The Together Project: supporting the delivery of good practice in maternity services for parents with learning disabilities
Start date
September 2019End date
OngoingAbout
Despite directives to improve maternity care in general and to improve care for parents with learning disabilities, the maternity experience of parents with learning disabilities is often poor and lacking reasonable adjustments to care, due in part to a lack of training and resources. In response, the Together Project, led by the University of Surrey, has brought together parents with learning disabilities, researchers, and health and social care professionals to co-produce resources, training, and an evaluation tool to support good maternity care for people with learning disabilities.
Resources
- Together Toolkit for professionals working in maternity services, to support the delivery of good care for people with learning disabilities during their pregnancy.
- Maternity Passport to be held by people with learning disabilities (or other individuals who would like an accessible maternity care plan) and to include the relevant information needed by the professionals who support them.
- Educational film that features advice and guidance from experts (by profession or experience) to support professionals working in maternity services to recognise when a parent-to-be may have learning disabilities.
- Learning disability awareness training for student midwives co-produced with and co-delivered by people with learning disabilities.
- An accessible tool to evaluate parenting programmes for people with learning disabilities in the ante-natal period.
How to access the resources
The Together Project resources are free to use but we ask you to have regard to the following conditions of their use:
- Do not distribute these resources to anyone else – if anyone asks for a copy please direct them to this web page so they can download them.
- If you use these resources or any part of them, we would be grateful if you would please:
- Acknowledge the authorship team
- Send copies of any reports/papers that are produced to Dr Anna Cox (a.cox@surrey.ac.uk)
- Let us have any comments/suggestions that you feel might improve these resources so that your experience can be incorporated into subsequent updates.
Testimonials and celebration
A specialist midwife’s view of the Maternity Passport.
A parent with learning disabilities view of the Together Project resources.
Celebrating the success of the Together Project with Surrey Choices at the University of Surrey
"I am Beautiful"
"Sweet Child O' Mine"
Team
Principal investigator
Dr Anna Cox
Senior Lecturer in Health and Social Care
Biography
Anna is a Senior Lecturer in Health and Social Care in the School of Health Sciences at the University of Surrey. Her research focuses on the development and implementation of interventions to support the provision of good ethical care throughout the life course. Anna has a particularly interest in the care experience of older people and people with learning disabilities. Anna leads the Together Project funded by Health Education England The Together Project: Supporting the delivery of good practice in maternity services for parents with learning disabilities | University of Surrey
Co-investigators
Scott Watkins
Expert by experience
Researcher
Darya Tobutt
Researcher
Advisors and collaborators (across all phases)
Harman Admane
Public Health Lead LD & Autism, Public Health Team, Surrey County Council
Sarah-Jayne Ambler
Clinical Research Manager in Midwifery, Medway NHS Foundation Trust
Dr Carys Banks
NIHR Research Fellow
Jim Blair
Independent Consultant Nurse Learning Disabilities and Associate Professor (Hon) Learning Disabilities at Kingston and St George's Universities
Lauren Bowller
Autism and Learning Disabilities Nurse Specialist, Royal Surrey NHS Foundation Trust
Sharon Bunford
Named Midwife for Safeguarding Vulnerable Women and Babies, Professional Midwifery Advocate, Royal Surrey NHS Foundation Trust
Caroline Eynon
Lecturer Midwifery, School of Health Sciences, University of Surrey
Professor Ann Gallagher
Head of Nursing and Professor of Care Education, Ethics and Research - University of Exeter
Rebecca Greenacre
Lead Midwife for Education, Director of Studies, Teaching Fellow Midwifery
Helen Guest
Coproduction Programmes Manager, Active Prospects
Kathryn Hollins
Consultant Parent, Child & Family Psychiatrist & Psychotherapist, Surrey and Borders Partnership NHS Foundation Trust
Amy Hykin
Student Midwife, University of Surrey
Ali Jabeen
Operations Manager Elfrida Society Parent’s Project
Isabel Jameson
Midwife, University Hospital Southampton NHS Foundation Trust
Professor Sally Kendall
Professor of Community Nursing and Public Health Centre for Health Services studies, University of Kent
Rowan March
Student Midwife, University of Surrey
George Matuska
Learning Disability and Autism Lead, Kent and Medway NHS and Social Care Partnership Trust
Lindsay Meadows
Specialized family carer advocate, Mencap
Gaynor Morrison
Safeguarding Midwife, Royal Surrey NHS Foundation Trust
Fiona Piddington
Programme Manager, LD and Autism, programme Manager for South East, Health Education England
Polly Strauss
Midwife, University Hospitals Sussex NHS Foundation Trust
Professor Cath Taylor
Professor of Healthcare Workforce Organisation and Wellbeing
Dr Kate Theodore
Clinical Psychologist and Senior Lecturer, Royal Holloway University of London
Jade Vallance
Director of Care, Active Prospects
Danielle Wallace
Research/Fetal Medicine Midwife, Medway NHS Foundation Trust
Vicki Ward
Learning Disabilities and Autism Nurse for Children & Young People, Royal Surrey NHS Foundation Trust
Mariam Watling
Public Health Lead – LD & Autism, Public Health Team, Surrey County Council
Liz Williams
Joint Strategic Commissioning Convener- Learning Disability and Autism and all age Mental Health, Joint Strategic Commissioning Unit Surrey Heartlands ICS & Surrey County Council
Parents with learning disabilities
Working with Elfrida Society Parent’s Project
Experts with lived experience of learning disability
Working with the Coproduction team at Active Prospects
Funders
The Together Project is funded by NHSE Workforce Training and Education Directorate South East, the National Institute for Health and Care Research (NIHR), Applied Research Collaboration Kent, Surrey and Sussex (ARC KSS), and the NIHR Clinical Research Network Kent, Surrey and Sussex (CRN KSS). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of health and Social Care.
Outputs
For details of the development and evaluation of Together Project resources, please see the following articles:
- Cox A, Parsons T, Watkin S, Gallagher A. (2021) Supporting the delivery of good maternity care for parents with learning disabilities. Midwifery.
- Ip, A., Kendall, S., Jabeen, A., Watkin, S., & Cox, A. (2023). A measure to evaluate parenting interventions: Using inclusive research to modify a tool to measure change in parenting self-efficacy during the antenatal period. British Journal of Learning Disabilities, 1–9.
- Cox A, Ip A, Watkin S, Matuska G, Bunford S, Gallagher A, Taylor C (2024) Implementing and evaluating resources to support good maternity care for parents with learning disabilities: A qualitative feasibility study in England. Midwifery.
- Guest H and Cox A (2024) Guides to good maternity care. Community Living
- Cox A, Tobutt D, Harris J, Watkin S, Eynon C, Matuska G (under review) Learning disability awareness training for undergraduate midwifery students: Multi-method evaluation of a co-produced and co-delivered educational intervention in England.