Previous research studies

Dementia research studies

Background to the study

There are over 700,000 informal carers supporting people living with dementia in the UK. Balancing their own needs alongside their role as carer can be challenging and can have negative effects on quality of life. Providing suitable interventions to support carers maintain good quality of life is essential and a system to monitor the effect of such interventions is needed.

After completing a systematic review which identified and examined the psychometric properties of disease-specific outcome measures of quality of life, researchers at the Centre for Dementia studies, led by Professor Banerjee and Dr Stephanie Daley, found that few instruments specifically measure carer quality of life in neurodegenerative diseases. This finding highlighted the fact that a condition-specific instrument for measuring the quality of life of carers of people living with dementia would be beneficial.

What the study involved

Funded by the Alzheimer’s Society, the Centre for Dementia Studies at Brighton and Sussex Medical School worked in partnership with researchers from University of Kent, UCL, King’s College London, University of Southampton and London School of Economics to develop and validate a robust, condition specific instrument to measure carer quality of life. Interviews and focus groups were carried out to investigate factors which carers felt are important to their quality of life in a caring role. Carers identified their responsibilities and personal needs, feelings of wellbeing, the carer role, feelings about the future, and carer support needs as factors important to their quality of life. These themes were used to inform an initial questionnaire. 

Field testing of the questionnaire was carried out over three stages with 446 carers across Sussex and North London. Using carer feedback, the questionnaire was refined at each stage. Throughout the process, ongoing consultation was maintained with the Lived Experience Advisory Panel for C-DEMQOL. The panel provided valuable feedback and guidance throughout the development and finalisation of the questionnaire.

Field testing was completed in January 2018 and the C-DEMQOL questionnaire was finalised. The questionnaire contains 30 questions,  it takes approximately 20 minutes to complete and can be used by researchers and clinicians to gain a greater understanding of the quality of life of carers of people with dementia.

Lots more information about C-DEMQOL is available from the BSMS website

THE C-DEMQOL MEASURE

Both research and self-administered versions of C-DEMQOL – A measure of carer quality of life, are available to download from the links below. There is more information about the measures on the BSMS website

Contact

Email: dementiaresearchunit@spft.nhs.uk

DETERMIND: DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers

This research programme, which opened in July 2019, aims to find out what is it that enables one family to live well with dementia and another, with ostensibly the same illness and challenges, to have very poor experiences.

It’s an observational (non-invasive) study tracking approximately 930 people who  were recruited within six months of receiving a diagnosis of dementia, as well as approximately 700 carers. It is the largest cohort study currently running in the UK that is exploring the post-diagnostic care pathway.

As part of the study, participants were interviewed by a research worker for two hours when they joined the study, and then are interviewed again after 12, 24 and 36 months. Researchers ask about service use, costs and outcomes, including quality of life. In addition to the Sussex interviews, researchers are also following participants  in southeast London and Newcastle/ northeast England. 

Who is running the study?

Dr Ben Hicks (Research Fellow) and Professor Sube Banerjee (Programme Leader) Brighton and Sussex Medical School.

Our partners include: London School of Economics, Newcastle University, York University, Cambridge University, Kings College London and University of Sussex.

Why is the study being run?

This huge (£5m) funded study (NIHR and ERC) is looking to develop processes by mapping the care journey of a person with dementia three years post diagnosis – this will enable us to learn more about where the potential inequalities arise. 

What stage is the study at?

The study has now closed for recruitment of new participants. The study team are in the process of conducting the annual follow up visits for DETERMIND participants.

Contact details

Email: determind@bsms.ac.uk or B.hicks@bsms.ac.uk 

Email: dementiaresearchunit@spft.nhs.uk

Telephone: 01273 877843

Website: www.DETERMIND.org.uk

This study has now closed. We'll analyse the results before we publish them here.

Who is running the study?

The study is led by University College London (UCL) with Camden & Islington NHS Foundation Trust, the University of Oxford, the University of Sussex, Tees, Esk and Wear Valleys NHS Trust and University of Plymouth. It is funded by the National Institute of Health Research: Health Technology Assessment (NIHR HTA).


Why is the study being run?

We want to see if people who receive DREAMS START (Dementia Related Manual for Sleep: Strategies for Relatives) have better outcomes than people who receive usual care without DREAMS START. If DREAMS START helps people more than usual care alone, we hope to make it available to everyone after the study.


Why should you take part?

Many people living with dementia have disturbed sleep, including reduced night-time sleep, night-time wandering and daytime sleepiness. They often wake family members, who may become exhausted, stressed and unhappy. Night-time paid care may be unaffordable and care at home may break down


What will taking part involve?

One of our researchers will arrange an initial face to face meeting with you - this could either be in your home or at the university. They will complete questionnaires with you and your relative or friend and we will leave your relative a special watch to wear that measures their movement and how much light they get. 

We will then be in touch around a week after this meeting to let you know if you have been chosen at random to receive DREAMS START, or to receive usual care without DREAMS START. Whichever group you are in, your contribution is important to the research and you will continue to receive usual care and services.

If you are offered DREAMS START, we will meet with you 6 times over the course of the study to help you to understand any difficulties your relative is having sleeping, how to manage these difficulties and how to improve your own sleep. They will help you to develop strategies to help your relative be more active during the day and sleep better at night.

For all participants in the study, the researcher will visit you again 4 and 8 months after the initial visit to repeat the questionnaires and to ask your relative to wear the special watch for a week each time. 


Who can take part?

We would like to invite 370 family members or friends who support someone living with dementia at home to test whether a new intervention (DREAMS START) can reduce the sleep difficulties experienced by people living with dementia. 

How can I take part?

You can take part by being referred from your clinician or through Join Dementia Research.

Contact details

Caroline Connell
Email: Caroline.Connell@spft.nhs.uk

Diabetes medicine tested as a potential treatment for early-stage Alzheimer’s disease

What is the study about?  

Evoke is investigating whether an existing medicine can potentially work as a disease-modifying option for early-stage Alzheimer’s disease. Evoke is a 3-year study looking at the effect and safety of a daily tablet called Semaglutide which is used by people to help control type 2 diabetes. The Evoke study will examine the effects of Semaglutide on the change in cognition and function in people with early Alzheimer’s disease.

Who is running the study? 

The study sponsor is Novo Nordisk and it is being run by Professor Tabet and the team at the Dementia Research Unit.

Why is the study being run? 

The purpose of the evoke studies is to find out whether the medicine, Semaglutide, has a positive effect on early Alzheimer’s disease.

Why should you take part? 

By taking part in Evoke, you will be part of an international community of around 1840 people in approximately 40 countries around the world contributing to this piece of research. It is expected that about 30 participants will be from the United Kingdom. Participation in clinical studies is entirely voluntary.

What will taking part involve? 

The study included:

• Taking one tablet every day

• Memory tests and questionnaires on how well you manage daily routines

• Blood samples

• 1 brain MRI scan to look at brain structure *

• 1 PET brain scan to test for amyloid (a protein involved in Alzheimer’s disease)

** You will have the opportunity to discuss the results of these scans with your study doctor before taking any medication.

Taking part

We were looking for people to take part who were:• Aged 55-85• Have a diagnosis of mild cognitive impairment or mild dementia due to Alzheimer’s disease• Have a study partner who is willing to take part in the study with you

How can I take part?

This study is now closed to recruitment. We will post more information about findings and next steps here. 

Contact details

Tel. 01892 603107 (Please leave a message) Email: dementiaresearchunit@spft.nhs.uk

For more information, see here: www.novonordisk-trials.com 

What is the study about?  

We are looking for participants between 65 and 85 years old for a study that investigates how ageing affects how we understand and remember short stories. 

Who is running the study?

University of Sussex

What will taking part involve?

The study involves one meeting, lasting two and a half hours. We will ask you to listen to short stories describing real life situations and to remember them later. 

This study is now closed to recruitment. We will post more information here when available.

Contact details

Dr Flavia De Luca 

Email. fd223@sussex.ac.uk

What is the study about?

Memory problems and some degree of memory dysfunction are common in old age. Patients referred to memory clinics who do not meet the criteria for dementia diagnosis are mainly diagnosed with Mild cognitive impairment, subjective cognitive impairment and age-associated memory decline. Patients with these diagnoses are discharged and many are lost to follow up. The reaction, impact and outcome for these patients following diagnosis is not clearly established.

Who is running the study?

This is a joint study run with Sussex Partnership NHS Foundation Trust and the University of Sussex. The chief investigator for this project is Prof Naji Tabet, Director of the Centre for Dementia Studies at Brighton and Sussex Medical School.

Why is the study being run?

The aim of this study is to understand the attitudes, views and practices of patients with memory problems but no diagnosis of dementia immediately after memory clinic assessment and a year later. We would also like to understand how the assessment may impact the patients' lifestyle practices during the year following assessment.

What will taking part involve?

In this mixed methods study, we intend to recruit patients 50 years of age and over from sites across the UK. The study is comprised of a main study and a sub-study. The main study will involve completing a baseline questionnaire measuring patients’ attitudes to the diagnosis they received at the memory clinic and their future intentions and actions in relation to their health, social and lifestyle practices.in response to their diagnosis. Patients will also be invited to complete a follow-up questionnaire to identify any changes to health, social and lifestyle practices within the year after the memory clinic assessment. For the sub-study, patients will be invited to take part in a semi-structured interview after memory clinic assessment and then within the year to gain a more in-depth understanding of their subjective experience of living with their diagnosis.

Who can take part?

Patients aged 50 years or above diagnosed with either Mild Cognitive Impairment, Subjective Memory Impairment or Age Associated Memory Loss.

Contact

This study reached the local recruitment target for Sussex and is now closed. We would like to thank everybody for taking part and to our clinicians who have referred to this study.

If you have any questions, please contact us:

Dementia Research Unit, Grove House, Crowborough, TN6 1HB

Call: 01892 603107 (please leave a message)

Email: dementiaresearchunit@spft.nhs.uk

What is the study about?  

Depression is very common in people with Alzheimer’s disease and other dementias, causing them distress as well as reducing their quality of life and that of their carers. Unfortunately, antidepressant drugs do not have clear effectiveness in these patients and it appears that the most commonly available psychological therapies such as cognitive behavioural therapy or CBT are also not consistently useful. This study will investigate whether an adapted form of problem-solving therapy called Problem Adaptation Therapy (PATH), can be successfully applied in an NHS setting and with patients who are representative of those seen with dementia & depression in the NHS.

Who is running the study?

The study is run by University College London and funded by the National Institute of Health Research, with Sussex Partnership NHS Foundation Trust as a participating site, along with many other Trusts across the country.

Why is the study being run?

The principal aim is to adapt, manualise and refine an intervention based on problem adaptation therapy (PATH) that is suitable for use with people with mild and moderately severe dementia, and their carers, and can be delivered by existing staff in NHS secondary care dementia services (memory services and older people’s community mental health teams [CMHTs]) and Improving Access to Psychological Therapies services (IAPTs) in primary care services. We will assess clinical and cost effectiveness within a randomised controlled trial.

Why should you take part?

  1. The opportunity to receive a novel intervention - the adapted problem adaptation therapy (PATH), which has already been used with some success in the US for individuals in the very early stages of dementia. There are no other evidence-based treatments for depression in dementia.
  2. For all participants (intervention and TAU), a more in-depth screening assessment which they may not have otherwise received within the standard of NHS care.
  3. Being part of a trial, which may reap benefits that could potentially help other people in the future who suffer from depression and dementia.

What will taking part involve?

Participants will be randomised on a 1:1 basis between the PATH intervention and Treatment as Usual using a web-based secure randomisation service. The intervention will consist of 10 manualised, face to face sessions over 12 weeks, each lasting up to an hour, and comprising 2 assessment sessions, 7 sessions focused on problem solving using PATH tools, and 1 review session.

Who can take part?

(1) Diagnosis of probable Alzheimer’s Disease (AD) or mixed AD and vascular dementia.

(2) Mild to moderate dementia severity.

(3) Clinically significant depression

(4) Aged >50 years.

(5) Sufficiently fluent in English to engage with the PATH intervention.

(6) Identified family carer who spends >1 hour per day on at least 3 days per week with participant and agrees to act as co-therapist for intervention.

How can I take part?

Pathfinder is now closed to recruitment in Sussex Partnership.

Contact details

Dementia Research Unit

Email: dementiaresearchunit@spft.nhs.uk 

What is the study about?  


Nationally, a number of memory assessment services (MAS), that assess and diagnose people with dementia, were closed or limited their activity, during the COVID-19 pandemic, in order to reduce risks to people who would be attending their face-to-face assessment.  This left many people waiting for assessments and unable to access the support they
needed. To respond to this challenge, we proposed establishing of the ‘remote’ MAS, using video or telephone assessments to enable us to continue dementia diagnosis activity during face-to-face restrictions. Some services adopted a virtual MAS service to enable people to get assessed and receive the support they needed. However, there was little evidence to support these new pathways.


This research project explored patient satisfaction with the use of remote memory assessment services (MAS), factors associated with satisfaction and dissatisfaction with the service as well as how the remote MAS impacts clinical outcomes related to a dementia diagnosis of other health conditions.

Who is running the study?


This study is being run by researchers at Sussex Partnership NHS Foundation Trust and Brighton and Sussex Medical School. It was funded by the Applied Research Collaboration (ARC KSS) in collaboration with the Health Innovation Kent Surrey Sussex (Health Innovation KSS) 

What did we find?


Overall, the study found that people accessing or delivering the service were satisfied. To support these services, we developed a virtual memory assessment toolkit, with additional funding from the Sussex Higher Education Innovation Fund. Co-designed and co-produced by clinicians, researchers and people with lived experience of dementia, including carers, the virtual memory assessment toolkit is aimed at clinicians who assess and diagnose dementia.

Resources

 

Download a toolkit  which includes:

  1. Remote Memory Assessment Toolkit: a guide for clinicians
  2. Patient Information about remote memory assessment appointments
  3. Patient Video: Remote Memory Assessment

See a case study for Remote Memory Assessment: One Year On

Contact

dementiaresearchunit@spft.nhs.uk

Mental health research studies

Many people sometimes hear a voice or voices that other people do not hear. Some of these individuals might seek help from mental health services for voice-hearing or for other difficulties they might be facing. However, there has been little research on the views and experiences of clinical staff about voice-hearing.

The A2V Project sought to understand more about clinicians' thoughts, feelings and approaches to working with patients who hear voices. It involved collecting clinicians' views and attitudes towards voice-hearing and the assessment of this experience in patients.

The findings may be used to inform training on ways of working with this patient group in the future. Findings have thrown up a training need for clinicians to have confidence in working with patients who hear voices - If any organisations/services are interested in training to enhance the confidence of their clinicians, they can contact the Sussex Voices Clinic and request a training course.

This study ran in the Sussex Voices Clinic. See more about the Clinic here

This study has now closed. We'll analyse the results before we publish them here.

What is the study about?  

ADAPT is a novel treatment for reducing anxiety in hypermobility (trial phase).

The aim of this study is to test potential non-drug therapies for anxiety in people with hypermobility in a randomised controlled trial. This means you have a 50% (random chance) of receiving the new non-drug therapy (ADAPT) or an existing therapy for anxiety.

Who is running the study?

The research is funded by MQ, a mental health research charity. It's a partnership between Brighton and Sussex Medical School and Sussex Partnership NHS Foundation Trust.

Why is the study being run?

Our bodies influence the way we feel and react. A strong emotion such as anxiety is made more intense by the feeling of our heart racing. The way in which people differ physically can affect how much their body reacts and this can influence how likely they are to experience anxiety symptoms. Some of these differences run in families, such as having flexible, ‘hypermobile,’ joints.

It's well established that people who are hypermobile experience problems with anxiety or panic more than you would expect by chance.  

To date no specific treatments exist for treating anxiety in those with hypermobility. This is important because joint hypermobility is relatively common, affecting about 20% of the population.

Why should you take part?

This research is designed to help with symptoms of anxiety and it may be beneficial in treating anxiety that you experience. 

The results of this study will inform the evidence base for treatment of anxiety and hypermobility for all patients in the future.

This study continued to recruit during COVID-19 and was modified to be accessible online.

What will taking part involve?

Between 8 to 10 90-minute sessions of ADAPT therapy.

Who can take part?

People who experience anxiety and have flexible joints as determined by scoring 2 or more on self-report questionnaire.

Or

A confirmed hypermobility diagnosis such as hEDS, joint hypermobility syndrome or hypermobility spectrum disorder and experience anxiety.

Contact

If you have any questions about this study, please email: AskAboutResearch@spft.nhs.uk

The principal investigator of the study is Dr Jessica Eccles and is also happy to be contacted:

Email: j.eccles@bsms.ac.uk

Twitter: @bendybrain

This study has now closed.

