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        2. Meet the team
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    2. What is PCIE?
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    6. PCIE Guide
      1. PCIE Guide
      2. Contents
      3. Introduction
        1. Introduction
        2. An overview of ARC KSS
        3. Who can help you with PCIE?
        4. Terminology and PCIE
      4. Why and When to do PCIE
        1. Why and When to do PCIE
        2. Why involve members of the public in research?
        3. Why do members of the public want to get involved in research?
        4. When to get members of the public involved?
      5. How to do PCIE
        1. How to do PCIE
        2. Communication and Accessibility
        3. Budgeting
        4. Planning for involvement and engagement
        5. How to recruit members of the public
        6. Equality, Diversity and Inclusion (EDI)
        7. Approaches – different options for undertaking PCIE
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    3. Learning and DevelopmentLearning and Development
      1. Learning and Development
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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, the Together Project, led by the University of Surrey co-produced resources to support good maternity care for people with learning disabilities. The Together Project is funded by Health Education England, 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).

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

Leading the research, Dr Anna Cox, Senior Lecturer in Health and Social Care, School of Health Sciences at the University of Surrey, said:

" Our research showed how health and social care professional identified barriers to the delivery of good maternity care for parents with learning disabilities. Professionals in maternity services require additional resources to make sure that parent's needs are recognised and they are provided with personalised preparation for parenthood and sufficient support.

"The aim of this study was to develop resources - in collaboration with key stakeholders - to support the workforce in delivering good maternity care to parents with learning disabilities. All our resources, including the toolkit, passport and film are now available to download for free from our website."

For further information and to download the resources click here.

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