Following the launch of the Learning Disability Maternity Diamond Standards, we are highlighting how County Durham and Darlington NHS Foundation Trust (CDDFT) is putting these standards into action. In this case study, they share how their dedicated staff are delivering personalised maternity care for women with a learning disability.
The Learning Disability Maternity Diamond Standards include reasonably adjusted care pathways and targeted workforce training. They are designed to support women with a learning disability using maternity services and are based on three core values:
County Durham and Darlington NHS Foundation Trust (CDDFT) is one of the first trusts in the area to successfully embed these standards into routine maternity care. Their experience offers valuable learning for other teams looking to implement the pathway.
Since August 2024, CDDFT has supported 28 women through this pathway, with ongoing input from the Trust’s dedicated Learning Disability and Autism Team.
This team comprises two specialist nurses: the Lead Nurse for Learning Disabilities and the Specialist Nurse for Learning Disabilities and Autism.
Amy Hodgson, Matron for Public Health and Inequalities Maternity at CCDFT, shared: “The introduction of the North East and North Cumbria Learning Disability Diamond Standards has been hugely beneficial for women, enabling the personalisation of care through integrated support from learning disability specialists.
“While implementation at CDDFT came with its challenges, our teams have worked collaboratively and with great dedication to overcome these.
“We are proud to offer this enhanced level of support for women with learning disabilities and or Autism.”
The implementation of the Maternity Learning Disability Diamond Standards has been a collaborative effort, with enthusiastic engagement from the wider maternity workforce, including the Practice Development Midwife and the Matron for Public Health and Inequalities.
To support the rollout, the Maternity Learning Disability Diamond Standards Workforce Education Package was delivered across CDDFT’s maternity services.
The Specialist Nurse led training sessions included in the 2024/25 maternity training programme, ensuring all staff became familiar with the resources and pathways.
These sessions also featured a real-life simulation case study, encouraging discussion on appropriate support and reasonable adjustments. Resources generously provided by the North East and Cumbria Learning Disability Network were distributed to both community and acute maternity teams.
Additionally, the Specialist Nurse engaged with Durham and Darlington Learning Disability Community Teams to raise awareness of the Diamond Standards and share supporting materials.
A key early step was the development of a digital referral form on BadgerNet, created in collaboration with CDDFT’s Digital Midwife. This form enables direct referrals of individuals with a diagnosed Learning Disability and/or Autism to the Learning Disability and Autism Team – with patient consent.
Once submitted, the form is sent directly to both nurses, who then contact the referring midwife. One of the nurses attends the next antenatal appointment to discuss reasonable adjustments and the resources available through the Diamond Standards.
The initial appointment also includes a discussion about placing an electronic flag on the acute system, which helps ensure continuity of support if the woman is admitted later in her pregnancy.
Support from the Learning Disability and Autism Team is entirely person-centred; some women require ongoing input throughout their pregnancy, while others may only need support at specific points.
One challenge encountered early on was the late identification of women with a learning disability and/or autism, which meant that some did not receive the support or adjustments they needed until late in pregnancy.
In response, CDDFT updated its initial maternity contact procedures to include the question: “Do you have a diagnosis of a Learning Disability and/or Autism?” With consent, a referral can now be initiated right from the start.
This change has already shown a positive impact: of the last 10 referrals received, six were for women under 10 weeks pregnant, with the remaining four all under 25 weeks.
CDDFT is now working in close partnership with the North East and North Cumbria Local Maternity and Neonatal System (NENC LMNS) and the North East and Cumbria Learning Disability Network to share and scale best practices across other Trusts.
The Trust has seen firsthand how access to tailored support significantly improves the maternity experience for women with a learning disability.
One service user shared: “It was more supportive. It was like having someone to hold your hand during appointments.
“When you doubt yourself, it’s someone reassuring you that you’re okay and doing the right thing. Now I’ve got someone there supporting me, I’m getting more respect, I feel more listened to.”
Nicola Jackson, Deputy Director for NENC LMNS, said: “Ensuring women with a learning disability receive high-quality, personalised maternity care is a priority for us across the North East and North Cumbria.
“By supporting the rollout of this pathway, we’re helping to make sure all women have access to consistent, compassionate care that meets their individual needs.
“This is a vital step towards equity in our maternity and neonatal services.”
As part of the continued rollout of the pathway, NENC LMNS, North East & Cumbria Learning Disability Network, and CDDFT have co-produced a new animation for staff.
It explains how maternity staff should use good communication, make reasonable adjustments, and follow the Mental Capacity Act to improve care for women with a learning disability.
Kirsty Greenwell, Network Facilitator for the North East & Cumbria Learning Disability Network, shared: “The animation brings the Diamond Standards to life for maternity staff. It shows how reasonable adjustments can make a big difference to the care and experience of women with a learning disability.
“We’d encourage all maternity teams to watch it and keep in mind the three core principles behind the standards: clear communication, making reasonable adjustments, and supporting decision-making in line with the Mental Capacity Act.
“If we get it right for women with a learning disability, we can get it right for everyone.”
If your team is looking to adopt or expand the use of the Learning Disability Maternity Diamond Standards, CDDFT’s experience offers practical insights into what works.
Find Easy Read materials on the pathway here: https://necldnetwork.co.uk/work-programmes/health-inequalities/maternity/learning-disability-maternity-diamond-standards-pathways-workforce-education/
Watch the animation here: Learning Disability Maternity Diamond Standards – YouTube