What is the study about?

The aim of this study is to determine whether living with a long-term condition during a pandemic increases the likelihood of experiencing anxiety. We're interested in hearing from all people about their experiences during the Covid-19 outbreak.  

ADAPTATION is an extension of the Altering Dynamics of Autonomic Processing Therapy (ADAPT) study created in response to the impact that the Covid-19 outbreak may be having on those with and without physical health conditions.

Who is running the study?

The research is funded by MQ, a mental health research charity and Versus Arthritis.  It's a partnership between Brighton and Sussex Medical School and Sussex Partnership NHS Foundation Trust.

Why is the study being run?

To explore the impact of Covid-19 on people’s wellbeing, and to explore individual activity relating to Covid-19, and the resulting behaviour. More specifically, we want to offer new understanding into the relationship between mental and physical health within the context the Covid-19 pandemic.

By understanding how those with existing physical health conditions are impacted, we can target relevant and appropriate support strategies to best support individual’s retaining psychosocial functioning. This could also help optimise public resource.

Why should you take part?

With a better understanding of anxiety relating to Covid-19, and how behavioural reactions may influence this relationship in both those with and without physical health conditions, we may be better able to offer support to those most at risk of psychological deterioration during a pandemic and quarantine.

What will taking part involve?

You'll be asked to complete a questionnaire about anxiety, depression, quality of life, social media usage, isolation and worries about Covid-19.

We'll invite you to complete this questionnaire every week for 10 weeks, and follow-up questionnaires at 3 months, 6 months and 12 months from the date you started the study.

Who can take part?

We invited anyone aged 18+ to complete the online questionnaires. We recruited those with and without physical health conditions to investigate any differences in how they responded.

How can I take part?

This study has now closed.

A copy of the patient information sheet, with more details can be found here:

https://sussex.box.com/s/9ufm179os90tvd22jet1ljhz9ivcce44

Contact

The principal investigator of the study is Dr Jessica Eccles who is based at Brighton and Sussex Medical School.

Email: j.eccles@bsms.ac.uk

This study has now closed.

What is the study about?

The study is exploring the cause and prevalence of memory problems in people with (or without) mental health, neurodevelopmental and neurodegenerative disorders.

Who is running the study?

The study is sponsored by Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust. The study is led by researchers who work for Newcastle University, the NHS and the Clinical Research Network.

Why is the study being run?

The autonomic nervous system regulates the way that our heart, lungs and digestive system work. If these systems are not working in the usual way then the blood supply to the brain will be slightly different. This change may be enough to affect memory and concentration.

We would like to know if the autonomic nervous system works differently in people with mental health, neurodevelopmental and neurodegenerative disorders. We would like to invite to the study people with and without such disorders to evaluate whether the autonomic nervous system is affected by the severity of the disorder or by medication use.

Why should you take part?

The information we gather from this study may help us to develop further treatments for mental health, neurodevelopmental or neurodegenerative patients in the future.

What will taking part involve?

Taking part involves completing a few questionnaires which ask about symptoms that are caused by an upset autonomic nervous system, some questions about hypermobility, and about your experience of fatigue (tiredness). It will take you up to 15 minutes to complete the questionnaires.

We'd also like you to decide whether you want to complete the tests of memory and concentration. These tests are done with a member of the research team who will be using a computer. It'll take you up to 20 minutes to complete these tests and could be done either in NHS trust buildings or university. If you prefer to undertake the memory tests at home, we may be able to arrange that for your convenience. Remember this is optional.

Who can take part?

We're looking for anyone over 16 years, with or without mental health, neurodevelopmental or neurodegenerative disorder.

How can I take part?

This study has now closed.

Contact

Email: askaboutresearch@spft.nhs.uk  

Call: 0300 304 0088

This study is now closed

This study investigated the effectiveness of Positive Written Disclosure for older adult caregivers of people who experience psychosis.  Positive Written Disclosure is a brief, self-directed, writing therapy that encourages people to take 20 minutes out of their day for three consecutive days to write about a positive memory or experience. 

The study opened in 2017 and recruited caregivers of people with psychosis, aged 60 or over, whom were able to read and write in English.

The study is now closed. Thank you to all of the caregivers that have helped plan, design and develop and take part in this research study.

Who is running the study?
This study was led by Dr Cassie Hazell (University of Sussex) with Sussex Partnership NHS Foundation Trust.

Findings

We successfully met our progression criteria, recruiting to target and within timeframes whilst attaining 97% retention and 84% primary outcome data completed at 6 months. Carers randomised to the positive writing group described the intervention as enabling them to have a more positive attitude and focus on activities for themselves. Both writing groups described their tasks as providing distraction from caring responsibilities. However, some carers found the narrow positive emotion focus challenging.

Conclusions
Positive Written Disclosure is a feasible and acceptable intervention for older adult carers of people with psychosis within a community setting. 

Contact details: askaboutresearch@spft.nhs.uk

www.surrey.ac.uk/people/cassie-m-hazell

Publications

Caring for Carers (C4C): Results from a feasibility randomised controlled trial of positive written disclosure for older adult carers of people with psychosis

Jones, C.J., Hazell, C., Hayward, M., Pandey, A., Papamichail, A., Bremner, S., O’Connor, D.B., Pinfold, V., & Smith, H.E. (2022)

This study is now closed.

Thank you so much for taking part in our research survey, your input was really valued.

The University of Cambridge NHS/HSC Health Data Consent Survey (study registration number ISRCTN 37444142) was open from February to September 2020. It was anonymous, meaning that people taking part could not be identified.

More than 29,000 people from across the UK responded to our survey about sharing health data.

Take a look at the results and see the impact you can have by taking part in research.

Contact

Email: askaboutresearch@spft.nhs.uk

Call: 0300 300 0088

The COSI Study is looking at whether the Circle of Security- Parenting Programme (a group parenting programme) is an effective form of support which can be used by Perinatal Mental Health Services. Circle of Security-Parenting (COS-P) is a group parenting programme which aims to help parents understand their own, and their child's, emotions. This is done by providing social support and connections with other parents. We are carrying out this study to find out if this programme works and who it works best for. This will help us understand whether it should be used more widely across England.

How can I take part in this study?

•    If you have a child aged 0-12 months 

•    If you have received a certain score on two questionnaires used by your service •    

If you have not received COS-P before

Everyone in the study is randomly allocated to one of two groups. One group will receive COS-P in addition to their usual treatment. The other group will receive the usual treatment provided by their service.

Participants will be asked to complete a series of questionnaires when they join the study, and at three timepoints throughout the following year. This will help us assess whether COS-P has any effect and if there are any changes over time. 

Contact

We are happy to announce that participant recruitment for The COSI Study is now complete. A total of 371 parents were recruited to take part, and with 55 of these coming from Sussex Partnership, we are the top recruiting site for the study. We will post findings here when they become available.

If you'd like more information on the study, please get in touch: askaboutresearch@spft.nhs.uk.

This study is now closed. We'll share the results when they're available.

What is the study about?  

This study explores people's experiences of the COVID-19 pandemic.

Who is running the study?

The research is funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration funding awarded to the research team. The study is sponsored by the University of Sussex.

Why is the study being run?

 This pandemic impacted the day-to-day lives of people across the world. The aim of this study was to find out more about the mental and social wellbeing of people in rural and coastal communities and people accessing health, community or social support services. The findings will be used to help develop interventions and provide feedback to services to better support local people throughout and beyond the pandemic.  

Why should you take part?

The information collected will help us and other people understand more about how to best support individuals and communities throughout and beyond the Covid-19 pandemic. Some people in similar research studies have told us that they have found it interesting or helpful to answer questions about their mental health or social wellbeing.

What will taking part involve?

Participants completed a survey or an interview (or both).

Who can take part?

We invited people aged 16 – 35 years old who:

  • Were currently involved in education, community groups, mental health, wellbeing, social care or voluntary sector services
  • Feel they are struggling with their mental wellbeing and are not accessing a service
  • Have been involved with other research projects and given their permission to be contacted about further research studies.

Contact

Email: askaboutresearch@spft.nhs.uk

Call: 0300 300 0088

This study is now closed. The results will be made available here.

What is the study about?  

We're testing a new questionnaire designed to measure how well people manage their emotions. This questionnaire has been designed on the basis of a well-researched and accepted model of ‘emotion regulation’ but hasn’t yet been used with people who have a range of mental health difficulties. We want to collect answers to this questionnaire along with some other relevant information to find out how well it measures the ideas it is intended to measure.

Who is running the study?

The study is part of a PhD in the School of Psychology at the University of Sussex supported by Sussex Partnership NHS Foundation Trust. The PhD is jointly funded by the Economic and Social Research Council and the South East Network for Social Sciences.

Why is the study being run?

We want to collect answers to this questionnaire along with some other relevant information to find out how well it measures the ideas it is intended to measure.

Why should you take part?

This study is part of a bigger research project looking at new ways the NHS could help people who have difficulty managing their emotions. Taking part could potentially improve treatment offered to people in the future. Understanding the reliability and validity of the questionnaire will also help other researchers decide if it's useful and relevant to their research and may contribute to higher quality of research in the future.

What will taking part involve?

If you choose to take part you'll be directed to some questionnaires to complete online. These may take up to 20 minutes to complete. The questionnaires will ask you about different aspects of your mental wellbeing as well as more detailed questions about managing your emotions. Choose a time when you feel ready and able to reflect on your mental health and wellbeing.

Who can take part?

We're asking a wide range of people to complete a number of questionnaires online. We're gathering responses from people who have different mental health difficulties and people without any particular mental health difficulties. Comparing answers between these groups of people will help show how useful the questionnaire is.

Contact

Dr Alison Roberts, Lead Researcher

Email: alison.roberts@sussex.ac.uk / askaboutresearch@spft.nhs.uk

This study is now closed. You can find out more on the ENRICH study website.

What is the study about?  

The ENRICH trial was a five-year programme of research funded by the National Institute for Health Research (NIHR). It aimed to develop, pilot and trial a new peer worker intervention to enhance discharge from inpatient mental health services.

Who is running the study?

ENRICH is a major programme of research led by City, University of London and East London NHS Foundation Trust, and funded by the National Institute of Health Research. The ENRICH programme aims to develop and test the effective introduction of peer support into mental health services. Find out more on the ENRICH study website.

What did taking part involve?

We conducted a Randomised Controlled Trial (RCT) including 592 participants who were recruited from psychiatric inpatient wards across seven different study sites in England. Participants were recruited by our service user researchers who explained the study and collected data at baseline and then met people again four months after they were discharged from hospital.

Contact

Email: askaboutresearch@spft.nhs.uk

Call: 0300 300 0088

This study is now closed. We'll post the results here when they become available.

For more information about the EYE project, visit the trial registration page.

What is the study about?

Around 7,500 young people in England develop psychosis every year. It's a severe mental health problem that generally starts in people aged 14-35 years and has long-term effects on the individual and society. Early intervention in the first three years of psychosis can improve long-term outcomes. However, at least a quarter of all young people drop out of Early Intervention in Psychosis (EIP) services in the first 12 months, leading to greater risk of poor outcomes. Ensuring that young people receive a service quickly is a current NHS priority, but there are no interventions to improve engagement with services.

What is the EYE-2 project? 

This study is about improving services for people who have a first episode of psychosis so that more people want to stay with the service and benefit from its support.

The first Early Youth Engagement (EYE) project developed a new approach with young people, their parents and Early Intervention in Psychosis (EIP) staff. The EYE approach addresses the issues that can put people off services, like the way staff talk with them, how much family and friends are included, and how much it helps with their goals, treatment choices and preferences.

The EYE approach includes a website, booklet series co-written with young people, and other resources to support young people and families, and a training programme for staff in how to work flexibly, honestly and openly using key, well established 'motivational' techniques to help young people achieve their goals. 

It aims to include data from 950 young people with first episode psychosis. 

Who is running the study?

This study is being run by:

  • South London and Maudsley NHS Foundation Trust
  • Southern Health NHS Foundation Trust
  • Greater Manchester Mental Health NHS Foundation Trust
  • Oxford Health NHS Foundation Trust
  • Cambridgeshire and Peterborough NHS Foundation Trust
  • Norfolk and Suffolk NHS Foundation Trust
  • Berkshire HealthCare NHS Foundation Trust
  • Central and North West London NHS Foundation Trust

What will taking part involve?

EIP teams are randomly allocated to one of two groups: half of the teams deliver the EYE-2 approach and the other half work as usual. The measure of success is whether more young people stay engaged in the service for longer. The study also tests whether they have better mental health, work experience, social life, recovery, service satisfaction, and whether the approach saves money.

Contact details

For more information contact askaboutresearch@spft.nhs.uk

What is the study about?

This study explores the benefits of offering some choices to patients who hear distressing voices about the duration and content of Cognitive Behaviour Therapy (CBT).

Who is running the study?

University of Sussex and South East Network for Social Sciences.

What will taking part involve?

If you take part in this study we'll invite you to complete monthly assessments so we can see how impactful having choice over aspects of this treatment can be. You'll receive a course of CBT treatment over a maximum of 20 sessions.

Who can take part?

We're looking for patients who have been given a diagnosis of psychosis and are currently distressed by hearing voices.

Find out more about our Sussex Voices Clinic.

What is the study about?

Collection of finger sweat is explored in this study, as a rapid and convenient way of monitoring patient adherence to antipsychotic drugs. The aim of this research is to evaluate the use of finger sweat to detect and monitor antipsychotic drugs (and their metabolites) compared to conventional blood sample collection.

Who is running the study?

This research project is part of an educational project, which will be carried out by PhD student Katie Longman at the University of Surrey in collaboration with Surrey and Borders Partnership NHS Foundation Trust and Sussex Partnership NHS Foundation Trust. The research is supervised by Dr Melanie Bailey and Dr Catia Costa.

What is the aim of the study?

At the moment, if clinicians have concerns about whether treatment is working, they will order a blood or urine test. These tests are quite invasive and can be unpleasant for some patients. We're investigating whether finger sweat could be used as an alternative method to assess drug levels and monitor patient safety.

What will taking part involve?

Participants were given an information sheet to keep and were asked to sign a consent form to confirm your agreement to participate. We then collected a series of finger sweat and blood samples.

Who can take part?

To take part, you must:

  • be taking only one antipsychotic drug at the time (Clozapine, Olanzapine, Risperidone or Quetiapine), have stopped antipsychotic treatment or have never received any of these drugs
  • be aged between 18-85 years
  • have capacity to consent to participating in this study.

Findings

The study has found that the tests detected the presence of antipsychotic drugs accurately in every patient taking them but it was most effective for Clozapine. Hand-washing did not make a difference to the efficacy of the tests. Also, the levels of Clozapine metabolites in finger sweat correlated with the levels found in blood. This raises an exciting possibility that the test will eventually be able to quantify the levels of Clozapine in a patient's sweat instead of just detecting them.

Many thanks to all of our service users and SPFT colleagues, in particular, staff at Worthing Clozapine clinic, for being involved in this research.

See a published paper about the study
 
See a summary of the study

Contact

Email: askaboutresearch@spft.nhs.uk.

The National Institute for Health & Care Excellence (NICE) recommends Cognitive Behavioural Therapy (CBT) as one of the best treatments for psychosis. However, only a minority of people with psychosis have the chance to receive CBT as delivery takes time and it needs to be delivered by highly trained therapists, such as clinical psychologists. We want to find out if a shorter version of CBT that is delivered by therapists with less training (such as Assistant Psychologists) is helpful for people who hear distressing voices.

We were awarded £250k by the National Institute of Health Research (NIHR) to evaluate this form of CBT by comparing it to two control groups – one group who received supportive counselling and another group who received no additional interventions.

If it proves to be cost-effective, this shorter version of CBT could be made available to more people.

See the published results from GiVE2 here

GivE3 is the follow-on study, please see more details here

For more information: email mark.hayward@spft.nhs.uk

What is the study about?

The HOPEFUL study is seeking the views of professionals currently working with young women who are not in education, employment or training (NEET) in Sussex and Kent. These views will help to develop a low-cost hope-focused intervention for NEET young women.

Who is running the study?

The research is being run by a team of researchers from the University of Sussex and has been funded from a grant from the National Institute for Health and Care Research Public Health Research program. The study is sponsored by the University of Sussex.

Why is the study being run?

NEET young women often have poor mental health and fewer life chances than young people who are working or studying. Recent research shows that increasing hope may be a key feature of effective support for NEET young people with emerging mental health needs. We are seeking the views of professionals currently working with NEET young people in Sussex and Kent to help us develop a low-cost hope-focused intervention for NEET young women.

Why should you take part?

