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Baby Lifeline (n.d.) MNVP Online Training. Available

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NHS England (2023) Maternity and Neonatal Voices Partnerships: Guidance for LMNS and Providers.

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1. Introduction

Aims of this document

1.1 To provide advice to integrated care boards (ICBs) and trusts on:

1.2 To set out areas to consider when commissioning and supporting effective maternity and neonatal voices partnerships (MNVPs).

1.3 To signpost ICBs and trusts to resources on how to set up and sustain an MNVP.

1.4 The accompanying supporting materials bring together resource templates and example role descriptions that have been developed within Cornwall and the Isles of Scilly Local Maternity and Neonatal System (LMNS).

These are kindly shared to support others in their journey towards improving local MNVPs.

What is a maternity and neonatal voices partnership?

1.5 An MNVP listens to the experiences of women and families, and brings together service users, staff and other stakeholders to plan, review and improve maternity and neonatal care.

MNVPs ensure that service users' voices are at the heart of decision-making in maternity and neonatal services by being embedded within the leadership of provider trusts and feeding into the LMNS (which in turn feeds into ICB decision-making).

This influences improvements in the safety, quality, and experience of maternity and neonatal care.

Background

1.6 Over the last eight years, there have been several major independent investigations into serious harm caused by maternity and neonatal services: University Hospitals of Morecambe Bay NHS Foundation Trust; Shrewsbury and Telford Hospital NHS Trust; and East Kent Hospitals University NHS Foundation Trust.

An overarching theme of all these reports is a failure to listen to service users.

1.7 Significant health inequalities exist in access to and outcomes from maternity and neonatal care in England.

For example, outcomes for women and babies from certain ethnic minority groups are worse than for white women, and outcomes for those living in the most deprived areas are worse than for those in the least deprived (MBRRACE-UK, 2022).

This inequity in outcomes means it is even more important for services to listen to the experiences of these women and their families to ensure services are co-designed to meet their needs.

1.8 There are additional examples of inequalities for those with other protected characteristics: such as those with disabilities, including learning disabilities, and individuals from the LGBT+ community.

They should be able to access their local MNVP and care should be given to hearing and seeking out their voices.

In addition, while most people using maternity and perinatal services are women, intersex, transgender and non-binary people experiencing pregnancy and birth can also experience health inequalities, including poorer access and a lack of information and support for their specific clinical and care needs within maternity services.

[The CQC Maternity Survey (2022) found 0.65% of respondents stated their gender was not the same as their sex registered at birth.]

1.9 The 2022 Review of the funding and function of maternity voices partnerships (MVPs) identified:

"...a high degree of variation in the way MVPs are implemented across England... that the presence and extent of key enablers [for an effective MVP] vary...

"In addition, the role of MVPs has evolved, and expectations placed on them have grown as a result.

"However, a lack of consistency in MVP resourcing and in the provision of training and support pose considerable challenges for MVP functioning."

1.10 The principles for MNVPs described below aim to help ICBs and trusts address unwarranted variation while ensuring there remains flexibility to design MNVPs around the needs of local women and families.

Policy context

1.11 Working in partnership with people and communities sets out the statutory guidance for ICBs and trusts to meet their public involvement legal duties:

"The legal duties on public involvement require organisations to make arrangements to secure that people are appropriately 'involved' in planning, proposals, and decisions regarding NHS services."

1.12 There are clear benefits to working in partnership with people and communities:

Better decisions about service changes and how money is spent.

Improved safety and experience.

It helps address health inequalities by understanding communities' needs and co-developing solutions.

It is about shaping a sustainable future for the NHS that meets people's needs and aspirations.

Reduced risks of legal challenges.

1.13 In the three-year plan, NHS England set out its ambition to better involve service users:

MNVPs listen to and reflect the views of local communities. All groups are heard, including bereaved families.

MNVPs have strategic influence and are embedded in decision-making.

MNVPs have the infrastructure they need to be successful. Workplans are funded.

MNVP leads, formerly MVP chairs, are appropriately employed or remunerated and receive appropriate training, administrative and IT support.

1.14 To achieve these aims, NHS England also set out some expectations of ICBs:

Commission and fund MNVPs, to cover each trust within their footprint, reflecting the diversity of the local population in line with the ambition above.

