By taking part in research you will be helping us to test and develop new treatments and methods of care
By taking part in research you will be helping us to test and develop new treatments and methods of care.
All our studies have been reviewed by the Health Research Authority and are carried out by experts from clinical, research and academic backgrounds.
Who this study is aimed at?
We are looking for healthy volunteers, people with memory problems, people with movement disorders and stroke survivors to help us with a new research study.
Who can't take part?
Study summary
We want to find out if we can measure memory, mood and thinking ability using a computerised doctor called “CognoSpeak”. CognoSpeak is a human looking image on a computer screen that will ask you questions regarding your health. The answers will be analysed by a computer program to look for changes in speech due to memory problems and/or mood.
Study visits
We will ask if you would like to take part from your own home (if you have access to technology) or if you would like to do it at the hospital or a community centre. You can be accompanied by family, a carer or a friend if you would like.
You will be asked to:
Services taking part
Memory Service
Who to contact
Amanda Bennett: amanda.bennett@shsc.nhs.uk
Jo Buckley: jo.buckley@shsc.nhs.uk
Who this study is aimed at?
Who can't take part?
Study summary
In a previous study, the study team adapted a new form of psychological therapy called Acceptance and Commitment Therapy for older people with treatment-resistant generalised anxiety disorder (TR-GAD). The purpose of this trial (CONTACT-GAD) is to see whether adding this therapy to usual care is helpful for reducing anxiety in older people with TR-GAD compared to usual care alone. The study team also want to see if this therapy is good value for money in comparison to usual care alone.
Acceptance and Commitment Therapy is a form of talking therapy that helps people learn how to live as best a life as they can with chronic worry, by helping them do things that are important and matter to them, alongside any worries or concerns they may have. It has been found to be helpful in other conditions including depression and chronic pain and may be particularly suited to older people with TR-GAD.
Study visits
Eligible participants with TR-GAD will be randomised in a 1:1 ratio using a web-based, centralised randomisation system hosted by the Sheffield Clinical Trials Research Unit (CTRU).
Participants randomised to ACT plus usual care will be offered up to 14 individual (i.e. one-to-one) sessions of tailored ACT over 6 months plus a booster session approximately 3-months post-intervention (i.e. approximately 3 months after the final ACT session), with each session lasting up to 1 hour.
Services taking part
Who to contact
Hannah Gower (hannah.gower@shsc.nhs.uk)
Rosie Duncan (rosie.duncan@shsc.nhs.uk)
Who this study is aimed at?
Individuals aged 16 or over who:
Who can't take part?
People who don't meet the inclusion criteria.
Study summary
Eating disorders are severe psychiatric illnesses and are associated with one of the highest mortality rates within mental health. To improve understanding of the genetic and environmental risk factors behind eating disorders, researchers need to recruit thousands of participants. This project is led by the National Institute for Health Research (NIHR) BioResource Centre Maudsley (part of the NIHR BioResource), researchers at King's College London and Beat, the UK's eating disorder charity.
Study visits
Completion of a consent form, questionnaire taking 30-45 minutes to complete and providing a saliva sample; the kit for which will be sent to your home.
Services taking part
Eating Disorders
Who to contact
If you are interested in the study, you can either contact our team or you can access the study via the link below: Eating Disorders Genetics Initiative | EDGI UK
Jennifer Bingham (jennifer.bingham@shsc.nhs.uk)
Who this study is aimed at?
People aged 16 and over with a severe mental illness who receive care from an NHS community mental health service that has agreed to be part of this study are being invited to take part.
Who can't take part?
Lacking capacity to give informed consent; poses a current significant risk to others (including risk of sexual/physical violence); a co-existing learning disability of other significant cognitive impairment; those on sex offenders register.
Study summary
Our study team wants to find out if sexual health information sessions with a specially trained health professional can improve the sexual health compared to usual care in people with a severe mental illness. These sessions would involve talking through sexual health issues, providing information about healthy sexual activities, and discussing where to get help and advice.
Study visits
If you are eligible to take part, you will be randomly allocated to be in either the sexual health information sessions group or the usual care group. If you are allocated to be in the sexual health information sessions group, in addition to continuing with your usual care and support that is usually available to you, a health professional trained to deliver the sexual health information sessions will contact you to arrange a day and time to meet. This may be a face-to-face meeting or a video call meeting. After this, you will organise to meet on two more occasions.
Each meeting will last for up to 1 hour. Each time you meet with the health professional they will discuss things with you, such as:
If you are allocated to be in the usual care group (sometimes also known as the ‘control group’), you will continue with your usual care and support that is usually available to you. In other words, it is ‘business as usual’ and no additional care or treatment will be provided as part of the study. However, being in the usual care group is an important role in the study and your continued involvement helps us to assess whether the sexual health information sessions are helpful in addition to usual care.
Services taking part
Trustwide
Who to contact
Jade Cupac: jade.cupac@shsc.nhs.uk
Who this study is aimed at?
Study summary
Three quarters of mental health problems start before the age of 25. However, people in this age range are the least likely to access and receive mental health care. People from underrepresented backgrounds are even less likely to receive help. For example, people who feel they are not listened to, understood, valued, or miss out on opportunities that others have access to.
There are lots of long-term consequences if poor mental health goes untreated. Online tools may be a more accessible way of helping people to cope with mental health challenges. In this work, we are looking to develop an online arts and culture experience, to support mental health in diverse people aged 16-24. This would be like an online museum where you could engage with diverse people’s art and artifacts and the stories and lifestyles behind them. At this stage, we would like to learn more about the people whose voices are not well represented in healthcare research to help with this work.
Study visits
You will then be given the opportunity to fill in a form (online, by phone or in person) where you can answer questions about your age, ethnicity, current mental health, other background information and contact details (email address or telephone number). You may also wish to consider this information and whether you wish to take part, with a supportive adult who you trust. You may also have this person with you when taking part in the study. It should take approximately 10 minutes to complete the questions.
We will select a range of people from different backgrounds, identities and locations for an interview. We will contact you in due course if you are selected for an interview. selected to take part in the interview a researcher will contact you on the telephone number or email address you provided and will invite you to an interview so you can tell us your experiences of mental health and ideas about what might help best. The interviews will take place at a time convenient to you and can be done online through Microsoft Teams, by phone, or in person. We will discuss the time, duration, and format of the conversation with you to ensure that you are comfortable and have the time and space to share your story as you choose. You will be able to take breaks, and we can meet you more than once if you prefer, over several occasions, or within the same day. We are also able to consider other ways of communication if you prefer, as you may have other ways in which you would like to share your experiences.
Services taking part
Who to contact
Hannah Gower (hannah.gower@shsc.nhs.uk)
Who this study is aimed at?
A participant is eligible for the study if the following criteria are met:
Who can't take part?
Study summary
Mental health problems during pregnancy and in the early days of parenthood are common. Recent research has shown there is a gap in access to mental health care for women from underserved groups, such as those from ethnic minority backgrounds or living in deprived areas. We aim to work with healthcare professionals, local communities, hospital Trusts, and public health representatives to explore access barriers and gaps in service provision for underserved women in the perinatal period with mental health needs.
This online survey is part of a larger study that will use an approach called Experience Based Co-Design to develop a bespoke, trauma-informed, and culturally sensitive intervention that addresses unmet perinatal mental health needs for underserved women.
Study visits
If you agree to take part, you will be asked to complete an online survey. The survey will ask about your experiences delivering perinatal mental health services, including questions about barriers and facilitators to providing care for women from underserved groups. The survey includes the validated Pragmatic Context Assessment Tool (pCAT) along with basic demographic and professional data. It should take approximately 15-20 minutes to complete.
Services taking part
Trustwide
Who to contact
Study Manager, Naseeb Ezaydi: n.ezaydi@sheffield.ac.uk
Who this study is aimed at?
Who can't take part?
Study summary
Over half of adults in the UK gamble; but nearly two million of these suffer problems such as debt, relationship troubles, and mental health problems. Most people who experience gambling harms do not ask for help or get sent for treatment. However, people do ask for help from places such as Community and NHS Mental Health Services or Charities such as Humankind. The aim of this research is to find out how many people may be suffering from gambling related harm in mental health and drug and alcohol services in England.
Study visits
After giving your consent, you will fill in a quick questionnaire (5-10 mins) on a tablet or computer. All your answers will be fully anonymised, so there is no way in recognising who you are. With your permission, we would then like to link the gambling questionnaire to information already collected by this service (which will be made anonymous by the service so you cannot be identified in any way). Your anonymous data will then be shared with us.
Services taking part
Who to contact
Jade Cupac (jade.cupac@shsc.nhs.uk)
Rosie Duncan (rosie.duncan@shsc.nhs.uk)
Who this study is aimed at?
Who can't take part?
Study summary
The project has three aims:
Study visits
Taking part in this research involves choosing whether you want to do any of the following things:
Services taking part
Who to contact
Jade Cupac (jade.cupac@shsc.nhs.uk)
Who this study is aimed at?
Participants will include people with SMI, their carers and practitioners (mental and dental health care professionals).
All participants will need to meet the following inclusion criteria:
The following additional inclusion criteria will apply:
People with SMI:
Carers:
Practitioners:
Who can't take part?
Those who dont meet the above.
Study summary
The purpose of this study is to develop a programme to improve oral health, created with and for people with bipolar, schizophrenia and schizoaffective disorder, people who support them, and professionals involved in oral health and severe mental illness. People with these conditions experience worse oral health than those who don’t have these health conditions. This can have a big impact in people’s overall health and quality of life.
In this study we aim to:
Study visits
Two online workshops which will be two to three hours long including a break, and two half day face to face workshop which will be up to 4 hours, including lunch.
Services taking part
Trustwide
Who to contact
Study lead: Dr Masuma Mishu masuma.mishu@ucl.ac.uk
Who this study is aimed at?
Who can't take part?
Study summary
The purpose of this study is to test a programme to increase physical activity. The study has been created with people with bipolar, schizophrenia and schizoaffective disorder, people who support them (carers), and professionals involved in physical activity and severe mental ill health. People with conditions like those mentioned above are generally less physically active than those who don’t have these health conditions, and the World Health Organisation has said that being more physically active can have as big a positive impact on health as stopping smoking.
Study visits
Once you have given your consent, you will be put into one of two groups (this will be selected at random by a computer and not by a member of the SPACES team). The groups are Physical Activity and Usual Care. If you are in the Physical Activity group, you will receive a physical activity intervention (something designed to help increase physical activity) as well as all of the care you usually receive from the NHS. If you are in the Usual Care group, you will receive all of the care you usually receive from the NHS but will not be asked to complete any of the physical activity intervention.
If you are in the Physical Activity group, you will be asked to answer some questionnaires with a researcher, this meeting may take up to 60 minutes and will be at NHS premises like a hospital or GP surgery, your home or another community location that is convenient for you and the researchers.
You will be asked to wear a monitor on your wrist to measure your current level of physical activity. We will ask you to do this for 10 days. There will be two similar follow up appointments after 3, 6, and 12 months, lasting up to 45 minutes and you will be offered £20 cash or vouchers at each of these three appointments to thank you for your participation.
You will also be invited to take part in the SPACES physical activity programme, which is an 18-week activity programme which offers a two-hour group session once a week with up to an hour of activity as well as discussion and reflection or socialising time. The group will be made up of people who live with severe mental ill health and will be guided by two trained Physical Activity Coordinators. The activity within the group sessions will include three activity types that will rotate throughout the 18-week programme.
Services taking part
Trust-wide
Who to contact
Jo Buckley - jo.buckley@shsc.nhs.uk
Alex Carey - alex.carey@shsc.nhs.uk
Who this study is aimed at?
Who can't take part?
Study summary
One in three people with psychosis experience distressing visual hallucinations (VH) – seeing things that others cannot. When VH occur, they can have a detrimental impact on people’s lives, such as more frequent and prolonged hospital admissions, and greater likelihood of suicide.
This study will conduct the next important steps to improve peoples lives with VH and psychosis. It will develop the first questionnaire of appraisals of VH in psychosis. This will enable people to better assess these and develop the first effective targeted treatments for VH.
Study visits
Once participants have given informed consent, they will be directed either to paper copies of the questionnaires, an online version of the questionnaire, or questionnaires may be administered over the phone or video call.
This assessment pack may be completed at outpatient clinics (e.g. community bases), inpatient settings (e.g. in a clinical room on the ward or rehabilitation units), or at home. Participants will complete the questionnaires online, via paper copies, or they may be administered over the phone. Participants will have the option of support from CRN staff either face-to-face or via video or phone consultation. Only video conferencing software that has been approved by the sponsor (CNTW) and the local Trust will be used for clinical contacts (e.g. OneConsultation or Microsoft Teams). Participants will mostly complete the questionnaires in one go, with the option of support of the CRN staff if preferred. If a participant prefers however, they may split the session up so that they complete some measures on one occasion and the remainder on separate occasion(s). The CRN staff will aim to arrange the subsequent sessions at the first appointment but may also contact the participant, if required, via phone, text, email or in writing (according to the participant’s preference) to arrange this. and they will be recompensed £10, or equivalent value in shopping vouchers for their time.
Services taking part
Who to contact
Jade Cupac (jade.cupac@shsc.nhs.uk)
This blog from Helen Gilburt, Fellow in Health Policy at The King’s Fund, talks about this study.
MH-CREST is an NIHR funded study which seeks to understand how community crisis care services for people with mental health problems work, who they work for, and in what circumstances. It is led by a team based in The School of Healthcare at the University of Leeds and sponsored by Sheffield Health and Social Care NHS Foundation Trust. Read more here.
Who is the funder?
NIHR Research for Patient Benefit.
What is the grant award?
£345,310.
Who is involved?
Sheffield Health and Social Care NHS Foundation Trust, University of Leeds and University of Sheffield.
Project start
September 2019.
Project end
October 2021. The results of this study are currently being written up.
Who is the funder?
NIHR Research for Patient Benefit.
What is the grant award?
£290,390.
Who is involved?
Sheffield Health and Social Care NHS Foundation Trust, Sheffield Hallam University, Sheffield Teaching Hospitals NHS Foundation Trust and Nottingham CityCare Partnership CIC.
Project start
July 2019.
Project end
August 2022.
Study summary
Venous leg ulcers (VLUs) affect almost 400,000 UK people over the age of 65. These are triggered by inadequate blood flow through the veins causing pain, mobility restrictions, devastation and social isolation. Each VLU costs up to £7.6K per year to the NHS while annual healthcare costs are up to £900 million.
Compression therapy (usually stockings or bandages) are often used to treat VLUs: although healing rates are good, ulcers often return. Moreover, many remain open for up to 1 year, needing about 50 visits to heal. Consequently, supportive therapies to compression are needed to reduce healing times.
Exercise may provide an answer. We recently completed a small study, examining if it was possible to use a 12-week, community-based exercise programme, along with compression therapy, to treat VLUs. We showed that the programme was safe, participants enjoyed it and were attending their sessions, being also happy to complete their assessments. The programme also offered reduced healing times and cost savings to the NHS of up to £875 per ulcer. Nevertheless, the programme didn't seem to be accessible for 40-50% of this group; these receive treatment at home and could otherwise do the exercises. Therefore, before embarking to a full-scale study to explore the clinical benefits and calculate the costs of a wider programme implementation, we need to design and explore the practicality of a home-based exercise programme, which would be offered to those who cannot travel. This is worth trying, as our findings indicate that 74% of house-bound people with VLUs would willingly try it.
Our 2-phase, Sheffield-based study will last 36 months. In phase 1, people with VLUs will help us design the home-based exercise programme via round-table discussions, interviews and a workshop. In phase 2, we will recruit 40 people with VLUs, who have treatment at home and although cannot travel, can do some flexibility, stretching and chair-aerobics exercises. Following assessments (measuring ulcer sizes, fitness, quality of life and associated costs among others), participants will be placed into one-of-two groups by a computer: one group will follow the phase 1-defined, home-based exercise programme and have standard at-home compression therapy; the other will receive compression therapy only. All participants will complete 3 home-based assessment sessions: initially at recruitment, then at the intervention end and finally 6 months after group allocation. We will also talk to 18 participants and 10 healthcare professionals, to hear about their intervention experience.
People with VLUs have helped us develop this grant application. They will also help us to: i) design the home-based programme, ii) best-manage the study and iii) interpret and publicise our findings. Upon completion, we will move to a full-scale study, which will provide a solution to this costly and devastating health problem.
Neurodegenerative disease (ND) is an umbrella term for a range of conditions which primarily affect the brain neurons. It includes dementias, Parkinson's disease, Prion and Motor neurone diseases, Huntington's disease, spinocerebellar ataxia and Spinal muscular atrophy.
Almost 20% of those people who receive "at home" treatment for VLUs, live with NDs as well. Our experience suggests that people who live with early-stage NDs are either reluctant to participate or aren't referred to the study, despite the potential clinical benefits, because of their condition. As we need to better understand and overcome the specific challenges faced by them in following the programme, we will specifically engage with 6-8 people with NDs and their carers to adapt it, in order to support them in being able to follow the programme to completion. People in this special sub-study, which will run in parallel to the main one, will conform to all study inclusion criteria and will help us adapt the programme and its delivery. They will also follow a 1-month "crash-course" of the adapted programme and at the end will let us know what went well and what didn't. Once completed, this special sub-study will give us an idea as of how to approach and implement, our exercise programme to wider VLU clinical groups, looking after them in the best possible way.
Who is the funder?
NIHR Programme Grant for Applied Research.
What is the grant award?
£2,719,459.
Who is involved?
Sheffield Health and Social Care NHS Foundation Trust, University of York, Greymattaz, Leeds and York Partnership NHS Foundation Trust, Tees, Esk and Wear Valleys NHS Foundation Trust, Bradford District Care NHS Foundation Trust, University of Nottingham, South London and Maudsley NHS Foundation Trust and University College London.
Project start
January 2020.
Project end
January 2026.
Project summary
The proportion of people with mental illness who smoke tobacco is very high compared to the general population. It can reach figures over 70% among those with schizophrenia and in hospitalised patients with severe mental illness - compared to only around 15% in the general population. As people with mental illness are usually heavily addicted to tobacco, smoking causes large amounts of disease and deaths in this group, often from cardiovascular, respiratory illness and cancer. Smoking has been recognised as the single largest cause of health inequalities for people with mental illness. People with mental illness lose up to 20 years of life mainly to the consequences of their smoking. Although mental health patients often want to quit and can do so successfully, smoking is rarely addressed in mental health care. In many mental health settings in England, a historic 'smoking culture', accepting smoking as the norm, can still be found. However, guidance from the National Institute of Health and Care Excellence (NICE) recommends that all mental health care settings become entirely smokefree, and that mental health patients should have access to evidence-based stop smoking treatment. At present mental health Trusts across England are in the process of implementing this guidance.
For many patients, receiving treatment in a smokefree inpatient environment will be a rare experience of abstaining from tobacco in their adult lives. However, no strategies to help maintain or achieve a smokefree lifestyle and avoid relapse after discharge exist. This means that in the vast majority of cases, patients will return to old smoking behaviours within days of discharge. Huge opportunities to promote health and save lives are being missed.
We propose to develop and test ways to support mental health inpatients after discharge in maintaining or achieving abstinence from tobacco smoking, building on existing evidence and new theory-based components. We will interview patients to explore their experiences and support needs relating to smoking that take into account the home and social environment. We will also explore mental health staff attitudes and training needs related to the subject. Complementing existing evidence with our new findings, we will design a multi-component intervention that is based on behaviour change theory and finalise it in workshops with staff and service user/carer representatives. We will then test the intervention package and refine it where necessary. We will conduct a randomised controlled trial, to see whether our intervention is more effective than current practice, and analyse whether our model represents value for money in the long term. If our findings are positive, we will develop a strategy for implementing the intervention in the NHS. An effective and cost-effective support model could help to save lives in this disadvantaged group.
Project website
www.york.ac.uk/healthsciences/research/mental-health/projects/sceptre
Who is the funder?
NIHR Programme Grant for Applied Research.
What is the grant award?
£2,525,160.
Who is involved?
Sheffield Health and Social Care NHS Foundation Trust, University of York, University of Leeds, Sheffield Hallam University, Northumbria University Newcastle, King's College London and University of Sheffield.
Project start
June 2021.
Project end
May 2027.
Project summary
The problem
People with severe mental health problems such as schizophrenia and bipolar disorder often die 15-20 years earlier than those without, and this difference is getting bigger. Most of these early deaths are caused by preventable health problems such as heart and lung disease. One change that can help people to live longer is being more physically active. This can lower the risk of major illnesses; such as stroke and cancer by up to half. Leading health organisations have said that encouraging people to be more active is as important as encouraging stopping smoking. People with mental illness spend more time sitting still than people without mental health problems.
What we will do
We are a group of people with direct experience of mental ill health, working collaboratively with the Universities of York, Sheffield, Sheffield Hallam, Leeds, Kings College London and Northumbria together with the NHS to lower this difference in life expectancy. This study will help us understand the challenges faced by people with mental illness in becoming more active. In this project we will develop and test ways to support people with mental illness to become more active. We will ask people what types of physical activity suit them best, and the difficulties they encounter in moving more. We will then use this to work with NHS staff, service users and carers to develop a physical activity programme to help people become more active and spend less time sitting still. We will test the programme and change it where necessary. Finally, we will conduct a fair test (called a randomised controlled study) between the new physical activity programme and what we have now. This will tell us whether the programme can benefit people who use the NHS. We will also look at costs to see if the programme is good value for money. This will help people who decide priorities in the NHS to choose whether to invest in physical activity programmes.
Involving the public
People who use mental health services (and people who support them) have worked to develop this proposal, and they will work together throughout the SPACES programme. They will contribute to the running of the project and in designing an acceptable physical activity programme. Service users and carers will be involved in all stages of the project including communication of results to public, healthcare, research and physical activity staff.
Impact
The SPACES programme has the potential to help people with mental ill health to live longer, happier and more equal lives. This could also mean that the NHS does not have to treat long term physical problems, which increasingly consumes a large portion of the small amount of money that it is allocated.
Project website
Who is the funder?
NIHR Research for Patient Benefit.
What is the grant award?
£249,883
Who is involved?
Sheffield Health and Social Care NHS Foundation Trust, Leeds and York Partnership NHS Foundation Trust, Leeds and York Partnership NHS Foundation Trust, and University of Sheffield.
Project start
October 2024.
Project end
April 2026
Project Summary
Aim: We want to improve post-diagnostic support for Autistic adults. A diagnosis alone does not provide enough information to plan appropriate support. It also does not give people tools to understand their individual autistic profile and advocate for their needs. Autistic adults want to know what their diagnosis means to them and to have an easy way to communicate this to others, e.g. potential employers. We want to test whether a Strengths and Needs Assessment we have developed could help. This assessment could, ultimately, improve the quality of life of autistic adults.
Background: Just 22% of Autistic adults are employed and many experience poor mental health. Quality of life could be improved if Autistic adults received more appropriate post-diagnostic support and if they were better informed about what may help them to manage their own situation.
Design and Methods: We will offer our Strengths and Needs Assessment to 36 Autistic adults recently diagnosed across three NHS clinical services. The assessment considers personal abilities, day-to-day activities and things in the environment that may help or hinder everyday life, e.g. lighting, noise levels, mode of communication. Completion of the assessment produces a personalised report that an Autistic adult could use to help them with self[1]management and clinicians could use to help plan post-diagnostic support. We will compare scores on quality of life and mental health questionnaires between the 36 Autistic adults who completed the assessment and 36 Autistic adults who weren't offered it 3 months after being invited to participate in the trial. We will ask all autistic adults what they thought about the trial procedure at the end including what they did and didn’t find helpful. We will also ask clinicians what they thought about the trial procedure. If the trial procedure and assessment is acceptable to autistic adults and clinicians in this small-scale trial, this will help us to plan a large-scale trial.
Involvement: This research proposal has been co-produced. Development work that led to this proposal began in 2022 with a series of five workshops (in part supported by NIHR PPI funds). This proposal has been developed because Autistic people have told us that they want an individualised support plan as part of a post-diagnostic support package. A key priority for the Autistic community is to receive appropriate and consistent support. Autistic adults will be involved in project design and planning, assessment refinement, and sharing of findings.
Dissemination: Project findings will be shared via free to read academic publications, a public-facing workshop and online Easy Read reports.
Project website
ISRCTN - ISRCTN10283350: Evaluating a strengths and needs assessment for autistic adults
Who is the funder?
NIHR Programme Development Grants
What is the grant award?
£153,001.50
Who is involved?
Sheffield Health and Social Care NHS Foundation Trust, University College London, University of Sheffield, York St John University, ADIRA Mental Health and Wellbeing Services C.I.C
Project start
October 2024.
Project end
March 2026
Project Summary
This project is being led by Adira, a survivor-led mental health and well-being organisation that supports people of African-Caribbean heritage in Sheffield. The aims are 1) to explore how health researchers and can work more positively with people of African-Caribbean heritage; 2) to start having conversations about the harms that mental health services can cause the African-Caribbean communities in the UK; 3) to think about how research and practice in this area can improve.
The background to this work is the lived experience of Adira service users and leaders, who have suffered the harms both of mental health services and of health researchers who try and carry out research without building relationships with community members. The team at Adira want to try something different and use creative filmmaking to try to do research in a more inclusive way and to open up conversations on difficult topics.
Together, we are a team of researchers from three universities and members of Adira, and we have planned three parts to this project. The first part will involve a collaborative filmmaking process on the topic of health and social care harms. We will evaluate this process to understand how Adira members find it. The second part will be a participatory research project, using the film as a tool to explore perspectives of people with lived and professional experience of mental health services. This part will also involve reflecting on the process and thinking about how researchers can work on sensitive topics with people of African-Caribbean heritage. The final part is sharing our learning. This will include a two-part film (both the film on service harms, and a second part which will capture people’s responses), a report of the key findings and recommendations for researchers
Project website
To be provided
Who is the funder?
NIHR Programme Development Grants
What is the grant award?
£136,485.36
Who is involved?
Sheffield Health and Social Care NHS Foundation Trust, Bangor University, University of York, Sheffield Hallam University, Tees, Esk and Wear Valleys NHS Foundation Trust, and University of Sheffield.
Project start
April 2024.
Project end
September 2025
Project Summary
The problem: People with severe mental illness die 15-20 years earlier than those without, and this difference is getting bigger. Most of these early deaths are not due to mental health conditions but lifestyle-related illnesses such as heart and lung disease. Increasing physical activity is one change that can help people to live longer. Health organisations argue that helping people to be more active is as important as supporting them to stop smoking.
What we have done so far: We received funding to develop and test ways to support people with mental illness to become more active. We asked people what types of physical activity suit them best, and the difficulties they encounter in moving more. We worked with National Health Services (NHS) staff and service users to develop a support programme (SPACES) to help people with mental illness become more active and spend less time sitting still. The intervention we developed lasts 18 weeks, and people have found it helpful. Service users and NHS staff told us that it was important that we helped people stay active once the intervention ended. One way to do this is to support people to take part in community groups or classes that offer physical activity.
What we plan to do next: We are setting up a project called Co-SPACES, which looks at how we can support people to get involved with their community’s physical activity groups. We will talk to people who have delivered the SPACES intervention (Physical Activity Coordinators) and ask them about how they worked with community physical activity groups, classes and teachers and what difficulties they experienced. We will also talk to people in communities who provide these groups and classes and ask them what support they need to involve people with mental illness in their programmes. We will use this information to develop training for the SPACES Physical Activity Coordinators and to create an information pack for community physical activity providers.
Involving the public: People who use mental health services have been working with us throughout the SPACES programme. They will attend study meetings and help us design the training module and support material. Service users and carers will be involved in all stages of the project, including communicating the results to the public, healthcare, research, and physical activity audiences.
Impact: Co-SPACES has the potential to help people with mental ill health stay active after the SPACES intervention. This will help them to live longer, happier, and healthier lives. This could also help the NHS treat fewer long-term physical health problems, leading to more NHS funds being available for other things.
Project website
Who is the funder?
NIHR Programme Development Grants
What is the grant award?
£151,414.35
Who is involved?
Sheffield Health and Social Care NHS Foundation Trust, University of Sheffield, University of Oxford, The University of Keele, Shipshape Health & Wellbeing Limited, Sheffield African Caribbean Mental Health Association Limited
Project start
October 2024.
Project end
September 2025
Project summary
Type 2 diabetes (T2D) is a health condition that causes sugar levels in the blood to become too high, and has serious health consequences. We used to think that people would have T2D for the rest of their lives. Thanks to research, we now know that people can get remission of their diabetes – this means their blood sugar levels can go back to being normal, and they can come off their diabetes medication. This research has been so successful that the NHS now offers a T2D remission programme, supporting people to lose weight using meal replacement products, leading to remission. Unfortunately, data shows that people from minority ethnic communities – including South Asian and Black communities – are less likely to take part in NHS remission programmes, and when they do, they are less likely to get remission of T2D. We don’t know why this is. It could be because the diets are not suitable for the way people from these backgrounds eat, or because there are biological differences in how different ethnic groups respond to weight loss or diet. For example, there is evidence that people from South Asian and Black ethnicity have a different kind of T2D than people of White ethnicity. There is also evidence that people from different ethnicities respond differently to the same foods. Many people from South Asian and Black communities have told us that the NHS T2D remission programme that uses meal replacement products is not suitable for them. They also have their own ideas for research in this area. The aim of our project is to put the South Asian and Black communities in the driving seat – and tell us where T2D remission research should go. Our team from the Universities of Sheffield and Oxford will work with community groups in Sheffield and Oxfordshire. We plan to train six researchers from the community to help lead this project, with the support of wider team. We will hold a series of three discussion groups. Firstly, we want to get the communities up-to-date with T2D remission research. Secondly, the communities will discuss their own research ideas. The academic teams will be there to answer any questions the communities have. In the final session the communities will get together to choose which research ideas they think should go through to a main programme grant. We will then apply for further funding to do the research that communities have identified as important to them. The communities themselves have told us of the need to “change the faces around the table”. Therefore, we will provide training and career development plans for the six researchers from the community so they can lead on future research.
Project website
To be confirmed
Who is the funder?
NIHR Programme Development Grants
What is the grant award?
£152,652.84
Who is involved?
Sheffield Health and Social Care NHS Foundation Trust, Disability Sheffield Centre for Independent Living Limited, University of Sheffield, Sheffield Hallam University, Heriot-Watt University,
Project start
November 2024
Project end
October 2025
Project summary
Background There are around 700,000 Autistic adults in the UK. Autistic people often have poor health outcomes and difficulties accessing healthcare. Previous research hasn't included Autistic people from diverse backgrounds, like those from minority ethnic groups, low-income households, or those with learning disabilities. This means we don't know how to provide the best health and social care for those who are most disadvantaged.
Aim This project will build partnerships with Autistic adults in Sheffield who are from groups that are under-represented in research. We will run workshops through community groups. We will use creative activities like visual art, writing and drama to help people share their experiences of health and social care. We want to try different approaches to see what works well with these groups. The goal is to understand how to better support autistic people’s health and wellbeing.
Methods We will form a steering group of 4-6 Autistic adults to guide the project and co-design the workshops. We will run four creative workshops in the community using different creative arts activities to find out which approaches work well. The workshops will create visual maps to highlight health and social care issues faced by Autistic people. In a final workshop, the maps will be used to identify where research might tackle the key issues.
Involvement Autistic adults will steer the project and shape the activities in the creative workshops. Their views will generate knowledge about health and social care systems, including priorities for research. We will share the findings from the workshops at community events and in a published report
Outcomes This project will build lasting partnerships between researchers and under-served autistic adults via working with community organisations. It will develop new ways for autistic people to share their experiences which could be used in further research to inform policy priority settings. The end result will be a set of research priorities that reflect the needs of disadvantaged Autistic Adults. This will shape future research to improve health and social care services.
Project website
To be confirmed
Who is the funder?
NIHR HS&DR
What is the grant award?
£832,332
Who is involved?
The University of Sheffield, South West Yorkshire Partnership NHS Foundation Trust,
Sheffield Health and Social Care NHS Foundation Trust
Project start
April 2023
Project end
September 2025
Project summary
Research question: How can Mental Health Trusts implement new roles to maximise benefits for staff, service users and organisations?
Background: New roles are being introduced in mental health services to help with the staffing crisis and provide new career pathways for clinicians. However, the introduction of new roles can be disruptive and have unintended consequences for teams where the new role is placed. There is a need to understand the dynamic effects of reorganisation to ensure that new roles and skill-mix change can benefit service users and both the new and existing workforce and avoid negative impacts.
Aims and objectives: To understand how mental health services can implement new roles to maximise benefits for staff, service users and organisations Objectives: 1. Identify new roles introduced to secondary mental health services (WP1) 2. Generate national overview of new roles implemented, using adapted typology of skill-mix change (WP2) 3. Identify the cultural, service, and professional contexts in which roles are implemented and how these affect the wider functioning of the service (WP2) 4. Identify and describe the boundary work that occurs in practice as a result of the introduction of new roles into the mental healthcare workforce (WP3) 5. Examine the effects of the new roles on (i) service users, (ii) professionals in new roles and (iii) professionals in existing roles bordering the new roles (WP3) 6. Use the findings to produce both generic and role-/context-specific guidance on how to effectively implement new professional roles in NHS mental healthcare services (WP4)
Methods: WP1 is a mapping exercise to discover what new roles have been implemented in mental health services across the country. This involves conducting telephone interviews with heads of HR or workforce leads in all 56 English mental health Trusts. WP2 is a stakeholder engagement exercise with 20 key informants including policymaker, Trust, clinical and service user input to test/refine a typology of skill-mix change in mental health services and generate logic models. WP3 includes 8 case studies across 4 Trusts, involving non-participant observation of teams where the new roles are implemented. Case studies also involve semi-structured interviews of clinicians, managers and service users affected by the change. WP4 integrates findings and involve cross-case analysis as well as dissemination activities. Timelines for delivery: The project will last 26 months. A 3-month Set-up phase will lead into WP1 which will overlap with WP2. WP1 and 2 will be completed before the start of the WP3 case studies in month 11. The 4 case studies in WP3 take place over 12 months with the final 3 months (WP4) dedicated to completing the analysis, dissemination, and impact activities. PPI will be embedded throughout. Anticipated impact and dissemination: New knowledge generated by this study will facilitate skill-mix change in mental health and in other healthcare settings, to the benefit of service users and both new and existing staff. The study findings will refine models of skill-mix change and generate rich evidence on forms of boundary work.
Findings will be disseminated through focused briefing documents and interactive workshops to explain skill-mix change in practice and offer structured guidance and recommendations on good practice with multiple stakeholders leading or affected by workforce transformation in mental health services and across the NHS.
Project website
Who is the funder?
NIHR Research for Patient Benefit.
What is the grant award?
£256,209
Who is involved?
Sheffield Health and Social Care NHS Foundation Trust, University College London, Bangor University, University of Sheffield, Tees, Esk and Wear Valleys NHS Foundation Trust
Project start
September 2024.
Project end
August 2026
Project summary
The problem: Tooth decay and tooth loss can have a big impact on general health and quality of life, and cause pain and difficulty when eating. This can reduce self-esteem and lead to problems in everyday life. People living with severe mental illness are much more likely to have tooth decay and to have lost their natural teeth. This can be due to several challenges related to mental illness, their use of medication and lack of support from health services. Oral health is often a low priority in caring for people with mental illness. We aim to create a support system in mental healthcare settings that will support them to maintain regular oral hygiene and help them enjoy good oral health. What we will do: We have already talked to people who experience mental ill health, their families and carers and mental health staff. We know their views on what makes good oral health easier and the problems they can often face. This gives us some initial ideas of what a good support system might look like. Our project will build on these ideas over two phases. We will work with people who experience mental ill health, dental health experts, mental health services staff and commissioners in both phases. Firstly, we will hold workshops with people who experience mental ill health, their families and carers, dental health experts and mental health staff to agree what our support system will look like. Secondly, we will ask people who experience mental ill health to test out this support system. We will ask them what they thought of it and if they found it helpful or not. We will ask people to tell us how often they brushed their teeth before and after receiving support, and about their awareness of how to prevent dental diseases. We will also look at costs to see how much this system might cost the NHS.
Involving the public: People who use mental health services have already worked with us to develop this proposal. We will continue to work together as we run our project. We will invite people who use mental health services to contribute to the project by attending meetings and helping us to design our support system. Members of the research team have experience in supporting people from underserved communities to take part in research. We will work to ensure that we include people from groups who are not often involved in research.
Impact: Our project could improve the oral health of people who live with mental illness. This would increase their quality of life. It could also lessen the burden on dentists and health services by reducing dental diseases through prevention and early treatment.
Project website
Who is the funder?
MRC HS&DR
What is the grant award?