By taking part in this study, you'll help us to develop a low-cost, scalable intervention to improve outcomes for NEET young women. Participants will also be compensated for their time.

What will taking part involve?

Part one

We'll invite you to a one-hour interview with the research team asking you to talk about the needs of NEET young women in your local area; current support services; and your thoughts on how best to increase hopefulness for NEET young women.

Part two (optional)

A two-hour co-design workshop with other professionals involved in the study. You'll be asked to discuss how the intervention could work in practice, so that it could be accessed by many NEET young women without needing lots of resources.

Who can take part?

Professionals who have experience of working in a professional role supporting NEET young people aged 16-24 years in deprived coastal communities in South East England.

Contact

To find out more email:

Lauren Mose: lauren.mose@spft.nhs.uk

Evelin Vogel:  Evelin.vogel@spft.nhs.uk

Are self-help books for depression helpful?

LIGHTMind2, a study led by Professor Clara Strauss at Sussex Partnership NHS Foundation Trust, looked at adding supported self-help Mindfulness-based Cognitive Therapy (MBCT-SH) to help people with mild to moderate depression - adding in mindfulness to look at situations in a non-judgemental way and choosing how to respond. 

People taking part were given one of two self-help books, at random, for free and six support sessions with a trained practitioner to help you make the best use of the book. One book is based on mindfulness-based cognitive therapy and the other book is based on cognitive behaviour therapy.
Participants were aged at least 18 years old, be experiencing mild or moderate symptoms of depression and living in Sussex.

What did we find?

 

In the LIGHTMind 2 study, we wanted to see if another type of clinician-supported self-help called mindfulness-based cognitive therapy self-help (MBCT-SH) would be more helpful and save the NHS money in comparison to clinician-supported CBT-SH.

  • We found that people receiving clinician-supported MBCT-SH were significantly less depressed 16 weeks after the intervention started compared to people receiving clinician-supported CBT-SH. 
  • Not only was MBCT-SH more helpful, but it also saved the NHS over £500 per person compared with CBT-SH over the course of the study.

As a next step we hope to work with NHS Talking Therapy services to find the most effective and efficient ways of rolling out support MBCT self-help. We call for IAPT services (now NHS Talking Therapies) to offer this intervention as a CHOICE alongside CBTSH.
 
To be able to roll out we need to train and supervise clinicians to deliver - this is where we apply for funding to research the rollout of this, so we can replicate these findings at scale.

Publications

Clinical Effectiveness and Cost Effectiveness of Supported Mindfulness-Based Cognitive Therapy Self-Help Compared With Supported Cognitive Behavioural Therapy Self-Help for Adults Experiencing Depression


The MBCT-SH book we evaluated in LIGHTMind 2 was The Mindful Way Workbook by John Teasdale, Mark Williams and Zindel Segal, but please note that the study included 6 support sessions with a trained practitioner to support use of the workbook


We are in the process of writing up findings on other aspects of LIGHTMind 2 and information about and links to articles will be listed below as they are published. 


With thanks to


We would like to thank the 410 people who generously gave their time to be involved in this study, without whom the study would not have been possible. 

We are also very grateful to the Lived Experience Advisory Group who contributed to the design and running of LIGHTMind 2. 

This study would not have been possible without support from Brighton & Sussex Clinical Trials Unit, NIHR’s Clinical Research Network, the Trial Steering Committee and the Data Monitoring and Ethics Committee.

We would like to extend our deep gratitude to the Psychological Wellbeing Practitioners and Research Assistants who were involved in the day-to-day running of the study. We would also like to thank the NHS Talking Therapies services (formally IAPT) services for taking part in this study: Brighton and Hove Wellbeing Service, East Riding Emotional Wellbeing Service, Health in Mind in East Sussex, Health in Mind in North-East Essex, italk in Hampshire, Lewisham IAPT service, South West Yorkshire Partnership NHS Foundation Trust, Talking Change in Portsmouth, Talking Therapies Southwark and Time to Talk in West Sussex.


Study Team


Clara Strauss (Chief Investigator), Sussex Partnership NHS Foundation Trust & University of Sussex
Kate Cavanagh, University of Sussex
Anna-Marie Bibby-Jones, Sussex Partnership NHS Foundation Trust & University of Brighton
Fergal Jones, Canterbury Christ Church University
Sarah Byford, King’s College London
Margaret Heslin, King’s College London
Glenys Parry, University of Sheffied
Michael Barkham, University of Sheffield
Laura Lea, Sussex Partnership NHS Foundation Trust
Rebecca Crane, Bangor University
Richard de Visser, University of Sussex
Amy Arbon, Brighton & Sussex Clinical Trials Unit
Claire Rosten, University of Brighton


Funding


This study was funded by the National Institute for Health Research (NIHR) [Research for Patient Benefit PB-PG-0815-20056]. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. The funder did not contribute to the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
 

Contact

For more information about this study contact:

E: askaboutresearch@spft.nhs.uk

This study is closed. We'll share the results and plans for the future here when available.

What is the study about?

This study aims to investigate which add-on therapy (lithium versus quetiapine) is more effective at reducing symptoms of depression over a 12-month period, which is more tolerable and best improves quality of life for patients.

Half of the participants will be allocated to the decision to prescribe lithium and the other half, quetiapine so we can compare the effects of each therapy.

Who is running the study?

Kings College London.

Why is the study being run?

Many people who receive antidepressants for depression fail to respond adequately to this treatment. One recommended treatment option for people who have failed to respond fully to antidepressants includes adding an additional medication to the antidepressant. These add-on medications include lithium and quetiapine, which is a low dose atypical antipsychotic.

There have been very few studies comparing these treatment approaches head to head. One short-term study (six weeks) found quetiapine was just as effective as lithium. However, there has been no long term follow up study to determine which of these medications is more effective at treating depression and which is more cost effective over a longer time period.

What will taking part involve?

This study is now closed.

Who can take part?

We invited people who met the following criteria to participate in this study:

  • Under the care of a GP and/or adult mental health services
  • Current episode of depression meeting DSM-5 criteria for major depressive disorder (MDD)
  • Any gender and aged 18 years or over
  • Meet criteria for treatment resistant depression
  • Current antidepressant treatment has remained unchanged and at, or above, a therapeutic dose for ≥6 weeks

Contact

Email: askaboutresearch@spft.nhs.uk

Sussex Partnership was a site for this study. The study closed to recruitment in June 2021

What is the study about?

We want to understand if having access to real-life stories like this is helpful for people. NEON aims to understand whether reading, watching or listening to the stories of people who have recovered from mental health problems can help people who have experienced mental health problems or people who have cared for those who do.

NEON has collected many different mental health recovery stories from around the world.

Who is running the study?

University of Nottingham. (Professor Mike Slade)

Why is the study being run?

To understand more about the effect recovery stories can have on peoples' mental health.

 

Primary objective: to evaluate the effectiveness of the NEON Intervention in improving quality of life at 1-year follow-up.

1) to evaluate effectiveness in improving hope, empowerment, meaning in life, and reducing symptoms

2) to evaluate the cost-effectiveness of the intervention compared with treatment as usual

Findings

The findings are on the NEON website:

Find out more about the study and the results.

Contact

If you'd like further information please contact:

Email: researchintorecovery@nottingham.ac.uk / askaboutresearch@spft.nhs.uk

Background

The range of outcomes and measures that have been used in trials of Cognitive Behavioural Therapy (CBT) for distressing voices suggests that there is a lack of consensus among professionals about what should be measured. Additionally, these outcomes have mostly been determined by professionals in the field, with little to no focus on lived experience perspectives. Consequently, the outcomes may not be representative of the changes or benefits sought by the voice hearers themselves. For that reason, the MOTIVE study seeks to explore views and perspectives of service users and practitioners about what the outcomes of CBT for distressing voices should be. This involves conducting individual interviews with service users and focus groups with practitioners.

Who can participate?

Service users can take part if they are 18 years of age or older, have attended at least 50% of a course of CBT and are able to talk about their experience. Practitioners can take part if they have experience of delivering of CBT for distressing voices. 

This study finished recruiting in January 2022. The findings will be used to improve clarity around the outcomes of CBT for distressing voices in both research and routine clinical practice.

Findings

Exploring service users’ and practitioners’ priorities regarding outcomes of cognitive behavioural therapy for distressing voices: a thematic analysis Loizou. S, Fowler. D, and Hayward. M (2023)

Contact

Email: Voices.Clinic@spft.nhs.uk or askaboutresearch@spft.nhs.uk

The Open Door Project Survey: Healthcare professional’s prioritisation of barriers to accessing psychological support for perinatal obsessive-compulsive disorder and generation of recommendations to improve access to support.

What is the study about?  

The Open Door Project aims to develop recommendations on how to increase access to services for people experiencing perinatal obsessive-compulsive disorder.

Who is running the study?

The research is being run by a team of researchers from Brighton and Sussex Medical School.

Why is the study being run?

Research suggests that perinatal obsessive-compulsive disorder is often under-recognised and subsequently under-treated. 

We have investigated service users’ experiences of accessing support. We're now seeking the views of healthcare professionals who work with perinatal populations, and to co-design recommendations in order to increase access to services for perinatal obsessive-compulsive disorder.

This project will help us to: 

  • Understand which are the most prominent barriers experienced by services users when accessing support for perinatal obsessive-compulsive disorder, from the healthcare professional perspective
  • Explore potential solutions to the barriers service users experience when accessing support for perinatal obsessive-compulsive disorder from the healthcare professional perspective
  • Decide the practical details of how these solutions could be offered, e.g. format and delivery. 

Why should you take part?

By taking part in this study, you'll help us to develop guidelines on how to increase access to services for individuals experiencing perinatal obsessive-compulsive disorder. Ultimately, we hope that the intervention will impact positively on the long-term mental health of those experiencing perinatal obsessive-compulsive disorder.

What will taking part involve?

  • You'll be asked to complete a short survey which asks about your interactions and confidence treating those with perinatal obsessive-compulsive disorder, and opinions of barriers to accessing support
  • At the end of the survey, you will be asked if you would also like to be considered for taking part in a workshop on this topic.

Who can take part?

Healthcare professionals who work in a service which supports perinatal populations (or who have done so in the previous 10 years) 

Contact

This study has now closed to recruitment. We will post findings on this page.

Email askaboutresearch@spft.nhs.uk or a.tunks2@bsms.ac.uk for more information.

What is the study about? 

Many people say outdoor swimming improves their mental health and wellbeing. There's been some research showing outdoor swimming helps people with depression, but not enough to say for certain. We'd like to see if getting in the water will help you feel better too. This is why we have created this course as part of a research study.

Who is running the study?

Prof Clara Strauss (Sussex Partnership NHS Foundation Trust) with Helen Massey (University of Portsmouth) and Hannah Denton (Sussex Partnership NHS Foundation Trust)

What will taking part involve?

There will be eight coached one-hour sessions at an outdoor location. The focus will be on building confidence in the water, and learning how to stay safe, whilst having fun and meeting like-minded people.

Swim locations:

  • London, Parliament Hill Lido
  • Worcestershire, Lenches Lake
  • North Devon, Saunton

Who can take part?

This course is aimed at people living with mild to moderate symptoms of depression who would like to try outdoor swimming but aren't sure where to start.

OUTSIDE 1 has now closed, having recruited 87 people to take part. We will post results here as they become available. OUTSIDE 2, a full-scale randomised controlled trial, is opening early in 2024. 

For more information about the study, go to: Outside research study webpage.

See a film about the study here

Contact

Email: spnt.outside@nhs.net

What is the study about?  

The study is examining changes in brain oxygen metabolism in people with a diagnosis of Bipolar Affective Disorder type 1. 

Who is running the study?

The study is being run by Dr Alessandro Colasanti from Brighton and Sussex Medical School at the University of Sussex. 

Why is the study being run?

The purpose of this study is to determine whether there's an impairment in oxygen metabolism in the brain of people affected by Bipolar Affective Disorder. The human brain is a highly energetic organ and oxygen is vital for our brain to function properly. A healthy brain should be able to increase oxygen use under high energetic demands. It's hypothesized that in some people with Bipolar Affective Disorder, the cells of the brain are unable to increase the oxygen consumption when needed. This might ultimately lead to abnormalities in brain function and stress to the brain

Why should you take part?

The study will not be of direct benefit to you, but we hope that the information we obtain will enable us to better understand the causes of Bipolar Affective Disorder, and contribute to the development of treatments that target the production of energy in the brain.

What will taking part involve?

This study involved the administration of a medication called Methylene Blue and scanning with Magnetic Resonance Imaging. The study was divided into two parts; (A) a screening visit and (B) two MRI study visits. 

  • (A) The screening is to assess whether people meet all the criteria and lasts approximately 2-3 hours. It consists of a medical examination and questionnaires. The questionnaires include a psychiatric interview and symptoms checklist.
  • (B) Eligible participants were asked to undergo two MRI visits at the University of Sussex. At each visit, an infusion (Methylene Blue or glucose) was administered through the venous cannula using a syringe pump. An MRI scan was then taken. 

Who could take part?

Participants were aged between 18- 60 years old with a documented Bipolar Disorder diagnosis, with first symptoms more than 5 years ago

How can I take part?

This study is now closed to recruitment.

Contact details

Email: a.colasanti@bsms.ac.uk 

Dr Alessandro Colasanti profile

What is the study about?  

Patient preferences for psychological therapies are helpful in informing treatment commissioning and provision, especially in the context of complex and variable experiences like voice-hearing. There is, however, very limited evidence as to the psychological therapy preferences of transdiagnostic voice-hearers. Before the study, we knew that lots of different psychological (talking) therapies exist for people who hear voices. However, there wasn't really any evidence about what patients themselves particularly wanted.

Therefore, the PREFER study aimed to explore patient preferences for psychological therapies for the experience of hearing distressing voices. We asked patients, who hear voices to tell us about their therapy preferences, such as when and where should therapy take place, and also, what should therapy involve and what it should aim to improve.

Over 330 people part between 2020 and 2022. Participants completed a series of questionnaires, involving a psychological therapy preference survey. Participants ranked their preferences across categories of practical, technical and relational therapy elements. We are grateful to everyone who took part or supported the study.

Who is running the study?

This study is led by Dr Clio Berry, Brighton and Sussex Medical School, with Dr Mark Hayward, Sussex Partnership NHS Foundation Trust, and Professor David Fowler, University of Sussex. The study is sponsored by the University of Sussex and is funded by an Economic and Social Research Council (ESRC) Impact Acceleration Award.

Why is the study being run?

The findings will be used to inform researchers and clinicians to help them develop and offer the types of therapies that patients really want.

Study findings

Overall, participants expressed a preference for individual, face-to-face intervention of at least nine sessions, with a highly experienced therapist (ideally with personal experience of voice hearing), collaborative, evidence-based and a core focus on enhancing coping strategies for voice-hearing experiences.

The findings will be used locally in Sussex to inform the practice of the Sussex Voices Clinic.

The results are published in a paper here.

Here is an easy read findings summary.

Contact

Email: Voices.Clinic@spft.nhs.uk or askaboutresearch@spft.nhs.uk.

PEL colour.png

What is the study about?  


An Exploration of the Experience of Peer Workers in Sussex Partnership Foundation Trust (SPFT), with Particular Focus on Emotional Labour, with the aim of developing a Good Practice Guide for Peer Working - Peer Emotional Labour (PEL)

The Peer Emotional Labour (PEL) study seeks to explore the experiences of the different groups of peer workers in Sussex Partnership Foundation Trust (SPFT), with particular focus on emotional labour - the impact of managing the emotions resulting from work interactions. PEL provides evidence that peer workers may experience a greater emotional impact from their job due to ‘the emotional work of using and embodying lived experience, and aspects of the working environment’.

What did the study involve?

PEL was a two-stage study using thematic analysis.

  • Stage 1 involved mixed focus groups of Peer Workers, Peer Trainers, Experts by experience (EBE) and Patient and Public advisors (PPI), Peer Leads & non-Peer managers/supervisors of peers.
  • Stage 2 involved a workshop for peers and Sussex Partnership leadership, drawing on key themes from focus groups, to determine priorities and recommendations.

Who is running the study?

This study was funded by the  National Institute of Health Research Applied Research Collaboration Kent, Surrey, Sussex (NIHR ARC KSS) and is led by Dr Sam Robertson, Chief PEL Investigator and Dr Helen Leigh-Phippard, Co-researcher.

Recommendations


•    Mandatory training on peer work/roles should be introduced for all staff. It should: incorporate trauma-informed & recovery-oriented approaches; be co-produced/delivered by peers; be both at induction AND ongoing; and allow for progression for peers.

•    Clinical supervision & reflective practice groups should be introduced for peers. 
•    Greater organisational buy-in on peer roles: to share information; increase awareness of peer support; and strengthen remit to ensure people with lived experience are embedded in organization (at all levels).
•    Establishment of an independent equivalent of the speak-up guardian for peer work.

Next Steps


•    Draft Guide to Good Practice for Peer Working to be co-produced with Sussex Partnership NHS Foundation Trust

•    National Institute for Health and Care Research (Research for Patient Benefit (NIHR RfPB) funding application for PEL2 - 
•    Explore emotional labour in a range of peer support worker contexts 
•    Autoethnography/reflective journals 

Read more about the NIHR ARCKSS Individual Development Award which supported Sam Robertson's peer emotional labour research.

Contact details:

E: sam.robertson@spft.nhs.uk

This study is closed. We will put results and plans for the future here when they are available.


What is the study about?  
THE PROMISE STUDY: PRedictors Of MIndfulness-based Self-help Engagement

We are looking to further understand whether there are any predictors related to how NHS staff engage with mindfulness-based interventions (MBI), such as Headspace. 

The predictors we are looking at are taken from psychological theories of habit formation and behaviour change; the Theory of Planned Behaviour and the Transtheoretical Model (aka The Stages of Change). 

The project started in February 2020 and recruitment finished in December 2021

Who is running the study?
The University of Sussex, Sussex Partnership NHS Foundation Trust and Headspace are conducting this one-year project. This study is part of a PhD studentship collaboratively funded by Headspace and the School of Psychology, University of Sussex. 

Our main host site is Sussex Partnership Foundation Trust

The study team:
•    Charlotte Dunkeld: Principal Investigator and PhD student at the University of Sussex
•    Prof. Kate Cavanagh: Co-Investigator and Supervisor
•    Dr. Clara Strauss: Co-Investigator and Supervisor
•    Dr. Eleanor Miles: Research Team Member at University of Sussex
•    Dr. Emily Durden: Research Team Member at Headspace


Why is the study being run?
Engagement with mindfulness-based interventions is notoriously poor, with a large number of people dropping out. However, there are many desirable outcomes derived from a regular mindfulness practice. We are therefore interested in factors that may impact on an individuals’ level of engagement.

Mindfulness can be considered a health behaviour. In other words, an “overt behavioural pattern, action or habit that relates to health maintenance, health restoration and to health improvement”. There are many established health behaviour theories, with the Theory of Planned Behaviour and the Transtheoretical Model being among them. These models have successfully predicted engagement in many physical health behaviours, such as dieting and exercising. We are interested to see whether these approaches can also be used to predict engagement with mindfulness mediation practice.

This study will help to provide a framework for sustained mindfulness practice and inform future empirical studies, ultimately allowing healthcare workers to utilise digital MBI’s to their full potential and derive ongoing benefit.

The results from this study may eventually inform the development and design of future digital mindfulness-based interventions in order to promote sustained mindfulness practice and improve outcomes for users.


Benefits of taking part
•    All participants received a free one-year subscription to Headspace.

•    Chances of improving mental health and wellbeing, and learning a new habit

•    Opportunity to be a part of research and contributing to the field of mindfulness and digital mental health


What did taking part involve?
Participants needed access to an ios or Android-supported device (such as a smartphone or tablet) or a computer with internet access to have free use of the Headspace app for a year.


Who can take part?
You must be 18 years or older to participate, along with being currently employed by an NHS trust or GP practice in England


Contact details: 
Email: promisestudy@sussex.ac.uk
Or: askaboutresearch@spft.nhs.uk
 

What is this study about?

In this study we want to investigate the factors that make psychological treatments work in the IAPT services.

This research is important because:

  • 1 in 5 people are affected by depression and/or anxiety
  • Psychological treatments are helpful in treating these problems and half of treated adults do recover.
  • Knowing what can help to make treatment work can help therapists adapt or develop new treatments.

Who can take part?

Anyone aged 18+ years who has been offered treatment in the IAPT service.

What is involved in taking part?

Completing a questionnaire whilst waiting for the start of psychological treatment.

Contact

Email: joanna.pooley@nhs.net

What is the study about?  

  • SlowMo is an evidence-based digitally supported therapy for paranoia, which combines face-to-face brief therapy with interactive technology. SlowMo starts by supporting people to notice their fast thoughts, visualised as grey, fast-spinning bubbles. People learn to slow down for a moment using personalised safer thoughts. Using a mobile app, people learn to slow down for a moment using personalised safer thoughts which helps people feel safer in daily life

 

  • The SlowMo trial is a large multicentre trial of psychological therapy for fear of harm from others. It recruited its target of 362 participants with over 90% completing the three and six- month follow-ups.

 

  • We used human-centred design to create SlowMo, and found excellent engagement in face-to-face sessions and with the mobile app, suggesting it was trustworthy, memorable and easy-to-use.

 

  • Patient, carer and public (PPI) involvement was strong at every stage with user-led qualitative research findings showing consistent themes of positive experiences of the therapy sessions and the technology.

 

  • A participant in the trial said: ‘The focus on fast and slow thinking really helped. The eye catching, helpful bubbles taught me that I can end the cycle of worry, and I do not need to think speedily and start panicking. I have got that now for life. Now all my worries are lessened by SlowMo and I have freedom and peace that I did not have before.’

Philippa Garety, Amy Hardy and Tom Ward, KCL, for the SlowMo team. 09/03/21

 

Who is running the study?

The trial is funded by the Medical Research Council and National Institute for Health Research (NIHR) partnership.

 

Why is the study being run?

It is common to worry about harm from others (also known as paranoia); however for some people these worries start to take over and have a major impact on their life. 

Thinking fast or going on gut feelings is part of human nature; however (research has shown that) fast thinking can also fuel these worries.

Therapy was focussed on helping people to become aware of and change fast thinking habits which our previous research has shown to contribute to paranoia. 

This eight-week therapy is assisted by an app downloaded onto a mobile phone. Therapists work with the person to identify their worries, and then help them find ways to slow down and take a moment when they notice their worries. If people can use the app to slow down and take another look at the situation, they can often realise that things aren’t as bad as they first feared or find other ways to manage their worries.

 

Why should you take part?

Angie was a participant in the study and shared her experience for the BBC One Show.

 

Findings

The results indicated that the treatment was effective, in part, by helping people to slow down their thinking and worry less.

  • Results showed that SlowMo was beneficial for paranoia and persecutory delusions outcomes, as well as improvements in wellbeing at six months, when compared to routine treatment alone. The treatment worked equally well regardless of demographic and clinical characteristics of participants, suggesting it is suitable for a wide range of people with paranoia.

 

  • Therapy was focussed on helping people to become aware of and change important  thinking habits (fast and slow thinking) which our previous research has shown to contribute to paranoia.  The results indicated that the treatment was effective, in part, by helping people to slow down their thinking and worry less.

 

  • SlowMo is a brief therapy and the treatment effects are equal to or better than existing psychological interventions for paranoia.

 

  • SlowMo’s clinically worthwhile results, extremely high satisfaction from people receiving the therapy, strong therapy fidelity and innovative technology means it is suitable for rolling out in the NHS. It will be used in our new Sussex Psychosis (Paranoia) Experiences and Recovery (SuPER) Clinic, to optimise and implement SlowMo so more people can benefit from this new therapy in the NHS.

 

 

Publications:

The service user experience of SlowMo therapy: A co-produced thematic analysis of service users' subjective experience
Greenwood. K et al. (2020)

Effects of SlowMo, a Blended Digital Therapy Targeting Reasoning, on Paranoia Among People With Psychosis: A Randomized Clinical Trial.

Garety, P., Ward, T., Emsley, R., Greenwood, K. et al. (2021).

Digitally supported CBT to reduce paranoia and improve reasoning for people with schizophrenia-spectrum psychosis: the SlowMo RCT
Garety, P., Ward, T., Emsley, R., Greenwood, K. et al. (2021).

 

        Contact details:

See more on the SlowMo website

E: askaboutresearch@spft.nhs.uk

SPEAKS is an NIHR-funded, mixed-methods feasibility study evaluating a psychotherapeutic intervention targeting difficulties in emotional experience and regulation for adults with Anorexia Nervosa.  SPEAKS therapy lasting 9-12 months was provided to 34 people with AN or atypical AN by eight specialist eating disorder therapists trained in the model across two NHS Trusts in the UK (Kent and Sussex).

Please click here for a short film about Emotion Focussed Schema Therapy for the SPEAKS study written and directed by Dr Anna Oldershaw and Dr Helen Startup and narrated by Dave Chawner.

