Sussex Community Foundation Trust has a diverse range of services and different types of research projects which take place across the Trust in a variety of settings including inpatient units, clinics, GP surgeries and patient homes. Some research takes place without any ‘in person' contact such as by phone, post, email or online, or researchers may collect information from existing data.
Over the last 20 years, key research has taken place at Chailey Clinical Services, around postural management, powered mobility, and sleep disorders in children with Cerebral Palsy. Chailey Clinical Services is a unique centre that specialises in children's services for children with complex physical disability.
We collaborate with local, regional, national and international organisations to develop and deliver research projects and support research activity within the community.
To find out about our current research activity, please take a look at the specialities below:
Ageing
PALLUP: Improving home-based support for older people with complex needs
Study title
PALLUP: Improving home- based support for older people with complex needs
Lead organisation
University of Surrey
About the study
The study aims to improve the way older people and their families are supported in their final years to have as good as quality of life as possible. The study focuses on older people who are entirely reliant on others for help with needs such as personal care and getting out of the house. Older people and their family carers from community services have already been recruited to the study.
Who can take part?
Please note: This study is no longer open to participants and is in the follow up stage.
Children
CPOS: Children's Palliative care Outcome Scale Validation
Study title
CPOS: Children's Palliative Care Outcome Scale Validation
Lead organisation
Kings College London
About the study
This project aims to help test a questionnaire developed for children and young people who are unwell and their parents/carers. The questionnaire assesses the concerns of children and young people with a serious condition and those of their parents/carers. It is intended to ensure that health professionals ask about and address the things that matter to children and young people and their families.
Who can take part?
Participants identified by the SCFT Children's Community Nursing Teams.
ELSA study: Early Surveillance for Auto-immune Diabetes
Study title
The ELSA study: Early Surveillance for Auto-immune Diabetes
Lead organisation
University of Birmingham
About the study
The ELSA study is testing children (aged 3-13 years) to find markers in the blood (autoantibodies) which will indicate their risk of getting type 1 diabetes in the future. The ELSA study wants to find children with antibodies so that help can be provided sooner by:
- Stopping high risk children from becoming too unwell, by starting treatment sooner
- Offer further research studies that monitor children's risk over time
- Trial new treatments which aim to delay the start of type 1 diabetes
Who can take part?
Children aged 3-13 years of SCFT staff.
If you are interested in taking part, but would prefer not to do the finger stick test at home, please email: s
Impact of AAC on the mental health and wellbeing of children
Study title
The effect of the provision of Augmentative and Alternative Communication (AAC) on the mental health and wellbeing of Children and Young People with complex communication needs.
Lead organisation
Sussex Community NHS Foundation Trust
About the study
This project aims to learn more about the effects the provision of a communication aid (in this case high-tech) has on the mental health and wellbeing of children and young people who are unable to communicate verbally.
The project will run alongside the assessment and provision of a communication aid by the local NHS England specialist AAC (Augmentative and Alternative Communication) Service. Information from children and young people and their parents about the child or young person's wellbeing will be collected before (or at the point of) and 6 months after provision of a communication aid.
Who can take part?
Families identified by the SCFT AAC (Augmentative and Alternative Communication) Service.
KSS Autism: Parameters and Future Care
Study title
Broad Phenotype Children with Autism in Kent, Surrey, and Sussex: Developing a Self-Report Questionnaire Prioritising Individual Self-Care.
Lead organisation
Sussex Community NHS Foundation Trust
About the study
Autism referrals are increasing, with waiting times becoming increasingly longer. With this, more children are struggling to get the support they need in schools. To better understand the needs of autistic children and young people, we are looking to interview autistic children about their experiences in school and what can be put in place to help them. To better understand the true prevalence of autism in Kent, Surrey and Sussex (KSS), schools are being asked to complete a short questionnaire about their school roll.
Who can take part?
Children and young people, with or without their parent/carer and Schools, across Kent, Surrey and Sussex.
Sialanar Drug Utilisation Study (in the iontophoretic treatment of hyperhidrosis)
Study title
Sialanar Drug Utilisation Study.
Lead organisation
Proveca Ltd.
About the study
Sialanar is a treatment for drooling. This research project will test the understanding of the information that is provided with Sialanar and that patient’s carers understand how Sialanar is used, how to change the dose and when to change the dose if the patient experiences side effects.
Who can take part?
Patients and carers identified via Chailey Clinical Services.
Please note: This study is no longer open to participants and is in the follow up stage.
Dementias and Neurodegeneration
CCiC: Continuing Compassion in Care – caring for someone living with dementia
Study title
CCiC: Continuing Compassion in Care - Caring for someone living with dementia.
Lead organisation
University College London
About the study
Caring for someone with dementia can be both challenging and rewarding for family carers. This study will explore family carers' experiences of compassion when they are or were caring for someone living with dementia. By compassion, it means compassion for the self, receiving compassion from others and being compassionate towards others.
Who can take part?
Family/friend carer for someone living with dementia and health and the social care professional who supports carers for people living with dementia.
Please note: This study is no longer open to participants and is in the follow up stage.
EMBED-Care: Empowering Better End of Life Dementia Care Framework feasibility study
Study title
EMBED-Care: Empowering Better End of Life Dementia Care Framework feasibility study.
Lead organisation
University College London.
About the study
This study aims to improve the quality of life for people living with incurable conditions, such as dementia. Palliative care usually focuses on managing symptoms and problems. The new EMBED-Care Framework seeks to improve palliative care for people living with dementia or memory problems. The study team want to understand if it is possible for people with dementia or memory problems, their carers and health and social care professionals to use the new framework.
The EMBED-Care Framework will use a questionnaire to assess and monitor common problems such as pain or low mood. It also aims to identify concerns of relatives or friends. It will support people living with dementia or memory problems, their carers and health and social care professionals to make decisions about care using simple flow charts to manage common symptoms.
Who can take part?
SCFT Patients with Dementia diagnosis, either with/without capacity and family carers of people with Dementia.
Minder Healthcare Management Study
Study title
Minder Healthcare Management Study
Lead organisation
Surrey and Borders Partnership NHS Foundation Trust.
About the study
The use of medical devices is increasing so researchers want to hear from a wide variety of people to ensure future assistive technology is inclusive and easily accessible to all. All data collected in this public survey will be anonymized and will inform an important aspect of a much larger research project called MINDER - Health Management Study.
Who can take part?
Anyone (staff, service users, carers and their families/friends) aged 18 and over, regardless of your experience or knowledge of medical devices.
The survey is online and will take around 10 minutes to complete.
Remember to select Sussex Community NHS Foundation Trust when asked ‘Where did you hear about this survey?’.
MND Register for England, Wales and Northern Ireland
Study title
MND Register for England, Wales and Northern Ireland
Lead organisation
Kings College London.
About the study
This is a research database that will act as a central resource of information from patients with Motor Neuron Disease (MND) in England, Wales and Northern Ireland.
Who can take part?
Patients identified by the MND team specialists and Midhurst Macmillan Service.
Diabetes
EQUIPD: Process evaluation of the EQUIPD study
Study title
EQUIPD – Process Evaluation of the EQUPD Study.
Lead organisation
Northumbria University.
About the study
The purpose of this study is to explore how people engage with, and respond to, the National Diabetes Audit Quality Improvement Collaborative. To achieve this, we would like to interview both people who are involved with the Collaborative and people who have not yet joined.
Who can take part?
Participants identified by the SCFT Diabetes Services.
Frailty and glycaemia in older adults with type 1 diabetes
Study title
Frailty and glycaemia in older adults with type 1 diabetes.
Lead organisation
University Hospitals Sussex
About the study
The aim on the study is to assess whether frailty is associated with increased frequency of hypoglycaemia in older adults with type 1 diabetes.
Who can take part?
People aged over 65 with a diagnosis of Type 1 diabetes for more than 3 years.
REDUCE Trial: Reducing the impact of diabetic foot ulcers
Study title
REDUCE Trial - Reducing the impact of diabetic foot ulcers.
Lead organisation
University of York.
About the study
This study is part of a larger programme of research which aims to reduce the impact of diabetic foot ulcers on patients and the health service (the REDUCE programme). This study will be testing a package of support aiming to help people reduce the chances of another ulcer happening and, should one occur, to help people to access the right support quickly.
Who can take part?
Adults who receive footcare from the Diabetes Care For You Service, and who have a recently healed diabetic foot ulcer.
Health Services Research
Understanding the role of adult Community Health Services in avoiding hospital admissions
Study title
Understanding the role of adult Community Health Services in avoiding hospital admissions: qualitative case studies.
Lead organisation
University of Manchester.
About the study
The aim of the research is to find out how commissioners and providers of adult Community Health Services work together to ensure that the supply of services meets population needs in order to minimise unnecessary admissions to hospital. The project aims to explore: how need for care is defined and assessed; how decisions are made by commissioners about resource allocation to services; how service providers make decisions about the internal distribution of resources; what contractual mechanisms are used; how the performance of service providers is assessed and monitored; and what factors make these processes easier or harder to manage. The ultimate aim is to provide evidence that will be useful to those overseeing the planning and provision of Community Health Services.
Who can take part?
Those with a role in either the commissioning or management of adult Community Health Services.
Mental Health
PROPEL: Predictors of psychological treatment outcomes for CMHP in IAPT
Study title
PROPEL: Predictors Of Psychological treatment outcomes for common mental health problems in Improving Access to Psychological Therapy (IAPT) service users.
Lead organisation
University of Sussex.
About the study
Psychological treatments, such as cognitive-behavioural therapy are effective, however, there are mixed findings and overall, appear only effective for half of the treated adults. Identifying predictors of treatment outcomes could have important clinical implications and allow for tailoring of treatments or development of new interventions. In this cohort study, the impact of a wide range of factors on psychological treatment outcomes for CMHP (Common mental health problems) in the IAPT services will be assessed.
Who can take part?
People identified via the IAPT services.
Please note: This study is no longer open to participants and is in the follow up stage.
Musculoskeletal Disorders
IMID: Immune-Mediated Inflammatory Diseases BioResource
Study title
IMID: Immune-Mediated Inflammatory Diseases BioResource - part of NIHR BioResource.
