CIDER – Cornwall Intellectual Disability Equitable Research

Enhancing the care of people with intellectual disability through research and service development
Carnewas and Bedruthan Steps in Cornwall at sunset
CIDER with NHS Cornwall Partnership logo
Formally launched in October 2018 and led by Professor Rohit Shankar, Cornwall Intellectual Disability Equitable Research (CIDER) is a partnership between the University of Plymouth and the Cornwall Partnership NHS Foundation Trust (CFT) focusing on people with intellectual disabilities.
The CIDER team is part of the CFT research team, which delivers clinical research throughout Cornwall. Research is a vital component of NHS care to determine the best treatments and services for improving the nation's mental and physical wellbeing.
The CFT is a research-active NHS trust, meaning that research and adding to the evidence base for healthcare form a key element of our services.
 

Highlighted studies

Epilepsy register
This epilepsy research database is focused on building an ongoing evidence base evaluating the outcomes of anti-seizure medications and epilepsy treatments for people with intellectual disability (ID) and/or pervasive developmental disorders (PDDs) such as autism. This involves collecting data for all people with epilepsy (those with and without an ID and/or a PDD). All patients currently or previously prescribed an anti-seizure medication (or epilepsy treatment) which is part of a live arm of the research database register are therefore eligible to participate.
Efficacy (impact on seizures), tolerability (withdrawal), and other factors are compared for all patients who have an ID or PDD and those who do not have an ID and/or PDD. Where a medication or treatment is prescribed for a specific population of patients with ID and epilepsy, data for this single cohort is analysed.
Five medication arms have been studied between 2015 and 2023 and, following our most recent NHS ethical approval, will continue to 2029 with additional medication arms.

Managing constipation
People with intellectual disabilities are more likely to suffer from constipation than people without an intellectual disability (Public Health England, 2016). This increased risk may be due to medication, suboptimal diet, low physical activity levels or poor mobility, difficulties with communication and poor fluid intake. The issue of constipation for people with intellectual disabilities is a significant problem which causes suffering to patients and can even lead to death (Roy & Simon, 1987; AlMutairi et al., 2020).
This guidance has been developed to support clinicians in both the prevention and management of constipation in people with intellectual disabilities. It will do this with the following actions:
  • Raising awareness of the concerns around constipation in this population
  • Promoting the resources available to support prevention and management
  • Providing a clear approach that is informed by the existing resources and literature
  • Sharing laxative prescribing guidelines developed specifically for adults with intellectual disabilities.
The following documents can be downloaded for use when working with people with constipation:

'Poo Manager' is a game created for the NHS with collaboration FdA Games Design for Industry students at Cornwall College Camborne , a University of Plymouth Partner College. The game was designed for use by the care team when working with people who may have constipation.

Reducing outpatient waiting times
University Hospitals Plymouth (UHP) is a large acute and specialist NHS Trust. Big data analysis of UHP's waiting lists by Optum UK, a commercial innovation partner, demonstrated that people with learning disabilities experienced differential access to elective care, with median outpatient waits of 61 days (50% longer than the general population). People with learning disabilities had longer waits for care than people with any other protected characteristic (such as socioeconomic status, cultural background or gender). While waiting, they sought emergency services five times more frequently than everyone else waiting.
Through coproduction with service users, Livewell Southwest and Cornwall NHS Foundation Trust (their two largest referring NHS organisations) and CIDER, over the course of a year, UHPs multiprofessional team developed a systems approach to cut waiting times by seven days (25%).

Count Me In

The aim

To enable the inclusion of people with intellectual disabilities (PwID) in health and care research, with a focus on commercial research.

How we tackled the project

We consulted a wide range of stakeholders to understand what is currently happening in commercial research in terms of inclusion and understand what would enable inclusion of PwID.
We have also worked alongside an advocacy group, who have provided valuable insights into their views on research participation. They have also helped to analyse and consider the information being gathered from commercial stakeholders.
The project has strong clinical academic guidance which has enabled it to have a wider national/cross speciality viewpoint.

Who was involved

Members of the CIDER team, Professor Rohit Shankar (University of Plymouth), Professor Sam Troman (University of Leicester), Professor Bhathika Perera (University College London), Professor Heather Angus-Leppan (University of East London), ICB, NIHR CRN and Cornwall People First who are a self-advocacy group for people with intellectual disabilities and/or autism.

Results

The project has raised awareness of this underserved population in research with commercial organisations. It has also raised awareness of this issue in the intellectual disability population who were not previously aware of this exclusion from research. Commercial organisations are asking for support and, through Research Engagement Network Cohort 3, we have been able to develop specialism in this area. The advocacy group have increased their confidence in talking about and taking part in research.

Next steps

The toolkit has been developed, and we have applied for further funding to implement the toolkit.

Step Together
The Step Together guidance describes what good quality integrated services for people with a learning disability and epilepsy should look like.
Our summary guide is aimed at encouraging commissioners and providers to audit existing services across both primary and secondary care to understand how they are meeting the needs of the population they serve and to better understand where there are gaps.
The guidance provides examples of how to increase collaboration, improve the provision and consistency of services, and reduce risk and unwarranted variation.

Step Together service evaluation toolkit

Epilepsy Action, in partnership with Professor Rohit Shankar, have developed this service evaluation toolkit, which has been successfully implemented on a regional level across the Midlands NHSE ICS systems as well as within other NHS Trusts across the country.
This toolkit is based on the Step Together guidance, Purple Light Toolkit and the learning from the Clive Treacey Independent Review.
The approach adopted is a self-assessment questionnaire, which is integrated into a digital benchmarking toolkit. By completing the questionnaire, the whole service can be evaluated, helping systems to understand the qualities, standards and variation of epilepsy and learning disability services across an area, for example an integrated care system, an NHS Trust, or a devolved nation.

Ultra-long-term EEG monitoring
We are working in collaboration with UNEEG Medical to research the feasibility and acceptability of using subcutaneous EEG to monitor epilepsy in people with intellectual disabilities.
Patients will visit Derriford Hospital to be implanted with a small EEG device underneath the skin, recording brain activity 24/7 for a period of six months. During this time, carers will continue to track seizures using pre-existing seizure diaries.
It is often difficult to discriminate between epileptic seizures and challenging behaviour, and our current reliance on seizure diaries likely fails to capture the breadth of seizure activity that patients experience. Therefore, we are hopeful that this approach is not only tolerable for this patient group, but that the subcutaneous devices will prove effective in distinguishing between epilepsy and challenging behaviour as well as act as a useful aid in informing clinical decisions and treatment or management approaches.
This study is now open to recruitment. We aim to recruit 10 patients to participate in the study alongside their families and carers.
 
 
 

Evidence of impact

  • The SUDEP checklist has been adopted clinically throughout the UK.
  • The SUDEP checklist has been adopted internationally (e.g., by Epilepsy Action Australia).
  • EpsMon has been downloaded by over 3000 people with epilepsy for self-management of their epilepsy.
  • The Ep-ID register has collected data on 800 people with epilepsy throughout the UK.
  • There is evidence that the Ep-ID register has changed prescribing in epilepsy in people with ID- anti epileptics are more slowly increased in dosage.
  • Professor Shankar is now a member of the NICE Expert Panel on epilepsy and the National Confidential Inquiry.
  • NHS Rightcare toolkit (PDF)
  • Oversaw the development of the national guidance for basic epilepsy training via ESNA, ILAE British chapter and RCPsych ID faculty.
 
 
 

Co-production and patient public involvement and engagement

As a team, we are experienced in working with self-advocacy groups in co-production and patient public involvement and engagement before, during and after research studies to ensure we are meeting the needs and requests of people with intellectual disabilities, their families and care teams.
The building blocks of a successful research study are good co-production.
Illustration of building blocks and figures spelling 'co-production'

Meet the team

Friends of CIDER

  • David Branford
    Pharmacist
  • Dr Charlotte Annesley
    Consultant Psychiatrist
  • Dr Kirsten Lamb
    General Practitioner
  • Professor Sam Tromans
    Associate Professor of Psychiatry and Honorary Consultant Psychiatrist
  • Professor Bhathika Perera
    Associate Professor and Honorary Consultant Psychiatrist
  • Professor John Terry
    Cofounder and managing director of Neuronostics
  • Professor Dan Goodley
    Professor of Disability Studies and Education
  • Professor William Henley
    Professor of Medical Statistics
  • Dr Gyles Glover
    Consultant in Public Health

Collaborators

University of Plymouth collaborators
External collaborators – academic:
  • University of Exeter Medical School: Professor Jonathan Mill and Professor William Henley
  • Falmouth University: Mr Brian Clark
  • UCL Institute of Neurology: Professor Matthew Walker and Professor Ley Sander
  • University of Birmingham – Professor John Terry
  • University of Sheffield – Professor Dan Goodley
  • University of Cardiff – Professor Ian Jones and Dr Lance Watkins
National Institute of Health Research (NIHR)
  • Southwest Peninsula Clinical Research Network (CRN)
  • Southwest Peninsula Academic Health Science Network (AHSN)
  • Peninsula Applied Research Collaboration (PenARC)

Funding

 
The Health and Wellbeing Innovation Centre, Truro

Contact the Cornwall Intellectual Disability Equitable Research (CIDER)

CIDER office
Professor Rohit Shankar

Health & Wellbeing Innovation Centre, Treliske, Truro, Cornwall, TR1 3FF