SPEAKS study: study protocol of a multisite feasibility trial of the Specialist Psychotherapy with Emotion for Anorexia in Kent and Sussex (SPEAKS) intervention for outpatients with anorexia nervosa or otherwise specified feeding and eating disorders, anorexia nervosa type

Acceptability of Specialist Psychotherapy with Emotion for Anorexia in Kent and Sussex (SPEAKS): A novel intervention for anorexia nervosa - PubMed (nih.gov)

To listen to the Full of Beans Podcast where Dr Anna Oldershaw talks about SPEAKS, click here

What is this study about?

Stressful or traumatic events are common and can have a lasting impact. Trauma talking therapy is recommended for people who are experiencing difficulties due to such events. Small studies have shown that it is safe and can be helpful for people with problems like voices, visions, and sensations, or worries about being unsafe or persecuted.

The STAR trial is a large study to find out if this trauma therapy is helpful for a range of problems. We do not yet know if adding this therapy to usual care is helpful. We will compare people who get their usual care with people who have the therapy on top of their usual care and follow them up over time.

Who is running the study?

The STAR trial is funded by the NHS National Institute for Health Research and has been developed by leading clinicians, researchers and people with personal experience of mental health difficulties and trauma. It is running in London, Manchester, Newcastle, Oxford and Sussex. The lead site is the Institute of Psychiatry, Psychology & Neuroscience (IOPPN), King's College London.

 

Why is the study being run?

The National Institute for Health and Care Excellence (NICE) has recommended that a large study should evaluate this trauma therapy in the NHS, to fill a major gap in treatment availability. If the therapy is found to be helpful, we will aim to make it more widely available on the NHS. 

 

What will taking part involve?

The therapy is a type of Cognitive Behavioural Therapy (CBT) focusing on managing common effects of trauma. It aims to help people to make sense of past events and how it affects them now. It aims to find new ways of dealing with difficult memories, experiences and feelings. This includes experiences like voices, visions, sensations and worries about harm or persecution.

Therapy involves weekly sessions with a trained therapist for 9 months. “When I first came to the sessions, I was real nervous…but over time I got more comfortable and didn’t really want it to end” - participant

 

Who can take part?

This study is for anyone who is over 18 and:

  • Has been through stressful or traumatic events or experiences. 
  • Is experiencing common effects of a trauma like upsetting memories, nightmares, constantly feeling on edge, and difficult thoughts and feelings. 
  • Has problems like hearing, seeing or feeling things that other people can’t, or having worries about being unsafe or persecuted.

 

Contact details

The study is now closed to recruitment in Sussex. Thank you to everyone involved in helping to recruit to STAR and to those taking part, testing this trauma-focussed therapy.

Email: STARtrial@SPFT.nhs.uk

Visit: www.STARtherapytrial.co.uk

Twitter: @STARtrial

Patients who have gained weight as a result of medication to treat their mental health condition are benefitting from STEPWISE, a national research study, led by the University of Sheffield. Participants who suffer with psychosis were given dedicated support to look at their eating habits, try out different types of exercise and make healthier food choices as part of the STEPWISE study.

People with psychosis are up to three times more likely to be overweight or obese than the general public due to the effects of their prescribed antipsychotic medication.

Their weight gain can have a range of negative consequences, such as diabetes and heart disease. The effects can also lead to people with the condition making the decision to stop taking their medication.

The STEPWISE intervention was developed by adapting the NICE-approved education programme 'DESMOND' (for people with diabetes) to meet the needs of people with schizophrenia, Schizoaffective disorder or First Episode Psychosis.

47 participants took part in Sussex (Recruitment nationally was 414 people)

We held four intervention groups across Sussex and ran six booster sessions in collaboration with Early Intervention in Psychosis (EiP) services, Assessment and Treatment Services (ATS) and Recovery Service staff.

For more information about STEPWISE, see here

Contact:

E: askaboutresearch@spft.nhs.uk

What is the study about?

The TOGETHER study involves testing an intervention developed in Australia called ‘Groups 4 Health’ or ‘G4H’. G4H is designed to help people with their social connectedness and mental health. So far, this intervention hasn't been investigated in the United Kingdom with young people. The TOGETHER study is testing the feasibility of using this intervention with young people with mental health problems in Sussex.

As part of the TOGETHER study, we also want to understand what a wide and diverse range of professionals who support young people think about the idea of social connectedness interventions for young people with mental health problems.

Who is running the study?

The research is being run by a team of researchers from the University of Sussex, Sussex Partnership NHS Foundation Trust, Brighton and Sussex Medical School and the Applied Research Collaboration in Kent, Surrey and Sussex.

Why should you take part?

To help us learn whether future research should continue to explore the benefits of social connectedness in young people's mental health.

What will taking part involve?

Participants were asked to complete a short online survey asking practitioners questions about themselves, their professional experience and their attitudes and beliefs about working with young people with mental health problems to support their social relationships and connections. 

Who can take part?

This study is suitable for practitioners who currently work with service users aged 16-25 years.

How can I take part?

This survey has now closed. More information will be posted here.

Contact

Email: askaboutresearch@spft.nhs.uk

What is the study about? 

We're investigating an intervention designed to support people to identify and develop connections with more social groups. This intervention is called ‘Groups 4 Health’ and was created by a team in Australia. Past research has found that the intervention has helped people with their feelings of loneliness, their connections with other people, their symptoms of depression and their wellbeing. However, this intervention needs to be investigated with young people in the UK.

Who is running the study?

The research is run by researchers from the University of Sussex, Sussex Partnership NHS Foundation Trust, Brighton and Sussex Medical School, and the Applied Research Collaboration in Kent, Surrey and Sussex. 

Why is the study being run?

To learn if the intervention is helpful for young people in the UK, it first needs to go through a small feasibility research study. 

This project will help us to learn:

  • What the experience of the intervention is like, and how we can make the intervention better 
  • Do our plans for this research study work? For example, do we get enough people who want to take part? Do people stay involved for the whole study?

Why should you take part?

Participants have the chance to receive an intervention (Groups 4 Health) that is not currently offered as standard in youth or mental health services. Please note, we do not know whether this intervention is any more effective than what is offered already. 

Participants will have the chance to be part of a research study that will help to inform the future testing and use of the Groups 4 Health intervention in the UK. All young people who are eligible to take part in the study will be paid for completing three assessments, at a rate of £20 per assessment. Travel costs can be reimbursed.

What will taking part involve?

A randomly selected 50% of the young people who participated were offered the Groups 4 Health intervention by a trained facilitator. Groups 4 Health was offered in addition to any support already in place. 

Young people in the study were asked to complete some questionnaires when they first started in the study and then again 10 and 14 weeks later (£20 voucher per meeting). We invited some young people to an informal interview, to tell us in their own words about their experiences of the study.

Who can take part?

Participants were:

  • Aged 16-25
  • Currently a service-user accessing support from a Sussex-based youth/mental health service
  • Currently experiencing mental health difficulties
  • Not currently participating, or confirmed to participate, in another research study that delivers an intervention that targets social isolation or utilizes psychological therapy
  • Not expected to be discharged, or known to be unable to seek support from the referring service, in the 16 weeks following a referral to the trial being made.

Contact details

We will post more information here.

E: askaboutresearch@spft.nhs.uk 

ViBE is exploring the psychological and brain mechanisms underlying voices hearing experiences in people with a diagnosis of Borderline Personality Disorder (BPD). We know that voices hearing is common in people who receive a BPD diagnosis, but unfortunately this is often not recognised by mental health professionals. Very little research has been done to understand what these experiences are like for people with BPD.

We hope this research will increase our understanding of voice hearing, and lead to the development of new therapies for voice hearers with a BPD diagnosis. 

See a publication about the study and another example here.

This study was conducted within Sussex Voices Clinic.

About the Study

This study, led by Dr Aikaterini Rammou, aimed to explore the distress factors of voice hearing in youth and its impact on young people’s social relationships. Our goal was to explore what might make voice-hearing upsetting and learn more about the impact of voice-hearing on the social lives of young people. We compared the social lives of young people who did and did not hear voices.

68 young people, between the ages of 14 and 18 took part, all receiving care from Children and Adolescent Mental Health Services (CAMHS) or Early Intervention in Psychosis services (EIP) within Sussex and Hampshire.

Findings

We are pleased to now be able to share the findings from this study. .

Contact us

Email: Research@spft.nhs.uk

Follow us on social media: @sussexvoices