Remunerate and support MNVP leads, and ensure that an annual, fully funded workplan is agreed and signed off by the MNVP and the ICB. All MNVP members should have reasonable expenses reimbursed.

Ensure service user representatives are members of the local maternity and neonatal system board.

1.15 ICBs have a responsibility to ensure they are delivering on the commitments set out above.

The NHS Resolution Maternity Incentive Scheme Clinical Negligence Scheme for Trusts Safety Action 7 also requires providers to ensure MNVPs function in line with the three-year plan and this MNVP Guidance.

The addition of neonatal voices

1.16 From 2024/25, responsibility for commissioning neonatal critical care services will be delegated to ICBs.

In preparation for this, in May 2022, NHS England published Next steps towards LMNS (via FutureNHS), which sets out plans for greater integration of maternity and neonatal transformation.

It states:

Local service users are co-production partners in maternity/neonatal quality and transformation: the voices of neonatal parents can be heard through either an MVP or PAG (parent advisory group).

LMNS has a clear process for hearing from parents who have received neonatal care and for involving them in co-production work as appropriate.

1.17 Neonatal operational delivery networks (ODNs) PAGs are a group of volunteer parents and carers who have used neonatal services within the region.

Establishing PAGs was a recommendation from the Neonatal Critical Care Review. PAGs ensure service user voice is represented in neonatal service design and delivery at a network level.

MNVPs and PAGs will need to develop relationships and work together to ensure neonatal voices are represented at both network and local level and able to continue to influence decisions once commissioning arrangements have changed.

1.18 To support LMNSs to move towards implementing these actions, this document sets out suggestions for the addition of neonatal care to their remit and how to engage and involve neonatal families in quality and safety surveillance at provider and system level.

This is in line with the three-year plan which specifically includes neonatal in referencing MNVPs.

2. Commissioning effective MNVPs

2.1 Below are listed the ambitions and commitments of the three-year plan, accompanied by advice on how trusts and ICBs can meet these ambitions, in relation to involving service users and their specific commitments, and the necessary considerations at each stage.

Some case examples are given in the supporting materials document.

Engagement and listening to families

2.2 One of the main functions of a MNVP is to engage with and listen to families in their community about their experiences of maternity and neonatal care.

2.3 Effective MNVPs will reflect the ethnic diversity of the local population and reach out to seldom heard groups, including those most at risk of experiencing health inequalities, parents with experience of neonatal care, and bereaved families.

2.4 In all cases when an MNVP is carrying out engagement work, it is good practice to have processes in place to record intelligence and demographic data gathered in line with data protection rules, including GDPR.

2.5 Engagement should be accessible and appropriate, particularly for neonatal and bereaved families. This is not necessarily easy and will require a proactive, but sensitive approach.

When reaching out, it is important to consider how people are protected from being re-traumatised through giving feedback on their experience.

This may involve separate opportunities for engagement, plus training for MNVPs to engage effectively and safely so unintentional harm is avoided.

One important way of ensuring that engagement is handled sensitively is to work in partnership with local specialist voluntary, community and social enterprises (VCSEs) which have lived experience.

This can help gather feedback, prevent duplication of work and avoid potential conflict with neonatal PAGs.

2.6 The MNVP lead is responsible for ensuring appropriate risk assessments, safeguarding procedures and training, including a trauma-informed approach, for all people facilitating engagement in the community or within the maternity and neonatal services are in place.

A clear escalation process should be in place that should always be followed and documented if an immediate safeguarding or patient safety concern is disclosed or identified during MNVP outreach and engagement.

This will be available to staff and volunteers who conduct engagement on behalf of the MNVP.

It is good practice to provide a clear list, signposting to local and national support organisations, that can be easily accessed by all staff and volunteers.

NHS England has committed to developing a national support offer for MNVPs and support with these issues will be available to MNVP leads as part of this.

Fifteen Steps

2.7 The 'Fifteen Steps' approach is about understanding quality from the perspective of people who use maternity and neonatal services.

It is an observational approach whereby small teams of service users and staff explore local maternity and neonatal settings to get a 'feel' for the space and together identify and implement improvements.

Some MNVPs conduct a Fifteen Steps annually in antenatal, intrapartum and/or postnatal care venues plus any neonatal unit on site.

