By Dr Anna Cox, PhD, CPsychol
Senior Lecturer in Health and Social Care, University of Surrey
Disability Pride Month offers the perfect opportunity to celebrate the contribution of people with learning disabilities to the Together Project1 and its co-produced resources to support good maternity care for people with learning disabilities.
In 2019, Scott Watkin BEM, was invited to be part of the Together Project to help researchers at the University of Surrey to understand and improve maternity care for people with learning disabilities. Scott is a father with learning disabilities, and his passion for the need to improve maternity care has both inspired and driven the project for the last five years. During the project, Scott’s story has been used as an example of how maternity care can and should be improved. His story powerfully highlights the challenges people with learning disabilities have to overcome on their journey to parenthood.
Scott and I have worked in collaboration with people with learning disabilities, researchers, and health and social care professionals, to co-produce resources to support good maternity care for people with learning disabilities. The Together Project resources include the Together Toolkit, for professionals working in maternity services, and the Maternity Passport, to be held by people with learning disabilities (or other individuals who would like an accessible maternity care plan). These resources have been positively evaluated in four NHS Trusts2. In addition, the Together Project has created an educational film, featuring advice and guidance from experts (by experience or profession), to support professionals working in maternity services to respectfully and sensitively recognise when someone they are caring for has a learning disability. These resources are available from the Together Project website.
Working with Beyond Words3, Scott and I are authors of an award-winning book Having a Baby. Within the book, the pregnant woman is offered a copy of the Maternity Passport to support good maternity care. This book and its companion book Loving Babies enable professionals and supporters to have conversations about the practical and emotional experiences of pregnancy and early parenthood.
The National Institute for Health and Care Research Kent, Surrey and Sussex (NIHR ARC KSS) recently funded wider dissemination of the Together Project. Working with Beyond Words, we have used this funding to share hard copies of the Together Project resources and the Beyond Words books with every Head of Midwifery in England. Our aim is for every adult with learning disabilities and every midwife who supports them, to have access to these resources.
We ask for feedback on the Together Project resources from anyone who downloads them from our website, and are delighted with the many positive responses we have received:
"Currently filling this in with a woman whom this will benefit greatly. We have nothing like this in our trust."
"Added to our policy for supporting pregnant women and people."
"I will share these with consultant midwives across the LMNS."
"The video is really useful as a discussion starter and teaching aid."
"This has been used in our team with a couple of families. The families found it really useful."
In addition, the Together Project resources are now used within co-produced and co-delivered learning disability awareness training for student midwives. This training aims to equip student midwives to provide accessible personalised care for people with learning disabilities, from the very start of their professional careers. Funded by NHS England (NHSE) Workforce Training and Education Directorate South East, a team of eight people with learning disabilities worked with us to co-produce and co-deliver this training at the University of Surrey. Our evaluation indicated that the training had a profound impact on the students who took part in the training, and it was also a positive experience for people with learning disabilities who co-produced and co-delivered the training4.
Our training and resources have all been informed by and co-produced with many wonderful people with learning disabilities, but they can be used to improve the support given to other groups. Scott likes to remind everyone that if you’re getting maternity care right for people with a learning disability, you’re getting it right for everyone.
Links to resources and information
1 The Together Project is led by the University of Surrey and 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.
2 The co-production and evaluation of these resources are outlined in two articles published in Midwifery:
- 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.
- Cox A, Parsons T, Watkin S, Gallagher A. (2021) Supporting the delivery of good maternity care for parents with learning disabilities. Midwifery.
3 Beyond Words is a charity focused on improving outcomes for people with learning disabilities, by creating and sharing extensively trialled, word-free picture books that address issues such as healthcare, trauma and relationships.
4 The co-production, co-delivery and evaluation of learning disability awareness training for student midwives is outlined in an article in Nursing Education Today:
- Cox A., Tobutt D., Harris J., Watkin S., Eynon C., Matuska G. (2024) Learning disability awareness training for undergraduate midwifery students: Multi-method evaluation of a co-produced and co-delivered educational intervention in England, Nurse Education Today, Volume 140
Dr Anna Cox, Senior Lecturer in Health and Social Care
Faculty of Health and Medical Sciences, University of Surrey
