SCFT has a diverse range of services and different types of research projects 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.

In particular, 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.

The type of research we carry out includes Urgent Public Health Studies; NIHR CRN Portfolio studies; externally funded non-commercial research; homegrown studies and smaller scale student research projects which form part of an academic qualification.

We collaborate with local, regional, national & international organisations to develop and deliver research projects and support research activity within the community.

To find out about our current research activity, please see our latest Newsletter.

Examples of Research led by SCFT

Speech and Language: developing an intervention together

The long term aim of this research is to develop and trial the feasibility of a complex intervention for pre-school children with comorbid speech and language difficulties. This is because pre-school children with this comorbid presentation are at significant risk of persisting needs relating to communication, emotional wellbeing and education as they grow older. This first stage of this project is being funded as a part of a HEE ICA National Institute of Health Research (NIHR) Pre-doctoral Clinical Academic Fellowship (PCAF). For more information visit: Speech and language: developing an intervention together Research Project

Breathe-Easy Research Study

This research will provide important information about the experiences of children with complex neuro-disability and their families when they use a new postural management night-time intervention. The study is being carried out by a research team from Sussex Community NHS Foundation Trust, Brighton and Sussex University Hospital Trust with funding from British Academy of Childhood Disability and Chartered Society of Physiotherapy. For more information visit: Breathe-Easy Research Study.

Realist Evaluation of AutismServiCe Delivery (RE-ASCeD) Research Study

This study is funded by Public Health England and led by SCFT. Involving SCFT Child Development Centres, it aims to examine existing models of Autism diagnostic service delivery, and to investigate which approaches offer the most timely, cost-effective, high quality and child and family friendly solutions, and in line with realist thinking, to identify the factors that are likely to underpin their success, or failure, if rolled out more generally across providers. For more information visit: RE-ASCeD Research Study.

EDACS - Eating and Drinking Ability Classification System

The Eating and Drinking Ability Classification System (EDACS) offers an alternative to subjective terms such as mild and moderate and severe which have no agreed definition. EDACS was developed by consulting with people with cerebral palsy, parents and experts around the world. It has been tested to see how easy and reliable it is when used by speech and language therapists and parents. EDACS is the product of an independent research project funded by the National Institute of Health Research. For more information visit: EDACS Research Project.

Feasibility Study in Music and Dementia

This inspirational film documents the impact of the research project - ‘Planned investigation, assessment & evaluation of the use of music-based interventions in the community hospital setting’. This six month partnership project was joint-funded and delivered by SCFT and the charity Wishing Well and led by the SCFT Lead Dementia Nurse at a Community Hospital. The project team included a film maker and supervision from the Director of the Centre for Dementia Studies at the University of Sussex.

MOTION (Mechanised Orthosis for Children with Neurological Disorders)

The common challenge of MOTION is to promote the delivery of innovative assistive technology to the health sector.

Although robotic assistive walking devices already exist, they need specific development for children. Furthermore, rehabilitation protocols must be tested and validated simultaneously with training of the health professionals for the efficient implementation of the technology in clinical practice.

Moreover, associated impairments could diminish communication capability of the CP children. Hence, to assure permanent child monitoring, a smart garment that integrates sensing technology suitable for children and that communicates with the exoskeleton, will be developed.

Find out more about the MOTION study.

EDUCAT (Empowerment of Disabled people through the User Coproduction of Assistive Technology

EDUCAT is a European funded project to develop and deliver adaptive, open and modular technology to promote independence and improve quality of life for people with motor impairment and neurological disorders.

The project aims to promote a user-centred assistive technology design using co-design methods involving service users, engineers, clinicians, researchers, user-support networks and companies. A key element of the project is to incorporate monitoring of equipment usage patterns. It is anticipated that analysis of this data will provide diagnostic information on user condition and changes in that condition. This information will improve the prescription of assistive technology, inform the ongoing adaptation of that technology to meet user needs and increase the success rate for the long term provision of assistive technology. The outcome will be to improve the user quality of life. The development is supported by clinical trials throughout the project.

The expected benefits are cost and time savings for companies (for developing technologies) and hospitals (for care) as well as a higher efficiency of use of the technology.

The long term goal is to deliver affordable technology through cross-border collaboration and facilitate uptake on the market.