When Fifteen Steps are conducted, outcome reports should be shared with trust governance, safety champions and the LMNS board.

See the Fifteen Steps for Maternity toolkit for detailed guidance.

Walk the Patch

2.8 Walk the Patch is a way of collecting direct feedback from current maternity service users on the maternity unit.

It is intended as a snapshot of women's experience of care on a certain day on the unit and can be collected from women who have birthed in a birth centre or on the labour ward.

Surveys and digital feedback mechanisms

2.9 Effective MNVPs have an easily accessible and ongoing way to gather feedback. This could be via an ongoing survey or an electronic feedback form.

Feedback is regularly analysed, and the data reported into provider trust governance systems and used to influence improvements of the service.

Short running surveys can also be used for focused projects or specific pieces of work.

Those co-producing MNVP surveys and feedback forms should be cognisant of trauma informed language and accessibility requirements. This may require further training.

Outreach

2.10 Effective MNVPs conduct regular engagement out into the community. This could be at venues of care such as antenatal or postnatal clinics, health visitor clinics or community baby groups as well as larger scale community events.

The MNVP ensures regular engagement sessions across the whole patch served by the provider trust or unit.

MNVP engagement includes neonatal families, bereaved families, marginalised groups and local communities more at risk of health inequalities and adverse outcomes as identified by LMNS equity and equality action plans.

Effective outreach involves covering the breadth of the geographical footprint and being reflective of the size and demographics of the local birthing population.

Partnership working with voluntary, community and social enterprises

2.11 MNVP engagement is most effective when it is accessible and appropriate, particularly for neonatal and bereaved families, where MNVPs work in partnership with local specialist VCSEs with lived experience of gathering feedback.

Training for MNVPs to engage with communities including vulnerable and seldom heard groups may be required for feedback to be gathered appropriately and sensitively.

2.12 MNVPs can use social media to support their main functions: primarily to engage with and gather insights from families in their community about their experiences of maternity and neonatal care and to share information and communicate with local people.

MNVPs are independent, and often MNVP social media is separate from any trust or ICB-led social media accounts.

MNVP account managers may want to refer to their local ICB's social media policy for useful best practice principles and guidance, including any considerations in relation to safeguarding.

Thematic analysis of feedback

2.13 Reviewing feedback and data sources regularly enables an MNVP to report on findings to influence decision-making and service improvement.

This includes review of Care Quality Commission (CQC) Maternity Survey data annually, as well as analysis of free text insights from the CQC Maternity Survey.

The MNVP should also liaise with their regional PAGs and care co-ordinator to understand the neonatal service users experience.

Strategic influence and decision-making

2.14 One of the main functions of an MNVP is to participate in and actively influence decision-making on local strategies and policies in maternity and neonatal care.

This section provides some advice on how an effective MNVP can carry this out at different levels within the system.

2.15 ICBs will need to consider how intelligence and influence can be shared across ICB borders where service users access care in a system different from where they live.

Trust-level

2.16 Effective MNVPs have developed strategic influence at trust or unit level.

The role of an MNVP is to bring together intelligence from the activities outlined in paragraphs 2.2-2.13 (Engagement and listening to families) and use that to influence strategic decision-making.

MNVPs also contribute to the quality and safety agenda by providing critical friendship and supporting oversight through the Perinatal quality surveillance model (PQSM).

To do this, the MNVP is embedded within local maternity and neonatal governance. This includes (but is not limited to) safety champion activities, guidelines committees, mortality audits and serious incident response groups.

The MNVP lead is supported to develop and maintain relationships with the senior leaders within maternity and neonatal services and be responsive to any changing local situation and needs of the services.

A clear way in which MNVP leads can influence decision-making is by having them as quorate members of strategic meetings.

LMNS-level

2.17 Service users should have strategic influence at LMNS level.

LMNSs which do this well have a robust feedback loop in place that ensures a clear pathway for how the work of the local MNVP(s) influences and feeds into the work of the LMNS.

2.18 This means formal membership of the LMNS board alongside a formal mechanism to co-ordinate feedback and co-production from all local MNVPs and service users within the system and feed it into LMNS-level activities and decision-making.

It includes involvement with the ICB-level perinatal quality surveillance model (PQSM), shared learning forums and transformation workstreams.

Where the participation of service user voice in the LMNS board and maternity and neonatal quality meetings is required for quoracy, this ensures consistent representation of service user voice.

Leadership

2.19 Each MNVP will need a lead who is a service user. The role of an MNVP lead is:

taking responsibility for leading and managing the MNVP programme of work

making decisions on how the budget is spent

facilitating women and families' voices to be heard from diverse backgrounds

with appropriate operational and logistical support, facilitating and fulfilling the MNVP's responsibilities to engage and co-produce projects with the provider trust/unit

ensuring that key learning is disseminated, and robust governance processes are followed for decision-making

being an equal and respected member of the senior leadership team, developing and maintaining professional relationships to enable critical friendship and strategic influence.

2.20 MNVPs will need a lead with the right leadership skills to influence and lead a complex programme of work and contribute to the quality and safety surveillance framework.

It is also important that this role is fulfilled by a person with lived experience of maternity and/or neonatal services, who is not already employed in the local trust or system, for example as a clinician.

2.21 MNVPs might need a leadership team rather than a single individual. This is likely to be the case when different people lead different elements of the MNVP programme in line with their expertise.

Examples might include having a lead responsible for engagement with seldom heard groups or bereaved parents.

ICBs might particularly want to consider how leads are able to shape neonatal services. One way to achieve this is for a separate strategic lead to be appointed for neonatal care.

2.22 ICBs will need to consider how MNVP leads are appropriately remunerated. This requires matching the level of remuneration with the demands of the role. Remuneration can be through:

employing the lead directly

self-employment and being contracted in

contracting a third party who employs the lead.

ICBs will want to make sure payment is in line with government rules on off-payroll working (IR35) if they are not directly employed.

2.23 ICBs have a responsibility to ensure meaningful service user involvement and engagement at system-level and at trust-level.

To fulfil this, different roles could be considered:

An LMNS service user lead will be responsible for leading co-production and involvement at LMNS level.

In smaller systems, it could be that the LMNS service user lead is also the MNVP lead.

In larger systems, extra co-ordination with separate position(s) for LMNS and MNVP lead(s) might be needed.

See the supporting materials for example MNVP and LMNS lead job/role descriptions and person specifications.

Infrastructure

Operational and logistical support

2.24 As set out in the three-year plan, MNVP leads will need support to enable them and their MNVPs to carry out their function.

A well-functioning and embedded MNVP will likely require several types of operational support, such as:

Accounting and business management, including processing of service user expenses and budget reporting.

Administration: day-to-day work plan monitoring, materials produced for activities and meetings, surveys, Q&A for MNVP members.

IT equipment and software (an NHS email account will allow the MNVP lead to share documents securely and comply with NHS information governance and communication rules).

Project management support.

Communications, stakeholder engagement and publicity such as social media support, media support, promotional materials, branding and event organisation and support.

HR functions, such as recruitment, safeguarding, grievance, and emotional and psychological well-being support.

Engagement and management of volunteer service user voice representatives who form the MNVP membership.

Research, data analysis and reporting, including collation of feedback data.

Data protection and management, including compliance with GDPR

Training.

2.25 There should also be procedures in place to handle grievances raised by an MNVP lead and complaints made against an MNVP lead or member.

2.26 This operational and logistical support could come from existing ICB provision or commissioned through an external provider.

The way in which ICBs provide appropriate support will depend on the system structure and local factors.

For ICBs with multiple MNVPs, much of this support can be shared across MNVPs, achieving economies of scale.

2.27 ICBs will need to make local decisions on the geographical footprint of each MNVP based on local system landscape, geography, demographics and other factors.

They may want to consider that the footprint built around a maternity unit is likely to make most sense to local women and their families, as this is the organisational unit they identify with.

This may mean more than one MNVP per trust. Women and their families are much less likely to identify with other organisations, such as an ICB or multi-hospital trust.

2.28 In any case, ICBs will need to ensure that there is also an infrastructure to enable MNVPs to participate in ICB level decision-making, as set out above.

2.29 ICBs, in partnership with maternity and neonatal stakeholders, will need to decide whether the operational and logistical functions of MNVP(s) will be provided 'in-house' by the ICB or if an external organisation will be commissioned to host the MNVP(s).

