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The Together Project: supporting the delivery of good practice in maternity services for parents with learning disabilities

Start date

September 2019

End date

Ongoing

Overview

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. In response, Health Education England funded the Together Project to develop resources to support the workforce in delivering good maternity care to parents with learning disabilities.

 

Co-producing resources to support good maternity care for people with learning disabilities

A research team at the University of Surrey conducted interviews with key stakeholders (health and social care professionals, parents with learning disabilities and their informal supporters/carers) to understand views of best practice and to inform resource development. Working together, they co-produced two resources:

  1. The Together Toolkit for professionals working in maternity services, to support the delivery of good care for people with learning disabilities during their pregnancy.
  2. A Maternity Passport to be held by people with learning disabilities who are pregnant and to include the relevant information needed by the professionals who support them.

Find out more

Testing and refining the co-produced resources

Four NHS sites in Kent, Surrey, Sussex and Wessex used the Together Project resources within their maternity systems. Midwives and people with learning disabilities who were pregnant used these resources and took part in interviews with the research team to share their views of the impact the Together Project resources had on their experience of delivering/receiving maternity care. Feedback on these resources was very positive and has informed an updated version of the Together Project Toolkit (for professionals in maternity services) and the Maternity Passport (for parents). Download the Together Project resources.

Testimonials

View a project testimonial

Developing an accessible outcome scale to evaluate parenting programmes for people with learning disabilities

To our knowledge, no accessible tools exist to evaluate parenting initiatives specifically aimed to support people with learning disabilities. An accessible outcome measure is necessary to ensure that the support delivered to people with learning disabilities when they are expecting a baby, continues to be evaluated and improved. In response, we have conducted cognitive interviews with parents with learning disabilities to adapt an existing tool to measure self-efficacy in the antenatal period. Through interviews with parents with learning disabilities and discussion groups with key stakeholders in improving antenatal care for this population, we have created an accessible version of the TOPSE-AN (Tool to Measure Parenting Self-Efficacy - Ante-Natal) measure. An article reporting the development of this scale and scale itself is currently under review. This study was funded by Health Education England. Please get in touch if you would like more information.

Recognising when a parent-to-be may have learning disabilities: an educational film based on learning from the Together Project to facilitate engagement in research

Research conducted as part of the Together Project has highlighted that a significant barrier to the recruitment of parents with learning disabilities to research studies, is recognising which parents may have a learning disability and having the confidence to approach them.  Recognising who has a learning disability is the essential first step to making reasonable adjustments to ensure equitable care.  In response, we are developing and piloting an educational film, based on learning from the Together Project and filmed interviews with key stakeholders, to support professionals working in maternity services to recognise when a parent may have learning disabilities and facilitate their engagement in research. This study is funded by National Institute for Health and Care Research. Please get in touch if you would like more information.

Co-producing, co-delivering and evaluating learning disability awareness training for midwifery students (informed by findings from the Together Project)

The Oliver McGowan Mandatory Training in Learning Disability and Autism (Department of Health & Social Care, 2019) is a celebrated step forward in supporting improved learning disability awareness in health and social care staff.  However, research conducted as part of the Together Project, highlighted that midwives require learning disability awareness training that is specific to maternity care as part of their pre-registration education, to equip them with the skills and confidence to support people with learning disabilities to be the best parents they can be from the very start of their professional careers. In response, we are co-producing, co-delivering and evaluating learning disability awareness training for midwifery students (informed by findings from the Together Project) at the University of Surrey. This study is funded by Health Education England. Please get in touch if you would like more information.

Team

Co-investigators

Cath Taylor profile image

Professor Cath Taylor

Professor of Healthcare Workforce Organisation and Wellbeing

Scott Watkins

Scott Watkins

Expert by experience

Researcher

Athena Ip profile image

Dr Athena Ip

Research Fellow

Advisers and collaborators

Sarah-Jayne Ambler

Clinical Research Manager in Midwifery, Medway NHS Foundation Trust

Carys Banks profile image

Dr Carys Banks

NIHR Research Fellow

Jim Blair

Jim Blair

Independent Consultant Nurse Learning Disabilities and Associate Professor (Hon) Learning Disabilities at Kingston and St George's Universities

Jim Blair

Independent Consultant Nurse Learning Disabilities, Associate Professor Intellectual (Learning) Disabilities at Kingston University and St Georges’ University of London

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

Professor Ann Gallagher

Professor Ann Gallagher

Head of Nursing and Professor of Care Education, Ethics and Research - University of Exeter

Rebecca Greenacre profile image

Rebecca Greenacre

Lead Midwife for Education, Director of Studies, Teaching Fellow Midwifery

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

Fiona Paddington

Programme Manager, LD and Autism, programme Manager for South East, Health Education England

Polly Strauss

Midwife, University Hospitals Sussex NHS Foundation Trust

Dr Kate Theodore

Clinical Psychologist and Senior Lecturer, Royal Holloway University of London

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

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

Experts by Experience

Parents with learning disabilities, Elfrida Society Parent’s Project

Outputs

Midwifery journal article

Read article

Resources

The Together Project Toolkit and guidelines

In this toolkit, we focus on three elements of practice essential to delivering good maternity care to parents with learning disabilities: Identifying need; Preparing for parenthood; and Supporting the journey to baby and beyond. For each of these three elements of practice, we will provide a practice discussion followed by actions for you to complete and questions for you to reflect on and discuss with colleagues. At the end of the toolkit there are useful resources or ‘tools’ to support you in delivering good care for parents with learning disabilities.

Maternity Passport

The Together Project produced a Maternity Passport to be completed with and held by parents with learning disabilities. This will support personalised preparation for parenthood and enable consistent and individualised information sharing with professionals, family and friends. The Maternity Passport seeks to support inter-professional collaboration by enabling each professional to see who else is involved in parents’ support circle and to understand what has, or has not, been discussed with them.  The Maternity Passport can also support identification of gaps in support to alert professionals to necessary referrals.

How to access to the toolkit and passport

The Together Project Toolkit and Maternity Passport are free to use but we ask you to have regard to the following conditions on its use:

  1. Do not distribute this to anyone else – if anyone asks for a copy please ask them fill in the The Together Project resources questionnaire (via the download link below).
  2. If you use the guidance, or any part of it, we would be grateful if you would please:
    1. Acknowledge the authorship team.
    2. Send copies of any reports/papers that are produced to Dr Anna Cox (a.cox@surrey.ac.uk).
    3. Let us have any comments/suggestions that you feel might improve these resources so that your experience can be incorporated into subsequent updates.

Download the toolkit and passport

References

  1. Mencap. (2020). Learning disability explained 
  2. Best Beginnings website 
  3. National Maternity Review (2016) Better Births Improving outcomes of maternity services in England. A Five Year Forward View for maternity care London: NHS England 
  4. Beake, S., Clark, L. L., Turner, T., & Bick, D. (2013). A mixed methods study to develop and pilot a competency assessment tool to support midwifery care of women with intellectual disabilities. Nurse Education Today, 33(8), 901-906. doi:10.1016/j.nedt.2012.08.007
  5. Working Together with Parents Network update of the DoH/DfES Good practice guidance on working with parents with a learning disability (2007) - Social Care Online (scie-socialcareonline.org.uk) 

Research themes

Find out more about our research at Surrey: