voluntary mental health and carers organisations in Bristol and Cardiff and seek to recruit a mixed experts-by-experience group which has a balance of ages, genders and ethnicities.
The research bid has been informed through consultations with expert-by-experience who have used mental health services, as well as those with lived experience of being a family carer of a person with mental health problems.
 

Awardee: Professor Dheeraj Rai (University of Bristol)

Background 

Autistic adults have higher rates of the social factors which lie behind health inequalities in society, such as social isolation and under-employment. Social prescribing is a way of addressing these social determinants of health.
Social prescribing involves using a ‘social prescriber’ who assists patients in an integrated way with the help of community services offering employment, housing or financial advice. They also offer a range of healthy lifestyle activities, such as cooking classes, art groups, outdoor activities or exercise programmes. Health and lifestyle issues are addressed alongside socioeconomic matters and social prescribing helps the patient access a wide range of community and voluntary services. 
Current literature highlights that there is a need to further understand the process of social prescribing and quality of life outcomes or benefits from using this intervention.  This pilot study will improve our current understanding of social prescribing for autistic adults and measure quality of life and mental health outcomes from social prescribing treatment. 

RCF Aims and grant information  

The aims of this study are to:

1. Collect pilot data on the attitudes and experiences of autistic adults regarding social prescribing and the acceptability of the intervention
2. Explore what is felt to be the most effective part of the intervention and evaluate the efficacy of social prescribing for autistic adults in Bristol Autism Spectrum Service (BASS) by exploring the extent to which social prescribing leads to enhanced service user wellbeing 
3. Explore factors that facilitate and hinder the implementation of a social prescribing pilot and affect the adherence, and completion rates by service users
4. Understand barriers to receiving support by exploring the factors which lead to someone deciding not to receive support from social prescribing

The study has received favourable ethics opinion and Health Research Authority (HRA) approval from Frenchay NHS Research Ethics Committee (REC) and has commenced recruitment. The funding is requested to continue and complete recruitment and analysis of the pilot data in order to inform next steps with this work. 

Patient and Public Involvement (PPI) and Equality, Diversity and Inclusion (EDI)  

The protocol was designed with the help of autistic adults who have accessed post-diagnostic support through the BASS service. They provided feedback on the research question and plans, as well as provided feedback on the acceptability of the questionnaires being used for the study. 

Current autistic contributors will continue to be involved as this work evolves. Prior to any grant application, the data will be assessed to see whether it demonstrates a larger project is warranted or is feasible and the project team will closely involve PPI representatives in interpreting the findings and developing the next steps in the study. 

The protocol has already been developed in close consultation with purposively selected diverse autistic advisors who have experience of support from BASS. This practice will continue throughout this work, as well as any resulting research applications for larger scale projects.
 

Background

Understanding patient experiences of detention under the Mental Health Act 1983 is crucial to informing the implementation of law, policy and practice. However, limited literature surrounds the use of the Mental Health Act 1983 for patients with dementia who are detained in hospital, or how such detention is experienced by patients and their families.

Dementia advocacy groups have highlighted that the views of people living with dementia are often neglected in research, due to beliefs that they are inherently vulnerable, or incapable of providing cogent views. To improve the experience of detention for people living with dementia, there is an urgent need to examine what factors inform the use of the Mental Health Act 1983 and the extent to which the specific needs of people living with dementia are taken into account.

RCF Aims and Grant Information

This RCF funding will be used to undertake a scoping study for the groundwork required to produce a bid to the NIHR Research for Social Care call to conduct a larger scale project. The bid will be informed by consultation with experts by experience and professionals and will focus on practice within AWP and one other mental health trust in England.

The project will include four stages:

Stage 1: Scoping review of studies focusing on decisions associated with the detention of people living with dementia in health and social care settings to identify research questions and summarise and report the results of current literature.

The anticipated research questions will explore:

• What processes are put in place to protect the legal rights of people living with dementia who are detained in health and social care settings?
• Who is involved in the decision-making process?
• How are the views of the person with dementia taken into consideration (or not)?
• To what extent are the views of family members considered throughout the detention process?
• What other factors impact on professional decision-making in this context?

Stage 2: Meet with Approved Mental Health Professional Leads to identify what information is routinely collected by the Local Authority about people who are detained under the Mental Health Act 1983 and how this is stored to gain appropriate access. 

Stage 3: Pilot separate online focus groups of the following groups: care coordinators, Approved Mental Health Professionals, doctors involved in Mental Health Act assessments, nursing staff involved with the patient on admission and family carers who have been formally involved with the Mental Health Act assessment. We will ask these groups their opinions of how best to interview people living with dementia about their experiences of the Mental Health Act 1983. 

Stage 4: Pilot interviews will be conducted with people living with dementia about their experiences of being detained under the Mental Health Act 1983 and recruited via Innovations in Dementia. 

PPI and EDI

There will be two advisory groups of:

1. People living with dementia
2. Professionals and carers

 The advisory groups will be asked to comment on the research design for the scoping review and pilot research and on relevant documentation such as information sheets for participants. Both groups will prepare a short presentation for the presentation of findings event, give a short presentation to professionals and participate in the panel discussion.

Background

Autistic adolescents have an increased risk of poor health outcomes. They are 16 times more likely to meet diagnostic criteria for a mental health condition compared to their non-autistic peers. Longer and more intensive support is needed due to complex mental health presentations. Yet, there is reduced availability of evidence-based interventions for this population. Autistic people are at higher risk of experiencing thoughts of suicide, and this risk is perpetuated by long waiting lists for child and adolescent mental health services, which provide interventions only after mental health problems have become significant, enduring and harder to treat.

Adolescence represents a moment of opportunity to intervene before mental health problems develop. New interventions are needed to reduce distress and improve psychological well-being in autistic adolescents and ultimately reduce demand on over-subscribed mental health services.

RCF Aims and Grant Information  

Phase 1: Intervention Planning

This phase will comprise a systematic literature review and meta-synthesis of evidence regarding factors contributing to psychological well-being in autistic adolescents. This will be used as a basis for the person-based approach to intervention development in the second part of the project

PPI work will help develop the research questions, and develop an accessible summary of the findings.

Phase 2: Intervention Development

The findings from the systematic review will be used to identify evidence-based intervention aims and objectives, and preliminary guiding principles for the intervention. The intervention must appeal and be accessible to autistic adolescents. PPI meetings will then be conducted to share the findings from the systematic review and to confirm the key aims, objectives, and intervention guiding principles.

An intervention planning table will be co-designed with the PPI group. The aim will be to identify barriers and facilitators to the intervention targets and to identify potential mechanisms of the new intervention and a model for how this intervention will lead to improved psychological well-being.

Finally, PPI work will identify the best way to accessibly present the intervention principles, targets, and mechanisms. An autistic graphic designer will then produce accessible summaries of the key intervention principles.

PPI and EDI

This proposal is founded on PPI work completed with autistic people, and through a partnership with national charity Ambitious about Autism (AaA). The number one research question identified by autistic people in the UK is 'which interventions improve mental health or reduce mental health problems in autistic people?' (James Lind Priority Setting Partnership, 2016). Moreover, a co-production project at AaA demonstrated the desire for co-produced interventions focused on improving wellbeing by developing a positive sense of autism identity in autistic adolescents.

Timeline for RCF

Phase 1: Intervention Planning

Phase 2: Intervention Development