2.30 The 2022 Review of the funding and function of maternity voices partnerships showed that MNVPs hosted by ICBs and MNVPs hosted by third-party organisations have both advantages and disadvantages.

Which option works best for each system will be down to local determination, but due consideration of the impact, sustainability and risks of both options are important.

In systems with multiple MNVPs, the operational and engagement support can be shared across MNVPs, whether this is provided by the ICB or commissioned externally.

Workplans

2.31 In addition to the principles set out above on remuneration, effective MNVPs will have good quality workplans in place to deliver the programme of work required to fulfil their remit of listening to and representing service user voice, and the responsibilities set out in national reports, guidance and policy.

A workplan should be flexible enough to respond to the needs of the service and community as these arise and to fulfil the agreed deliverables. The workplan could also include the MNVP strategy, objectives, supporting activities and reporting requirements.

Developing MNVP workplans

2.32 In developing high quality workplans the following best practice should be considered:

1. Co-production - a good plan will be co-produced in partnership with maternal and neonatal stakeholders including the provider trust, LMNS and service user voice representatives.

2. Resourcing - ensure sufficient time and funding is committed to co-producing a high-quality workplan.

3. Information - identify and define the requirements and responsibilities of the MNVP by reviewing national, regional and local policy documents and local intelligence gained from various sources, including but not limited to:

MNVP engagement

the CQC maternity survey

clinical outcomes

quality surveillance.

4. Alignment - ensure alignment with trust, LMNS strategies, as well as the ICB five-year joint forward plan and integrated care strategy, and the national three-year plan. This involves bringing together senior stakeholders from across systems to co-produce the workplan.

2.33 It is good practice for the MNVP workplan to be reviewed and updated regularly, reflecting on the MNVP's work and considering any outstanding and ongoing work and intelligence gathered through engagement and outreach activities.

2.34 MNVPs should seek to reach agreement with their ICB on the content and activity in their workplans.

ICBs are responsible for providing appropriate funding to deliver the workplan. This equally means that the workplan and the level of funding will need to be aligned.

2.35 Where there are disagreements on the content or activity of workplans, where possible these should be resolved at a local level using ICB policies and governance.

Given the link between listening to women and families and the safety of maternity services, as a last resort concerns may be escalated using the PQSM.

2.36 An example of the type of activities included in workplans produced by Cornwall and the Isles of Scilly LMNS are included in the supporting materials document.

Budgets, remuneration and expenses

2.37 It is the ICB's responsibility to provide funding in line with the co-produced workplan and to support the infrastructure and operational support as well as engagement activities for MNVPs.

Effective MNVP budget setting is carried out in conjunction with maternity and neonatal stakeholders including provider trusts, LMNS and service users voice representatives.

2.38 ICBs can make funding available in several ways (and in a combination of different ways), including:

delegating a budget to the MNVP lead to manage (where the MNVP lead is an employee)

entering a contract with a third party to provide funding in return for specified outputs

providing access to in-house services

making direct payments to individuals (for the purposes of remuneration or payment of expenses).

While appropriate financial controls will always need to be in place, the MNVP will find it difficult to operate without easy access to funds to cover basic operating expenses.

2.39 When setting budgets, consideration should be given to leadership roles, operational support and member expenses.

Leadership roles and operational support are not suitable to be provided by volunteers and ICBs will need to consider this as part of their budget setting for MNVPs (bearing in mind that support functions may be delivered through existing roles in the ICB or partner organisations).

A budget template is included in the supporting materials for reference.

2.40 A sufficient budget will also be necessary for engagement activities.

ICBs may wish to consider apportioning sufficient budget from any existing budget for engaging with people and communities specifically to MNVPs. Expenses arising from engagement may include:

Venue and simple refreshments

Facilitation

Translation and interpreting

Promotion.

2.41 It is common practice to offer low-value incentives for participation in engagement activities, such as low denomination shopping vouchers.

This can be a useful tool in ensuring engagement from a broad cross-section of the local community. ICBs may want to facilitate this within the confines of locally determined rules.

2.42 In line with the commitments set out in the three-year plan, and as well as remuneration for MNVP leads, the budget should include reimbursement for all MNVP members for reasonable expenses. These may include:

Travel expenses

Accommodation and subsistence when required

Childcare for when the member is participating in MNVP meetings or activities.

As part of this, ICBs will need an easy process to receive claims and make timely payments.