For more information visit the EDUCAT project website

Partners

• Groupe HEI-ISA-ISEN(FR)
• The University of Kent(UK)
• East Kent Hospitals University Foundation Trust(UK)
• KU Leuven(BE)
• Voka – Chamber of Commerce of East Flanders (BE)
• Sussex Community NHS Foundation Trust (UK)

The project benefits from further involvement of service users and a group of observers: CRN-T APF (FR), DSP Valley (BE), Dynamic Control (UK), ESIGELEG (FR), Eurasanté (FR), KABIF (UK) and SWBF (UK).

This project has received a grant of €1,798,722.60 from Interreg VA 2 Seas programme 2014-2021 co-funded by the European Regional Development Fund.

Clinical research is about the way we improve and provide health care and covers a wide variety of methods and treatments. This can include medication (e.g. pain killers), diagnostic tests (e.g. blood tests) medical devices (e.g. epipens) and therapies (e.g. cognitive behavioural therapy), as well as preventative care and education.

Research is also about improving through experience, seeking opinions and reviewing how healthcare is delivered. Participating in research may involve tracking how you experience your healthcare and treatment and this could be by phone, completing a form or online survey.

The NHS constitution states that it is every patient’s right to be able to participate in a research study, should they wish to, and should they meet the requirements of the study

If you are a patient with us, you may be approached and asked if you wish to take part in a research study. Alternatively, you may wish to ask your clinician if they are involved in any research studies.

Useful links:

Be Part of Research - a NIHR campaign encourages patients, carers and the public to get involved in research and helps you find out about health and social care research that is taking place across the UK.

People in Research  - Opportunities for public involvement in NHS, public health and social care research. Public involvement in research is when the research is carried out with or by members of the public rather than ‘to’, ‘about’, or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking research with research participants.

Join Dementia Research - for people with dementia or memory problems, their carers and anyone who is interested can sign up and get involved in supporting vital research studies across the nation.

NHS Friends and Family Test (FFT) - research participants are invited to give feedback on the service they receive from our research team by completing a short Friends and Family Questionnaire. Please contact the Research Team if you’d like more information or help with completing the questionnaire.

The Health Research Authority (HRA) - sets standards for NHS organisations to make sure they protect your privacy and comply with the law when they are involved in research. The HRA Research Ethics Committees, review research studies to make sure that the research uses of data about you are in the public interest, and meet ethical standards.

Patient Research Experience Survey - if you have recently taken part in a clinical research study/trial the Kent, Surrey & Sussex Clinical Research Network (CRN KSS) would be grateful if you could complete this anonymous questionnaire about your experience, so we can improve our service.

Research Champions - Research Champions are people who have taken part in a research study before, as well as those who haven’t. They volunteer their time to help spread the word about health and care research, and help research and healthcare staff understand more about the experiences of those who take part.

National data opt-out - a service that allows patients to opt out of their confidential patient information being used for research and planning.

The James Lind Alliance - a non-profit making initiative bringing patients, carers and clinicians together to identify and prioritise unanswered questions or evidence uncertainties that they agree are the most important, this is to make sure that health research funders are aware of the issues that matter most.

What is Health Research? Future Learn free online courses - learn how health research happens, why it matters and what to expect if you take part.

Young People’s Advisory Group (YPAG), Kent, Surrey and Sussex - Support the design and delivery of paediatric research in the UK. Members are aged between eight and 19 and meet bi-monthly, coming together for a national meeting once a year. GenerationR is a national network of young people’s advisory groups (YPAGs) based across the UK.

You can also check the Trust details on Patient information and how we use it.

There is evidence to suggest that research active Trusts have better patient outcomes.

We identify research as a direct contributor to improving the quality of services and implementing models of good practice.

All staff are encouraged to participate in research, as it is an excellent opportunity to learn new skills. You can get involved in a number of ways:

• Sign up to the SCFT Research Newsletter sc-tr.research@nhs.net
• Become a key contact in your service for research
• Collaborate in a study on the National Institute for Health Research (NIHR) Portfolio
• Design and carry out your own research project
• Consent to be a research participant

If you are about to undertake a piece of research, it is essential that you read the SCFT Research Guide and contact the Research Team for guidance and information. Please note we only support postgraduate research projects. Masters and PhD students please contact us for advice as soon as you start preparing your research proposal.