Lead organisation
University of Cambridge.
About the study
The IMID BioResource is a component part of the NIHR BioResource. It aims to help research into the causes of Immune-Mediated Inflammatory Diseases and understand determinants of IMID severity and treatment response. All volunteers donate a blood sample and consent to be contacted and invited to participate in future medical research, based on analysis of their samples and information they have supplied.
Who can take part?
Patients with immune-mediated inflammatory diseases (IMIDs) and relatives identified by MSK services.
POiSE: Predictors of Outcome in Sciatica Patients following an Epidural steroid injection: a prospective observational cohort study
Study title
POiSE: Predictors of Outcome in Sciatica Patients following an Epidural steroid injection: a prospective observational cohort study.
Lead organisation
Keele University.
About the study
This study is a multicentre prospective observational cohort study to identify prognostic factors associated with outcome following an epidural steroid injection (ESI) for patients with disc-related sciatica. The findings will enable clinicians to better predict if patients are likely or unlikely to benefit from ESI and add to best practice for managing disc-related sciatica.
Who can take part?
Participants aged 18 years or over with a clinical and MRI confirmed diagnosis of disc-related sciatica who are eligible for an epidural steroid injection (ESI) identified through SCFT Coastal Sussex Integrated Musculoskeletal Service.
Please note: This study is no longer open to participants and is in the follow up stage.
Neurological Disorders
CICERO: Cognitive Impairment in Long Covid: Phenotyping and Rehabilitation
Study title
CICERO: Cognitive Impairment in Long Covid: Phenotyping and Rehabilitation
Lead organisation
University College London.
About the study
The study is investigating cognitive impairment in long Covid (“cognitive Covid”). This study has two objectives. The first is to establish how long Covid affects the brain, both in terms of cognitive function and in terms of MRI measures of brain structure and circuitry. The second is to determine whether neuropsychological rehabilitation can improve the outcome of people with cognitive Covid, in terms of helping them return to normal function.
Who can take part?
Patients identified by the SCFT Post COVID assessment and support service.
Please note: This study is no longer open to participants and is in the follow up stage.
TONIC: Trajectories of Outcome in Neurological Conditions: Quality of Life (QoL) and neurological disease
Study title
TONIC: Trajectories of Outcome in Neurological Conditions: Quality of Life (QoL) and neurological disease
Lead organisation
The Walton Centre NHS Foundation Trust.
About the study
Neurological conditions are known to affect quality of life in a number of ways. It is less well understood how these factors change over time. We want to understand how living with MS affects quality of life. Your questionnaires tell us what matters to people like you, and guide us about what is important for quality of life. We hope this will help us to improve our services and care.
Who can take part?
Patients identified by SCFT MS Services.
Please note: This study is no longer open to participants and is in the follow up stage.
Oral and Dental Health
Involving parents to improve tooth brushing for autistic children
Study title
Involving parents to improve tooth brushing for autistic children.
Lead organisation
Sussex Community NHS Foundation Trust.
About the study
Toothbrushing is a self-care skill, which is essential in daily oral hygiene maintenance. However, mouths are extremely sensitive, and if they are over-sensitive, your child may find the sensation of a toothbrush entering their mouth very difficult. Sometimes the taste of toothpaste can be a problem. This study aims to gain feedback from parent and carers regarding the usefulness of current toothbrushing training advice and dental products recommended by dental staff. The study will potentially contribute to the planning of future advice given by dental staff to families of autistic children.
Who can take part?
Families with an autistic child or young person at the participating schools.
Primary Care
Active Brains Study
Study title
Active Brains Study.
Lead organisation
University of Southampton.
This national study is being run by the University of Southampton and funded by the National Institute for Health Research. The study is testing an online programme www.activebrains.online to help people aged 60-85 with lifestyle changes and brain training activities which may help with memory and thinking skills.
Who can take part?
Patients identified via SCFT GP practices.
Please note: This study is no longer open to participants and is in the follow up stage.
Respiratory Disorders
REDUCE - Carbon
Study title
REDUCE - Carbon: Randomised control trial to Understand whether prescribing Choice for inhalers is influenced by knowledge of the CARBON footprint.
Lead organisation
Portsmouth Hospitals University NHS Trust.
About the study
This study is looking to see if knowing the carbon footprint of inhalers would influence HCP prescribing choices for people with Asthma or COPD. Taking part involves completing a short online anonymous questionnaire (10 minutes).
Who can take part?
All Health Care Professionals can take part, you don’t need to be a prescriber or currently working with respiratory patients but do need to have a basic understanding of respiratory guidelines.
Stroke
RECREATE: Reducing sedentary behaviour after stroke
Study title
RECREATE: Reducing sedentary behaviour after stroke
Lead organisation
University of Leeds.
About the study
A multi-centre study looking at the clinical and cost-effectiveness of an intervention versus usual care to reduce sedentary behaviour in people after stroke.
Who can take part?
Worthing Neuro rehab team are involved in this study.
Please note: This study is no longer open to participants and is in the follow up stage.