2.43 There should be at least one service user lead who is formally part of the LMNS board, and they should have a formal mechanism to co-ordinate feedback and co-production with all local MNVPs and service users within the system.

Publication reference number: PRN00823_i

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Maternity and neonatal voices partnership guidance

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1.1 To provide advice to integrated care boards (ICBs) and trusts on: 1.2 To set out areas to consider when commissioning and supporting effective maternity and neonatal voices partnerships (MNVPs). 1.3 To signpost ICBs and trusts to resources on how to set up and sustain an MNVP.

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NHS England (2023) MNVP FAQs for ICBs.

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NHS England » Maternity and neonatal voices partnership: Frequently asked questions – a resource for ICBs

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Classification: OfficialPublication reference number: PRN00823_iii This document sets out answers to questions that integrated care boards (ICBs) may have about ensuring effective maternity and neonatal voices partnerships (MNVPs) in line with the MNVP guidance. These frequently asked questions (FAQs) and answers will be regularly reviewed and updated as required. This information has been co-produced primarily […]

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NHS England (2022) Working in Partnership with People and Communities: Statutory Guidance.

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Document

Summary

This guidance is for Integrated Care Boards, NHS trusts, foundation trusts and NHS England. It supports effectively partnership working with people and communities to improve services and meet the public involvement legal duties.

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Working in partnership with people and communities: statutory guidance

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Health and high quality care for all, now and for future generations

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Sands and MBRRACE-UK (n.d.) PMRT Parent Engagement Materials.

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Parents whose baby has died have the greatest stake in understanding what happened and why their baby died. They should be central to all reviews carried out using the PMRT.

Engaging bereaved parents in the review process and including their views and any concerns and questions they have about their care will enhance the process and ensure that from the outset the review addresses their questions. Parents, particularly mothers, are the only individuals who were present for the whole of the pregnancy and therefore have a unique perspective on everything that happened to them and their baby. Sands has produced a short video outlining the value of parent engagement in the perinatal review process: The Parent Voice: Sands' Charlotte Bevan on parents and the Perinatal Mortality Review Tool (PMRT)

Flow chart for parent engagement in perinatal review

Supporting flowchart notes

Parent Material Templates

Engaging bereaved parents in the review process, does not mean having the parents present at the review, it means talking to them and asking them for their views and any comments or questions so that these can be considered in the review.

We provide materials to support staff in Trusts and Health Boards with engaging bereaved parents. Initial versions were developed by a multidisciplinary group within the MBRRACE-UK/PMRT collaboration including bereaved parents and were based on the findings from the PARENTS study and the 'Being Open' process in Scotland.

In 2024, these were updated by using the Person-Based Approach to development which includes interviewing bereaved parents and clinical staff to get immediate thoughts and reactions and iteratively updating the materials to make them as clear, compassionate and accessible as possible. You can download these below and amend them as needed.

Translated Parent Materials

We are pleased to provide these materials in a range of other languages. You can click the language you need below and a folder containing the materials will download. We have the materials available in , , Simplified Chinese, , , Portuguese, , , , , and .

Plain English guidance for writing letters and summary reports to bereaved parents

Letters and reports written for bereaved parents need to be written using appropriate and sensitive plain language. Examples of poorly written letters were evident in the cases reviewed in recent confidential enquiries. The PMRT will not generate a letter from the technical report suitable for parents but we do provide information about how to write in Plain English

We also include an example of a poor letter, written to parents after the review findings, and an example of how that letter might have been improved with clearer and more sensitively worded information: Poor and improved summary letters.

Bereaved parents really value hearing health professionals express sadness or sorrow at the death of their baby, which in UK law is not an admission of liability. It is important to show a normal, compassionate response to such a distressing loss. Sands statement: "Why saying sorry is not a blame game".

Key contact responsibilities and person specification

Both the PARENTS study findings and the 'Being Open' process recommend bereaved parents being allocated a key contact who can act as a link between the bereaved parents and the perinatal mortality review team. Key contact responsibilities for the responsibilities of the key contact and a person specification.

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The National Perinatal Epidemiology Unit (NPEU) is a multidisciplinary research unit based at the University of Oxford. Our work involves running randomised con

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NHS England (2022) Patient Safety Incident Response Framework (PSIRF).