£3,484,216
Who is involved?
Sheffield Health and Social Care NHS Foundation Trust, McPin Foundation, Plymouth University, University of Cambridge, University of Exeter, University of Huddersfield, University of Oxford, University of Sheffield,
Project start
April 2024
Project end
March 2029
Project summary
Borderline personality disorder (BPD) is a complex, common and disabling mental health condition. BPD problems include difficulties in relationships and feelings of emptiness, managing emotions (which can often be intense and overwhelming and triggered by fear of abandonment) and impulsiveness, especially self-harm and suicidal feelings. Sadly, around 10% of people who are diagnosed with BPD die by suicide, making it a life-threatening condition. Many people, including some professionals, don’t believe that BPD should be used as a diagnosis, partly because BPD symptoms often overlap with other mental health conditions. What is agreed is that people with BPD problems experience stigma, and perhaps to a greater extent than people with other mental health conditions. People with BPD often find themselves accused of attention-seeking and this is sometimes used as a reason to exclude them from services.
BPD runs in families, and it is most common in people who have experienced trauma, especially when at a young age. It is thought that trauma early in life affects brain development and especially the response to stress. We don’t know enough about how to help with people who experience these problems. Psychological treatments help but are hard to access, and although over 90% of people diagnosed with BPD are prescribed psychiatric drugs there is no scientific evidence that these actually do much good. The voices of people with lived experience of BPD problems are rarely heard in the scientific literature and this needs to change. We don’t yet know if removing BPD from the list of mental health diagnoses would be a good thing but we are sure that understanding will only improve by working with people who have experienced these problems. We are planning a programme of research (called a mental health platform hub) over 5 years to transform care experiences and outcomes for people who experience BPD problems. We believe that the key lies in understanding how experiences in peoples’ everyday lives trigger intense emotions or feelings, or cause people to harm themselves, for example.
We will invite people with BPD problems to become part of a group of people who will help us select and answer the most important questions. We’ll include people who might not identify as having BPD as a diagnosis and will offer payment (vouchers) for completing questionnaires and interviews and for taking part in different studies. One of these will use a method called ecological momentary analysis (EMA) and involves wearing a smartwatch and answering short questions when prompted by a smartphone app a few times a day, for 3 weeks. We will also look at the data in anonymous electronic health records, using artificial intelligence, to see if we can predict which particular BPD problems lead to persistent or worse problems over time, to help find more precise ways of helping more who experience these. We will find ways to make sure that being part of this research feels worthwhile, so that people will want to continue. There will be opportunities to help with the research in other ways, including being part of workshops to develop more personalised ways of helping people with BPD to manage their feelings and emotions, and to develop ways to support professionals. Together with the people who take part, we will share our findings to raise awareness of BPD.
Project website
https://www.ukri.org/opportunity/mental-health-platform-hubs
People with severe mental ill health currently experience a bigger mortality gap compared to the general population, partially due to preventable physical health conditions linked to health risk behaviours such as smoking and lack of physical activity. This study aimed to benchmark health risk behaviours in people with severe mental ill health by inviting people with a diagnosis of severe mental ill health to take part in a short questionnaire about demographics, health risk behaviours and motivation to change those behaviours. It found that people with severe mental ill health are more likely to smoke than those in the general population and are at risk of not meeting the government guidelines regarding physical activity and fresh fruit and vegetable consumption. However, people are motivated to change these behaviours and it is therefore recommended that interventions are developed to help them do this.
If you wish to find out more information about the network behind this study, click here.
People with a lung condition and severe mental illness can find it difficult to access primary care. Research outlined the barriers faced by people with both of these long-term conditions. It suggested that social prescribing could help overcome some of the problems.
This study included people who had both a severe mental health condition (such as psychosis), and a lung condition that causes breathing difficulties (asthma or chronic obstructive pulmonary disease, for example). It found that people with both conditions could be disabled and isolated.
The study concluded that this group of people need support to navigate the healthcare system. Regular contact with the same clinician was helpful. It recommended that social prescribing could help them build support networks.
You can find out more about our involvement in this project here.
SPACES (Supporting Physical Activity through Co-production in people with Severe Mental Illness) is a study which aims to develop an intervention to increase physical activity created with and for people with severe mental ill health (SMI), their carers and professionals involved in physical activity and/or severe mental ill health.
The SPACES team recently published their findings, the full report can be accessed here.
Dementia is an umbrella term for diseases that lead to a decline in cognitive abilities such as memory and other thinking skills, however dementia also affects behaviour, feelings, and relationships. People living with dementia sometimes experience psychological symptoms like anxiety, apathy, depression, or distress.
In the HOMESIDE study, the study team wanted to find out whether family caregivers could use music and reading activities with the person with dementia they care for to help alleviate these psychological symptoms. They were inspired by the success of professional therapists using music therapy in nursing homes and wanted to know if similar benefits could be achieved at home by family caregivers
The HOMESIDE study primary findings have been published in eClinicalMedicine, which is part of The Lancet Discovery Science. The key findings can be accessed here.
Research Summary
Problems with Social Communication (PSC), including Autism Spectrum Disorders (ASD’s), are lifelong and associated with difficulties in social interaction, communication and restricted, repetitive behaviours. Most research has focused on these issues in childhood. Little is known about how common ASD’s and other PSC are among adults, including those admitted to psychiatric hospitals.
Identifying people with ASD’s and other PSC will enable them to access services appropriate for their needs that can improve their quality of life. There is a risk that these people are otherwise incorrectly diagnosed with other mental disorders, and offered treatments unlikely to be helpful for them. Nevertheless, some people have both PSC or ASD and other mental and physical health conditions (comorbidities), though the extent of this problem is poorly understood.
This study aims to:
(1) Estimate how common ASD’s are amongst adults who have been admitted to psychiatric hospitals
(2) Examine the association between other mental and physical health conditions in this population.
We will collect data on patient’s ASD test scores (on questionnaires designed to identify possible ASD’s and PSC) and physical and mental health (Phase 1). A subgroup of patients, selected via stratified random sampling according to test scores, will be invited into Phase 2, involving comprehensive ASD diagnostic criteria testing and being interviewed about their other mental and physical health conditions. Patients with intellectual disabilities will bypass Phase 1 ASD tests, progressing directly to Phase 2, where they will be also tested with a questionnaire on stigma experiences.
The study’s findings aim to improve understanding of how common ASD’s are among adults admitted to psychiatric hospitals, and the healthcare needs of this group. This will directly benefit patients with ASD, via enabling us to design inpatient services better suited to identifying them in a psychiatric hospital setting and meeting their healthcare needs.
Summary of Results
Adults who had been admitted to acute psychiatric hospitals took part in the study Of the 27 participants without a learning disability who went onto receive an autism diagnostic assessment, 9 (33%) were found to be autistic (4 of these 9 participants had a previous diagnosis of autism prior to taking part in the study). After adjusting for weighting, non-response and outliers, we estimated that 13.7% (95% CI 6.6-20.7) of this patient group are autistic. The autism quotient (a questionnaire used in this study to select for people to undergo diagnostic assessment) demonstrated acceptable-excellent diagnostic accuracy.
Of the 13 participants with a co-occurring learning disability, 7 (53.8%; 95%CI 22.5-85.2) met autism diagnostic criteria on assessment (6 had a prior diagnosis).
After adjusting for the different age and sex distributions of the different groups, cataracts and eyesight problems were significantly more common among autistic participants.* In conclusion, autism is highly prevalent among adults admitted to acute psychiatric hospitals, where autism identification can be improved through routine screening.
*Please note that with respect to the assessment of co-occurring physical and mental health conditions, further analysis has to be conducted as additional Phase 1 data has been since received from other (non-Leicester) sites [i.e. between January to June 2021] (this will not affect the autism prevalence estimate).
Summary of Research
This study aims to explore the psychological impact of COVID-19 outbreak and the resultant restrictions in terms of behavioural, emotional and social factors. Questions will be asked of the data collected to see what factors may be supportive or more detrimental to wellbeing. The general public including health professionals and those with pre-existing mental health conditions will be invited to complete the survey. This will enable identification of vulnerable groups who may experience more extreme or differing impacts to the rest of the population. Additionally the international aspect of the survey will identify any cultural differences, differences caused by the scale of the outbreaks effect across countries and any differences to government responses and restrictions. The questionnaire will be repeated after six months to allow for the development of the epidemic and measure the impact of restrictions being in place for a longer time period. This survey will greatly enhance our currently limited understanding of how such epidemics impact on the populations’ wellbeing. The COVID-19 outbreak is an unprecedented event in modern times and as such its impact cannot be guessed and therefore needs to be measured to inform future service provision and also any future similar circumstances.
Summary of Results
The Psychological Impact of Covid-19 study was an online questionnaire study where people from across the globe were able to volunteer to answer questions about the Covid-19 pandemic, government guidance and their emotional health. The aim was to understand how such natural difficulties affect people’s mental health and wellbeing and help plan for future. So far, the group have published several papers about the results of the study.
The first publication was an early analysis of the first three weeks of data with a focus on healthcare professionals as they were frontline in the fight against Covid. The results showed that Healthcare professionals reported mild depression and anxiety more than non-healthcare professionals. Also, 32% of participants reported suicidal thoughts and those that reported suicidal thoughts before Covid-19 were less likely to communicate with friends or family. It was found that the categories of people most likely to follow Covid government guidelines were being female and increasing age. Those less likely to follow included higher education, homeowners, key worker status, high alcohol, drug use and participants with pre-existing suicidal thoughts.
