CIDER – Cornwall Intellectual Disability Equitable Research

Enhancing the care of people with intellectual disability through research and service development
CIDER – Cornwall Intellectual Disability Equitable Research

Formally launched in October 2018 and led by Professor Rohit Shankar, The Cornwall Intellectual Disability Equitable Research (CIDER), is a partnership between the University of Plymouth and Cornwall Partnership NHS Foundation Trust (CFT) focusing on people with intellectual disabilities.

Activity areas

1. Research: the CIDER Centre – asking research questions and seeking the evidence we need to improve care and treatment.

2. Observatory: collating and analysing data on people with intellectual disabilities.

3. Policy: putting into practice what we have learned from research and observation. Suggesting solutions to NHS England, Local Authorities and NHS Trusts from the evidence.

4. Training: leading and supporting people training as doctors, nurses and other health professions in caring and treating people with learning disabilities.

5. Co-production: putting people and carers at the centre of everything we do.

Current work

I. The study of sudden unexpected death in epilepsy (SUDEP). This has included:

A. case control studies on risk factors

B. the development and evaluation of a risk checklist for SUDEP

C. the development of an app EpsMon to monitor current risk for patients

II. The initiation and development of a disease specific register or cohort of people with comorbid ID and epilepsy. With this register we are examining responsiveness to different anti epileptic drugs in this group. This study has been adopted on the portfolio of the NIHR and has therefore become a national register

III. The collection of DNA samples for this group to a biobank at the University of Exeter. This will enable genetic and epigenetic research for this group

IV. The publication of national guidelines for the treatment of epilepsy in people with intellectual disabilities, published by the Royal College of Psychiatrists.

Evidence of impact

  • The SUDEP checklist has been adopted clinically throughout the UK.
  • The SUDEP checklist has been adopted internationally including in 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.

Projects

Awards

  • ILEA (International League Against Epilepsy) Research Paper of the Year 2017.
  • Dr Shankar was awarded an MBE for services to people with Developmental Disabilities in Cornwall in 2018.
  • BMJ awards – Mental health category (2020), Education (2019), innovation (2017 – highly commended), Neurology (2016).
  • Epileptic Disorders ILAE Educational Prize for best paper (2018).
  • Health Business Awards (2016), National Innovation Accelerator (NIA) Fellowships (2017), HSJ Patient Safety Awards - Education and Training in Patient Safety (2016) HSJ Patient Safety Awards- Patient Safety in Mental Health (2016), Epilepsy Foundation USA - SUDEP Challenge (2016), NIHR commercial principal investigators Award (2016).

The team

  • Professor Rohit Shankar MBE FRCPsych, Professor of Neuropsychiatry at University of Plymouth and Consultant Psychiatrist in Neurodevelopment at CFT – Director of CIDER

  • Dr Richard Laugharne FRCPsych, Consultant Psychiatrist at CFT – Director of Mental Health Research in Cornwall and Deputy Director of CIDER

  • Mrs Sharon Hudson BSc, Lead research nurse for CFT – CIDER Manager

  • Dr David Branford PhD – Specialist pharmacist in intellectual disabilities

  • Professor Gyles Glover FRCPsych FFPH, Public Health Specialist

  • Dr Charlotte Annesley MRCP – Intellectual disability physician

  • Dr Kirsten Lamb MRCGP – Chair RCGP – ID special interest group

  • Mrs Helen Toker-Lester MBA – Social care and commissioning

  • Melanie Walker MBE, CEO Devon Partnership NHS Trust

  • Dr Peter Aitken FRCPSYCH MRCGP DCH DRCOG FHEA, Director of Research and Development, Devon Partnership NHS Trust

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)

Successful grants for research, innovation and educational activities (2016-2021)

  • 2014-2024 – £308,489 - UK Ep-ID Register (NIHR adopted) funded unconditionally by various drug companies and charities
  • February 2021 - £25,000 - NHS England experimental analysis of the morbidity in autistic people in sample GP data
  • October 2020 - £150,000 - ERUK co-applicant to pilot the SUDEP & Seizure Checklist
  • August 2020 – £764,000 - SBRI phase 2 - “Brain in Hand” – co-applicant, research and clinical lead
  • August 2020 – £865,000 - NIHR AI grant to test Bio-Ep – co-applicant and clinical lead
  • August 2020 - £22,153 - Captain Tom NHS Charity fund – COVID risk stratification in people with ID
  • June 2020 - £85,000 - GW Pharma to extend the UK Ep-ID Register to 2-18 year group
  • January 2020 - £1,138,000 - EU satellite Agency (co-applicant) technology in clinical care
  • November 2019 –£151,199 - NIHR RfPB (Co- applicant) Person centred risk communications (epilepsy)
  • January 2019 - £20,000 - Health Education England – Stress wellbeing app for junior doctors
  • February 2018 - £45,000 - NHS England - factors influencing admission of people with ID.
  • September 2018 - £344,138 – Innovate UK (co-applicant) BioEP: Proof of Concept
  • October 2017 - £101,000 - LivaNova to develop study looking at ED admission factors
  • September 2017 - £12,000 - Eisai -perception of challenging behaviour & mental health among epilepsy professionals
  • May 2017 – £20,000 - for PIXIE study – University of Exeter Medical School
  • March 2016 - £20,200 - Bilal to look at neuropsychiatric impact of Eslicarbazepine
  • February 2016 - $30,000 - (co-applicant) SUDEP Challenge Epilepsy Foundation America

Publications (2016 - 2021)

Professor Rohit Shankar MBE, FRCPsych: I have 87 PubMed referenced papers in the period of 2016-2020 (career total: 145) and 5 book chapters. I have Chaired 3 Royal College of Psychiatrists College Reports CR203, 206 & 226 and Step Together. I have named contribution to NHS England & NHS RightCare epilepsy strategy reports. All publications listed in ORCID. 

Alternate depository resources:

John Bull building