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The Patient Safety Incident Response Framework (PSIRF) sets out the NHS's approach to developing and maintaining effective systems and processes for responding to patient safety incidents for the purpose of learning and improving patient safety.

Aidan Fowler, National Director of Patient Safety, NHS England - "The introduction of this framework represents a significant shift in the way the NHS responds to patient safety incidents, increasing focus on understanding how incidents happen - including the factors which contribute to them."

Contents

Rt Hon Jeremy Hunt, MP - "The new Patient Safety Incident Response Framework is very welcome. It is great to see the involvement of those affected by patient safety incidents at its heart and the emphasis on learning and improvement are vital if we are to reduce avoidable harm across the NHS."

A new approach to responding to patient safety incidents

The PSIRF will replace the current Serious Incident Framework (2015).

The framework represents a significant shift in the way the NHS responds to patient safety incidents and is a major step towards establishing a safety management system across the NHS. It is a key part of the NHS patient safety strategy.

The PSIRF supports the development and maintenance of an effective patient safety incident response system that integrates four key aims:

1. Compassionate engagement and involvement of those affected by patient safety incidents

2. Application of a range of system-based approached to learning from patient safety incidents

3. Considered and proportionate responses to patient safety incidents

4. Supportive oversight focused on strengthening response system functioning and improvement

Who does PSIRF apply to?

The PSIRF is a contractual requirement under the NHS Standard Contract and as such is mandatory for services provided under that contract, including acute, ambulance, mental health, and community healthcare providers. This includes maternity and all specialised services. Primary care providers may also wish to adopt PSIRF, but it is not a requirement at this stage. Further exploration is required to ensure successful implementation of the PSIRF approaches within primary care.

Dr Sean O'Kelly, Chief Inspector of Hospitals and Interim Chief Inspector of Primary Medical Services, Care Quality Commission - "We welcome the publication of NHS England's new Patient Safety Incident Response Framework (PSIRF) and the focus it places on effective learning and compassionate, meaningful engagement with those affected when incidents occur. Through our monitoring and inspection we have seen how the existence of a strong organisational safety culture, where the views of staff and patients are listened to and acted on, and learning is prioritised is essential to good practice in responding when things go wrong."

Saffron Cordery, Interim Chief Executive, NHS Providers - "We welcome this framework as a key tool to ensure that investigation processes and responses by trusts lead to effective learning and improvement, contributing to better patient safety and outcomes - the top priority of trust leaders."

PSIRF podcasts

We are continuing to record a series of podcasts to help introduce PSIRF and support providers to prepare for its implementation. Links to these podcasts are listed below, in chronological order from newest to oldest:

Early adopters share their experiences

In the videos below early adopters describe their experience of implementing PSIRF

Lucy Winstanley, Head of Patient Safety and Quality, West Suffolk NHS Foundation Trust

Megan Pontin, Patient Safety Incident Investigator, West Suffolk NHS Foundation Trust

Saranna Burges, Director for Patent Safety and Quality, Norfolk and Suffolk NHS Foundation Trust

Lisa Falconer, Head of Clinical Quality and Patient Safety, NHS Derby and Derbyshire ICB

Preparing for PSIRF

Implementation of PSIRF will not be achieved by a change in policy alone, and it cannot be implemented in days or weeks as it requires work to design a new set of systems and processes. To help organisations prepare to transition to PSIRF we have developed a preparation guide to support those leading PSIRF implementation across the NHS.

Organisations are expected to transition to PSIRF within 12 months of its publication, and transition should be completed by Autumn 2023. The preparation guide breaks PSIRF preparation into six phases to ease transition and provide detail around discrete activities that will set strong foundations for implementing the framework.

Dr Rosie Benneyworth, Interim Chief Investigator at the Healthcare Safety Investigation Branch (HSIB) - "We welcome the publication of the Patient Safety Incident Response Framework (PSIRF), a significant development in the patient safety landscape in England. PSIRF reflects the key principle that guides our national patient safety investigations - a focus on understanding how incidents happen rather than attributing blame or liability - and applies this to local investigations. As well as co-authoring the supporting guidance around involving patients, families and staff, HSIB has developed a range of training courses to help NHS trusts put PSIRF into practice."