Useful links:

National Institute for Health Research (NIHR) - the research arm of the NHS and overarching entity for all publicly-funded research in the NHS.

NIHR Clinical Research Network Kent, Surrey and Sussex (CRN KSS) - provides the infrastructure that allows high-quality clinical research to take place in the NHS in this area.

Health Research Authority (HRA) - provides information about developing research studies and applying for ethical and governance approvals.

Improving Healthcare Through Clinical Research Future Learn free online courses - find out how medical treatments are discovered, tested and evaluated to improve healthcare for all.

Research Design Service South East (RDS) - provides research design and methodological support and guidance to develop grant applications. Advice is confidential and free of charge. Sign up to the RDS mailing list for regular updates and events.

Library and Knowledge Services - can help with Systematic reviews, which bring together all the existing literature on a particular clinical question, advice on academic writing, and managing/formatting references and provide access to evidence resources online.

Applied Research Collaborative Kent, Surrey & Sussex (ARC KSS) - support applied health & care research that responds to, and meets, the needs of local populations and local health & care systems. Sign up to the newsletter for regular updates including funding opportunities and events.

As a NHS provider holding National Institute for Health Research (NIHR) contracts, we are required, every quarter, to publish our performance on study initiation of non-commercial clinical trials and our performance on delivery of commercially sponsored clinical trials.

View SCFT performance reports here: CTP Submission Platform - Public Trust View

For details of studies running at SCFT, research events, project funding & training/academic opportunities, please see our latest research newsletter.

Read our Research newsletters here:

• Research Newsletter - December 2022
• Research Newsletter - September 2022
• Research Newsletter - June 2022
• Research Newsletter - March 2022
• Research Newsletter - December 2021
• Research Newsletter - September 2021
• Research Newsletter - June 2021
• Research Newsletter - March 2021
  
  

The Chailey Sleep Questionnaire

This sleep questionnaire provides a systematic way of identifying sleep problems in children with severe cerebral palsy and provides useful information on which to base a treatment plan. The questionnaire can be completed at a child’s home or in a clinic.

The layout of the Clinical and Sleep Profiles are clear and provide a comprehensive picture of a child’s sleep.

The questionnaire is divided into the Clinical Profile which highlights areas impacting on sleep and a Sleep Profile section which provides a sleep history. It is recommended that a one week sleep diary is completed as well to provide further details of a child’s sleep. Action boxes are used to identify problem areas. Where a red arrow is ticked it is recommended that the information should be brought to the child’s paediatrician.

To order a copy:

Contact Samantha Joslin at samantha.joslin@nhs.net

The Chailey Approach to Postural Management (2nd Edition)

This describes an approach to assessing postural ability in children with neurological impairment, and the provision of treatment and equipment using the principles of developmental biomechanics.

The book will be of interest to physiotherapists, occupational therapists, paediatricians and clinical and rehabilitation engineers, working in the field of neurodisability and rehabilitation. It includes a revised Chailey Levels of Ability assessment chart and supporting CD ROM.

To order a copy:

Contact Samantha Joslin at samantha.joslin@nhs.net

Please contact Samantha Joslin for a current publications list or any further assistance samantha.joslin@nhs.net or telephone 01825 722112

Research in the Community

A partnership event between Sussex Community NHS Foundation Trust (SCFT) & Kent Community Health NHS Foundation Trust (KCHFT)

FREE Online sessions 12-2pm each day.

Sessions will include a keynote speaker, presentations,  abstract posters/presentations, plus question-and-answer sessions and the opportunity to network and join the discussion. 

CPD points awarded for each lunchtime session attended (subject to approval). 

The programme may be subject to minor change and all sessions will be recorded.

To view the programme and register please use the Eventbrite links below:

• Monday 12 June Inclusive Research: everyone counts
• Tuesday 13 June Sustainability: keeping research green
• Wednesday 14 June Digital: transforming health
• Thursday 15 June Integrated Care: working together
• Friday 16 June Celebrating Research Journeys and #Red4Research Day

 #Red4Research aims to get as many people as possible wearing red to demonstrate their support and appreciation for all those participating, undertaking and supporting research. It is an opportunity to showcase and celebrate the phenomenal work, learning legacy and innovative treatments/systems/techniques that have arisen from R&D. For information check here: https://rdforum.nhs.uk/red4research-2023/

All external colleagues with an interest in Research in the Community are welcome.