Rathod, S., Pallikadavath, S., Young, A. H., Graves, L., Rahman, M. M., Brooks, A., ... & Phiri, P. (2020). Psychological impact of COVID-19 pandemic: Protocol and results of first three weeks from an international cross-section survey-focus on health professionals. Journal of Affective Disorders Reports, 1, 100005.
This publication looked at the face covering policy that was in place during Covid-19, when Covid-19 restrictions were relaxed and how this may have affected mental health. The results showed that during the lockdown period and when the lockdown measures were relaxed, reported levels of anxiety and depression were the same, but were more when wearing a face covering was compulsory. The levels of distress caused by Covid-19 decreased when rules were relaxed and even further decreased when the face covering policy was introduced.
Rathod, S., Pallikadavath, S., Graves, E., Rahman, M. M., Brooks, A., Soomro, M. G., ... & Phiri, P. (2021). Impact of lockdown relaxation and implementation of the face-covering policy on mental health: A United Kingdom COVID-19 study. World Journal of Psychiatry, 11(12), 1346.
This paper looked at suicidal thoughts during the Covid-19 pandemic and the times where restrictions were put in place by the government. Results showed that participants who were younger and participants who were male reported having more suicidal thoughts. During the three different time periods that volunteers completed the survey, 31% participants reported experiencing suicidal thoughts in phase 1, 30% in phase 2 and 19% in phase 3.
Rathod, S., Phiri, P., Pallikadavath, S., Graves, E., Brooks, A., Rathod, P., & Lin, S. (2022). The Psychological Impact of COVID-19 Pandemic on Suicidal Thoughts in the United Kingdom. BJPsych Open, 8(S1), S69-S69.
The following papers have been published by colleagues who collaborated from Canada and India Turner, B., Switzer, A., Welch, B., Legg, N., Gregory, M., Phiri, P., Rathod, S., Paterson, T., Psychological mediators of the associations between pandemic-related stressors and suicidal ideation across three periods of the COVID-19 pandemic in Canada, Journal of Affective Disorders, Volume 324, 2023, 566-575, ISSN 0165-0327,
Bhargava, R; Kathiresan, P, Bakhara, Y, Sharma, M. Phiri, P, Rathod, S. Impact of COVID-19 on Mental Health of Aged Population in India: An Online, Cross-sectional Survey. World Social psychiatry, 211-216.2022
Gregory, M.A., Legg, N.K., Senay, Z., Barden, J., Phiri, P., Rathod, S., ... Paterson, T.S.E. (2021). Mental Health and Social Connectedness Across the Adult Lifespan in the Context of the COVID-19 Pandemic. Canadian Journal on Aging / La Revue canadienne du vieillissement 40(4), 554-569.
Research Summary: Hearing voices is one of the most common symptoms of schizophrenia. We aim to learn why some patients listen to and believe the content of distressing voices. This will enable the later development of psychological therapies which enable patients to disengage from distressing voice content. A crucial step in this process is to develop two questionnaires: i) an assessment of the degree that people listen and believe distressing voices ii) an assessment of the reasons why people listen and believe distressing voices. The items making up each of these questionnaires have come from i) interviews with people who hear distressing voices, ii) a lived experience advisory panel and iii) clinical psychologists with experience of working with people who hear voices. The questionnaires will be tested to check that they measure what we intend them to measure (validity) and are reliable. We will also remove redundant questions which will shorten the questionnaires. To do this we will conduct one study in two part (A&B). Part A will assess the reliability and validity of the two new measures (30-40 minutes). Shortened versions of the questionnaires will be developed and reliability and validity reassessed in a new sample (part B, 30-40 minutes). A sub-sample of participants in part B will complete the new measures (10 minutes) one week later to assess whether the results are stable over time (test-retest reliability). A large number of participants are required to assess validity and reliability. We will therefore recruit participants via the Clinical Research Network (CRN), which has research assistants based in NHS Trusts across the country. The study is funded by the National Institute of Health Research. Participant will be reimbursed £5 for participation. Recruiting via the CRN is a method which has been successfully used by our research group, with no risks identified. Summary of Results: Hearing voices is one of the most common symptoms of a schizophrenia diagnosis, experienced by around 70% of people with this diagnosis. Two thirds of voice hearers experience voices which make derogatory and threatening comments. Our theoretical perspective is that when the patient listens to this negative voice content, and believes the comments to be true, this will exacerbate distress. Our previous work interviewing patients who hear derogatory and threatening voices (DTVs) indicates that there are understandable reasons to listen and believe. This study aimed to develop questionnaires to assess key constructs within this new psychological framework and carry out the first quantitative test of the theory. 38 participating NHS Trusts recruited 591 patients who hear derogatory and threatening voices. They completed item pools to assess the degree of listening to and believing DTVs, and the reasons for doing so. 52% believed the derogatory and threatening comments most or all of the time. Listening was formed of actively listening out for the DTVs and/or passively listening (without any intention). Higher endorsement of listening and believing DTVs predicted higher distress. There were seven groups of reasons for listening and believing: to better understand the threat; being too worn down to resist; to learn something insightful; being alone with time to listen; voices trying to capture attention; voices sounding like real people; and voices sounding like known people. Each type of reason was associated with listening and believing DTVs. Feeling worn down was particularly strongly associated with listening and believing. A framework of listening and believing negative voices has the potential to inform the understanding and psychological treatment of voice distress.
The end of study report about this can be found here.
Summary of Research
People with severe mental ill health such as schizophrenia and bipolar disorder experience some of the most profound health inequalities of any sector of society and are at greater risk of being affected by COVID-19 and the pandemic restrictions. There are multiple reasons for this; they are more likely to live in deprived circumstances and are less likely to be digitally connected and therefore may experience difficulties in maintaining social networks and accessing services which have gone online. Furthermore many people with severe mental ill health have long term physical health problems, putting them in a vulnerable group that must isolate for long periods of time. \nThis project is called the Optimizing Wellbeing during Social Isolation (OWLS) study. We will explore how people with severe mental ill health experience the current pandemic restrictions and their social consequences. In particular we will explore the ability of people with SMI to access both primary care and mental health services, whether they are digitally connected and how they utilise digital media and the internet, whether they experience feelings of social isolation and loneliness and finally if they have modified their health-related behavior to reduce the risk of COVID-19. The project is a mixed methods project involving a quantitative survey and qualitative interviews. At the center of the project is a cohort of people with severe mental ill health who have taken part in a previous survey about health related behaviours and who have consented to re-contact. We will use a sampling framework to contact a range of participants from the cohort and invite them to take part in the survey, a sub-section of whom will be invited to take part in a qualitative interview. Data from the OWLS study will be analysed and recommendations made on targeted strategies to mitigate the risk of COVID-19 and the impact of the pandemic restrictions for this vulnerable population.
Summary of Results
OWLS summary - review People with severe mental ill health (SMI) experience significant health inequalities compared to people without this diagnosis. There is potential for these inequalities to become more significant as a result of the health risks and restrictions linked to the COVID-19 outbreak. The OWLS study was set up to explore how the pandemic and its associated restrictions have affected people with SMI and suggest ways to mitigate against any widening health inequalities. 367 participants were recruited from a range of demographics within England. Data relating to behaviours known to be harmful to health, showed that whilst some people reported smoking less during the pandemic (12%), over half of the respondents who smoke, were smoking more than before the pandemic (55%). Results from the study show that just under half the people who took part was doing less physical activity than they did prior to the COVID-19 restrictions. Of those who drink alcohol, 29% said that they were drinking more and 27% said that they were drinking less than usual. From the data, the increase in the behaviors mentioned above was associated with being younger and self-reporting of a deterioration in physical health. The increase was not associated with gender, level of deprivation, ethnicity and self-reported deterioration in mental health. During the pandemic, living alone and being younger were associated with being lonely among people with SMI but the same factors were also associated with increased loneliness among the general population. Feelings of social connectivity were associated with living with others. The majority of respondents have Internet access and a device to connect with. Around half of the respondents felt that they had a good to outstanding knowledge of the Internet. There is an important minority (more than 10%) that does not own any digital device or do not have access to the Internet from home. Around a third of all participants expressed interest in learning more about how to use the Internet. Those who were more able to use the Internet were likely to be younger and have bipolar disorder rather than a psychosis-spectrum disorder. Most of the people who said they were using the Internet a lot during the pandemic, also said they felt like their mental health has declined since the beginning of the pandemic. However, it is possible that this is due to the personal characteristics of these people, like for example their diagnosis. The three biggest barriers to Internet use were people not being interested in using the Internet, finding the Internet too difficult to use and security concerns. The most common reasons for using the Internet were, accessing information/ entertainment, staying in touch with friends and buying things other than food. The majority of people reported that they had been able to access both physical and mental health services when they needed to and a face-to-face meeting increased the likelihood that people felt that their needs had been met. Almost a third of people who weren’t currently receiving support from mental health services thought that they would need support in the next year and of those currently receiving support about a quarter thought they would need additional support in the next year. A further quarter of those currently receiving support felt that they might need additional support in the next year. In summary people with SMI will need additional support to prevent worsening of existing health inequalities, support will particularly be needed to help people stop smoking and take more exercise in addition to further support from mental health services. Furthermore support will need to be delivered in a way that works for the individual and not assume that everyone had access to, and can use the internet, or that appointments delivered remotely provide people with the care they need. Recommendations for the future Support people with SMI to enhance their digital skills and increase motivation to use the Internet. Greater support might be needed for older people with psychosis spectrum disorders. The connection between being online and worse mental health warrants greater exploration to understand why this is the case, and to make recommendations about positive use of the Internet. Services should take into consideration individual’s needs, recognizing that needs may fluctuate and allowing patient choice in the mode of delivery and taking into account the digital divide in this population. Plans need to be put in place for increasing funding for services and creating additional low intensity face to face services in addition to what is already available to allow people’s needs to be met as quickly and easily as possible to mitigate against greater longer term consequences, both in terms of physical and mental health. SMI should be recognized along side other sectors of society found to be most adversely affected by the COVID- 19 restriction sand provided with targeted extra support to prevent additional ongoing adversity for one of the most vulnerable sectors of our society.
Research Summary
This study is designed to establish the best treatment for the management of agitation and/or aggression in people with dementia. Agitation and aggression are common in people who suffer from dementia and can cause problems for the patients, families and the people caring for them. There are medicines available to treat agitation, but it is not clear which treatments work best for people with dementia. This study will compare 2 medicines with a placebo (a tablet designed to look like a medicine but that has no active component) to see if either are suitable for treating agitation in dementia. The study is divided into 3 parts: the consent and assessment part is likely take a few weeks; the treatment part will take 12 weeks; and the follow up part will continue to 12 months after treatment starts. Patients will be consented alongside a family or paid carer who is willing and able to consent to provide information for the study and to help the patient take the medication they will be given. Patients will continue to receive care from their doctors and other health and social services in the usual way whilst they are in the trial. The patient will be asked to take 1 tablet for the first 2 weeks of treatment in the trial, 2 tablets in the next 2 weeks and 3 tablets for the remaining 12 week treatment period (unless there are concerns about side effects resulting from them taking the medication). The patient, their carer, their doctors and the research workers will not know whether the patient is taking either of the active medications or the placebo until the end of the trial, although it is possible to find out which medicine they are taking in the event of a medical emergency.
Summary of Results
This is a trial with negative findings but important clinical implications. The data suggests that mirtazapine is not clinically effective (compared to placebo) for clinically significant agitation in dementia. Our findings suggest that there is little reason to recommend the use of mirtazapine for people with dementia who experience agitation. Effective and cost-effective management strategies for agitation in dementia are needed, particularly where non-pharmacological approaches have been unsuccessful, and for people with dementia and their carers living in community settings.
241 participants were recruited and randomised (102 mirtazapine, 102 placebo and 40 carbamazepine) The carbamazepine arm was discontinued in August 2018 due to slow recruitment and the carbamazepine versus placebo analyses were therefore statistically underpowered.
The primary outcome was change in Cohen Mansfield Agitation Inventory (CMAI) at 12 weeks. Mean scores at 12 weeks were not significantly different between participants receiving mirtazapine and placebo (-1.74, 95% CI -7.17 to 3.69, p=0.53). The number of placebo participants with adverse events (65/102 [64%]) was similar to that in the mirtazapine group (67/102, 66%). However, there were more deaths in the mirtazapine group (n=7) by week 16 than in the placebo group (n=1), with post-hoc analysis suggesting this was of marginal statistical significance (p=0.065) and this mortality difference did not persist at 6- and 12-month assessment.
Severity of agitation decreased in both groups at 6 weeks by around 10 CMAI points and continued to be lower than baseline scores at 12 weeks. This change between baseline and 6-week and 12-week outcomes is shown by the separation in 95% confidence limits. At no point was the CMAI difference between the groups statistically significant.
In this study, there were clear decreases in agitation scores overall, with a clinically and statistically significant 10-point drop in the first 6 weeks of treatment, which was then maintained from 6 to 12 weeks; however, this drop was not attributable to mirtazapine because it was also seen in the placebo group. This suggests many cases of agitation will resolve with usual care and without the need for medication.
Summary of Research
Our study will conduct a survey of physical activity behaviours of people with severe mental ill health (SMI) who choose to complete our questionnaire.
The study aim is to provide a benchmark of physical activity behaviours of people with SMI and to try and understand what makes people more likely to take part in physical activity and what prevents people from taking part in physical activity. This survey is being undertaken within the NIHR CLAHRC Yorkshire and Humber Mental Health and Comorbidities Theme.
Summary for Results
This study aimed to understand the attitudes of people with severe mental ill health towards physical activity. Five-hundred and twenty-nine participants completed questionnaires on physical activity patterns, preferences, barriers and motivations. Responses were analysed to explore relationships between individual characteristics and physical activity status. The results suggested that a large proportion of people responding to the questionnaires were insufficiently active and excessively sedentary. Non-compliance with physical activity guidelines was associated with professional inactivity, consumption of fewer than five portions of fruit and vegetables per day, older age, and poor mental health. Participants indicated a preference for low-intensity activities and physical activity that can be done on their own, at their own time and pace, and close to home. The most commonly preferred source of support was social support from family and friends. When asked to identify common motivators to taking part in physical activity, responses favoured improving mental health, physical fitness and energy levels. On the other hand, poor mental and physical health and being too tired were common barriers to taking part in physical activity. The findings of this questionnaire can help to inform physical activity intervention programming for people living with severe mental ill health.
Summary of Research
People with severe mental illness (SMI) have poorer physical health and a shorter life expectancy by around 20 years compared with the general population. This so-called mortality gap is partly explained by higher rates and poorer management of physical long-term conditions (LTCs) such as diabetes. There may be several reasons for this, including the individual’s mental illness and treatment, challenges to engaging in healthy behaviours, and wider barriers to accessing healthcare and support.
Self-management (eg, taking medications, monitoring symptoms, preventing complications, leading a healthier lifestyle) is an important part of staying well with an LTC. Self-management programmes in the NHS help people with LTCs look after themselves but they often do not address the challenges faced when also managing SMI.
The DIAMONDS research programme aims to overcome this problem by developing a self-management intervention to specifically help people with diabetes and SMI to be healthier. The intervention has been developed in partnership with people with mental illness and diabetes, their family members/friends, and healthcare staff. It has been designed to address challenges to self-management, which include poor motivation due to mental illness symptoms and medication; limited support from others for self-management; beliefs about ability to engage in self-management; limited knowledge and skills for LTC management; and beliefs that LTCs require less managing than mental illness. The DIAMONDS intervention is a 16-week programme that consists of daily self-management tasks, weekly 1-to-1 meetings with a trained facilitator (‘DIAMONDS Coach’) and monthly peer-support group sessions.
In this study (phase 3 of the DIAMONDS programme) we will test whether we can deliver our intervention and explore whether it is acceptable to those people delivering and receiving it. We will also test out our research methods so that we can design a larger study in the future to test whether our intervention works.
Summary of Results:
The aim of this feasibility study was to test the acceptability and feasibility of research processes and intervention delivery in preparation for a randomised controlled trial (RCT).
We successfully recruited 30 participants (adults with serious mental illness and type 2 diabetes) from six NHS mental health trusts in the North of England. Recruitment, consent, and data collection processes were confirmed to be feasible and acceptable to both participants and researchers. Data collection included physical measures (height, weight, waist circumference), blood taking (for measurement of glycated haemoglobin, HbA1c at a central laboratory), questionnaires, as well as measurement of physical activity using a wrist-worn accelerometer (activity tracker) and monitoring of sugar levels using continuous glucose monitors.
The DIAMONDS intervention was well received by participants and intervention facilitators (DIAMONDS Coaches). In qualitative interviews we found out that flexibility and participant-centred intervention content were particularly important. We developed methods to assess intervention fidelity (i.e. the extent to which the intervention is delivered as intended) which we will be able to use in the RCT. We also put in place processes to measure health resource use which will be used in the RCT to inform evaluation of cost-effectiveness.
All prespecified objectives and progression criteria were met and the DIAMONDS project will progress to the next stage (RCT). Findings from this feasibility study will directly inform refinements to the intervention and study processes for the RCT.
Summary of Research
Life expectancy is reduced by around 15-20 years for people with severe mental illness (SMI) compared to people without SMI, and this gap is increasing. The majority of these early deaths are due to physical health problems, which are partly preventable and which are related to factors including health behaviours such as diet, smoking and physical activity. Increasing physical activity can improve physical health in everyone and The World Health Organization has said that encouraging people to be more active can be as beneficial as quitting smoking. People with SMI are less physically active than the general population. Supporting people with SMI to increase their levels of physical activity could help to reduce the life expectancy gap.
This study will work with people with SMI, their carers’, health professionals and physical activity experts to develop an intervention aimed at helping people with SMI to increase their physical activity and reduce the amount of time they spend sedentary (sitting or lying down).
Participants will be recruited through the NHS and voluntary sector organisations and research with service users, carers and professionals will be carried out in accessible community venues. This study is work-package 1 and will last approximately 18 months. There will be two focus groups, a workshop and interviews (all qualitative research – about thoughts, feelings and experiences rather than numbers/statistics) which will aim to find out about barriers and facilitators to physical activity, create an intervention to increase and do an initial test of acceptability.
This application is for qualitative approaches to physical activity intervention development (funded by the National Institute for Health Research- Programme Grants for Applied Research). Work packages 2-4 involve further testing of the intervention and are not covered here.
Summary of Results
The SPACES:Quad project aimed to design an intervention to support people with severe mental ill health (SMI) to be more physically active.
Over a 12 month period, the research team gathered information from focus groups to a) identify the barriers and facilitators to physical activity for people with SMI and b) identify effective components of already existing physical activity interventions designed for people with SMI.
The focus groups took place in Sheffield and Leeds and were attended by people living with SMI, their carers’ and health professionals who work with people with SMI and/or in physical activity.
The results of this work was presented to our Consensus Group who met face-to-face over a number of months in central Sheffield. This group was made up of people with SMI, carers and health professionals who support people with SMI. Using the evidence collected as well as their own experiences, the Consensus Group were able to input into the production of the SPACES intervention in collaboration with the research team.
The result of this work is the SPACES Physical Activity Intervention, which includes:
Summary of Research
There is an increasing amount of investment, research and innovation around using digital technologies in novel ways to improve people’s physical health. However, the extent to which these new digital or “mHealth” solutions are accessible, usable and beneficial for people with mental illness is under-researched. Despite people with mental illness already experience drastic disparities in physical health, having a 2-3 fold risk of cardiovascular diseases and ~15 year reduced life expectancy compared to the general population. Continued efforts towards developing digital health solutions for the general population, while neglecting the needs of those with mental illness, may only serve to increase the extent of these health disparities.
The heightened prevalence of cardiovascular diseases (and resultant premature mortality) associated with mental illness become most evident in older adult, populations. However, physical health risks begin from the onset of mental illness – which, for most people, begins before the age of 25. Preventing cardiovascular and metabolic diseases from arising is more feasible and effective than reversing their long-term consequences. Alongside this, younger people are the prime uses of digital technologies, particularly with regards to smartphones. Therefore, discovering how mHealth interventions can be applied to improve physical health and lifestyles in young people with mental illness could present a novel approach for reducing the health risks faced by this group.
However, there is currently a dearth of research in this area. Thus, this survey study is designed to gain some initial insights into the potential of mHealth approaches towards physical health promotion in youth mental health. In particular, the research will examine if/how young people with mental illness currently use mHealth or ‘apps’ for physical health, what their preferred uses of such technologies would be, and their perspectives on ideal components / features of mHealth interventions for improving their lifestyle and physical well-being.
Summary of Results
The study investigated the views of young adults with mental illness on the use of digital technologies, particularly mobile health (mHealth) tools, for promoting physical health. An online survey was conducted withyoung adults aged 16-30, who were diagnosed with mental illnesses and were receiving mental healthcare. In the online survey study, 746 participants completed the initial screening phase in order to gain access to the full survey. Of those, 424 completed it full, and 200 completed it partially. Of the participants, 40% were female and 90.0% were white British. The participants age ranged from 16 to 30 years old, with the average age 24. The majority of patients had a diagnosis of Depression and/or anxiety.
Full analyses of the survey data are still underway, although preliminary examination has indicated that the majority of participants were in favor of digital health technologies for promoting physical health and related behaviors. Features such as health tracking, health coaching, and peer-support were deemed particularly useful.
Almost all participants owned a smartphone or tablet, with iPhones being the most common. Over half of the respondents used apps related to mindfulness or physical activity/exercise, while others used apps for sleep, weight loss and diet. Most found these apps useful, and around a third used them daily.
The study underscores the potential of mHealth in addressing physical health disparities among young people with mental illnesses. By understanding their preferences, more tailored interventions can be designed to promote physical health and prevent cardiometabolic comorbidities. Further research is needed to develop and implement effective digital interventions in mental healthcare settings.
Background to the research
In the UK, it is estimated that 38% of people using food banks have a mental illness. Not having adequate access to healthy food, sometimes referred to as food insecurity, can lead to a range of additional health problems. Levels of food insecurity are higher in Northern England. There is a lack of research, however, on the experiences of people with Severe Mental Illness (SMI) around food insecurity.
Aim(s) of the research
We would like to understand the experiences of food insecurity for adults living with SMI in Northern England. We would also like to find out how we can support people living with SMI to access healthy, affordable food.
Design and methods used
We will work with people living with SMI, a charity, the NHS, and universities. We will employ and train two Peer Researchers (people living with SMI) to help us design an online survey and undertake interviews with people who have SMI. The interviews will ask about how services can be adapted or initiated to help people access healthy, affordable food.
Patient and public involvement
This research came from speaking to service users and they have been involved in writing this application. They told us that they would rather talk about food insecurity to someone with SMI than a researcher. Two people living with SMI will help us with the survey and interviews. Two others will be part of the steering group.
Dissemination
We will use the results to recommend the best way to support people with SMI to access enough healthy food. We will communicate and raise awareness of this research to people working in mental health services and organisations supporting people with SMI. We plan to do more research into new approaches to overcoming food insecurity for those living with SMI.
Summary of results:
What do we know already about the subject?
Food insecurity means that a person doesn’t have enough money to make sure they always have enough food to meet their dietary, nutritional, and social needs.
Food insecurity can lead to a range of additional health problems.
People living with a mental illness are more likely to experience food insecurity than people without mental illness.
What did this study involve?
We carried out a survey of 135 adults with Severe Mental Illness (Schizophrenia, Bipolar Disorder, Schizoaffective Disorder or Psychosis) living in Northern England.
We asked about their experiences of food insecurity.
Peer Researchers (who were people with Severe Mental Illness themselves) then carried out 13 individual interviews asking people about their experiences of food insecurity and how to improve this.
Researchers looked at the results and made recommendations based on these.
What the paper adds to existing knowledge?
Just over half of adults with Severe Mental Illness in this study had food insecurity (50.4%).
There were no differences in food insecurity by age, gender, mental health diagnosis or household income.
There were differences in food insecurity based on location, mental health diagnosis, and number of children in a household.
People with Severe Mental Illness told us that food insecurity is a long-standing issue. They told us about the impact of unemployment, the cost-of-living crisis and fuel poverty on food insecurity. They also described the difficulties they had using food banks such as transport, stigma, and the poor selection of food available.
What does this mean in practice?
Future research should look at actions that can be done to improve food insecurity for people with Severe Mental Illness.
Barriers to healthy food access should be looked into. This might include taking food parcels to people's homes, better quality food in food banks, and tacking the stigma surrounding food banks.
The causes of food insecurity should also be considered.
Information on the results of this study can be found here.
In England, there are an estimated 589,101 dependent drinkers (2016/17), of whom 81.7% are not accessing treatment (Public Health England, 2017). Alcohol misuse is the biggest risk factor for death, ill-health and disability among 15-49 year-olds in the UK, and the fifth biggest risk factor across all ages (Public Health England, 2016). Naltrexone is a drug used to manage alcohol use disorder and has been shown to reduce alcohol consumption in clinical studies. Currently, it can be taken as a daily tablet or given as an injection lasting 4 weeks. If taken as a nasal spray, it is expected to work faster and therefore could be used ‘as needed’ to help reduce cravings for alcohol.
Summary of research can be found here
More information can be found here
Complex mental health difficulties is a transdiagnostic term used to describe patients with mental ill-health who experience repeated episodes of anxiety and depression, with long-term, frequently unpredictable, changes in mood and difficulties in relationships. These patients often fall between services such as IAPT/Talking Therapies and specialist secondary care mental health teams. The care of patients with complex mental health difficulties represents one of the biggest challenges for general practice and the wider healthcare system. The UNSEEN study (Understanding services for people with Complex Mental Health Difficulties) was a two year research study conducted to examine how general practice can better identify people with complex mental health difficulties and provide high quality care. We carried out interviews with patients and GPs and conducted a database study looking for features within electronic healthcare records which might help us identify patients with complex mental health difficulties. In this document we describe what was learnt from UNSEEN and how this might be helpful for GPs in their day to day practice. Complex mental health difficulties include conditions such as personality disorders, dysthymia and complex PTSD. However, rates of coding in electronic health records or formal diagnosis of these conditions are much lower than the actual prevalence rates and therefore many patients go under-recognised. Following the UNSEEN study, we found 7 key areas to think about when considering complex mental health difficulties: (i) early life and antecedents; (ii) emotional regulation difficulties; (iii) social adversity and vulnerabilities; (iv) overlapping mental health-related problems; (iv) comorbid drug and alcohol use/dependence; (v) patterns of prescribing; and (vii) service use patterns. In interviews, GPs recognised this group of patients and highlighted the significant workload and management challenges. GPs expressed frustrations with services and being left holding patients but also described positive experiences of working with newer primary care transformation teams. Continuity of care, allowing time and space for patients, and promoting an empathic culture within the wider practice team were all considered important. Patients with lived experience of complex mental health difficulties described their experiences of trauma and adverse childhood experiences being central to how they made sense of their diagnoses. Their experiences of trying to obtain help from their GP mirrored what we heard in clinician interviews. The challenges experienced on both sides often result in GPs and patients being left frustrated with unsatisfactory consultations and a perception of little progress despite significant efforts. It can be easy to overlook the importance of good general practice in such situations. However, patients in UNSEEN expressed a great deal of positivity towards their relationships with their GPs despite the difficulties experienced. Bringing together what we have learned from UNSEEN, we provide some suggestions to be in consultations. Ultimately, every patient will be different and have their own story and challenges, but we hope that this document will raise awareness and provide a few practical tips in managing complex mental health difficulties.