Supporting documents

The PSIRF is supported by further detail provided in four guidance documents:

Engaging and involving patients, families and staff following a patient safety incident

Guide to responding proportionately to patient safety incidents

Oversight roles and responsibilities specification

Patient safety incident response standards

We have also produced templates to guide organisations through the development of their patient safety incident response policy and patient safety incident response plan

Engaging and involving patients, families and staff following a patient safety incident

Compassionate engagement and involvement of those affected by patient safety incidents is central to PSIRF.

Please visit our Engaging and involving patients, families and staff following a patient safety incident webpage for further information.

Learning response toolkit

The PSIRF promotes a range of system-based approaches for learning from patient safety incidents. Organisations are encouraged to use the national tools and guides available in our learning response toolkit.

The national tools have been developed in collaboration with human factors experts and the Healthcare Safety Investigation Branch, who lead the way in modern healthcare safety investigation methodology. They have been tested with representative end users whose feedback has been instrumental in informing the design.

We will continue to review and evaluate the design of the Patient Safety Incident Investigation report template.

If you would like to provide feedback, please contact patientsafety.enquiries@nhs.net

Join our PSIRF FutureNHS workspace

Further resources (including webinars, podcasts and additional tools) to support providers to prepare, transition and work under PSIRF will be made available throughout 22/23 via our PSIRF FutureNHS workspace. This workspace is part of the NHS Patient Safety workspace

We will also use this workspace to communicate with staff and local stakeholders via the message board. This workspace is available for anyone to join (you don't need an NHS email). If you're not a member and would like to join please email NHSps-manager@future.nhs.uk.

Upcoming PSIRF webinars

To continue to support organisations as PSIRF goes live, we are hosting a further series of webinars up to September 2024, to share experiences and learnings as the framework is operationalised.

Register via the links below:

Developing PSIRF

Reports by the Public Administration Select Committee in March 2015; the Government's response in July 2015; the Parliamentary and Health Service Ombudsman's report in December 2015; the CQC's report in June 2016, and the CQC's report in Dec 2016 all identified shortcomings in the way patient safety incidents are investigated and learned from.

In response to these reports, in 2018 we conducted a widespread engagement exercise around the future of NHS patient safety investigation to gather thoughts and feedback to support us to develop the PSIRF to replace the existing Serious Incident Framework.

The PSIRF was developed based on the feedback received through our The future of NHS patient safety investigation engagement activity.

Published in March 2020 the Introductory PSIRF was tested by 24 early adopters (including 17 provider organisations alongside their commissioners and regional leads) for two years. The early adopter programme was independently evaluated and alongside feedback from our early adopters has informed the development of the PSIRF (2022).

The evaluation report is available on our FutureNHS workspace.

List of early adopters

Listed by region, we would like to thank the following early adopter organisations that have been instrumental in the development of the final version of the PSIRF:

East

Norfolk and Suffolk NHS Foundation Trust

East Suffolk and North Essex NHS Foundation Trust

Essex Partnership University Foundation Trust

West Suffolk NHS Foundation Trust

NHS Suffolk and North East Essex ICS

London

London Ambulance Service NHS Trust

North West London Collaboration of ICSs

Midlands

Chesterfield Royal Hospital NHS Foundation Trust

Derbyshire Community Health Services NHS Foundation Trust

Derbyshire Healthcare NHS Foundation Trust

Derbyshire Health United

University Hospital Derby and Burton NHS Foundation Trust

NHS Derby and Derbyshire ICS

National

Care UK (Independent provider of healthcare in prisons)

North East and Yorkshire

Leeds Teaching Hospitals NHS Trust

NHS Leeds ICS

North West

East Lancashire Hospitals NHS Trust

NHS East Lancashire

South East

Isle of Wight NHS Trust

NHS Isle of Wight

South West

Cornwall Partnership NHS Foundation Trust

North Bristol NHS Trust

Royal Cornwall Hospitals NHS Trust

NHS Kernow

Get in touch

If you would like to get in touch, please contact Patientsafety.enquiries@nhs.net.

Alternatively, you can use the PSIRF discussion board on our FutureNHS platform.

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Patient Safety Incident Response Framework

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The Patient Safety Incident Response Framework (PSIRF) sets out the NHS's approach to developing and maintaining effective systems and processes for responding to patient safety incidents for the purpose of learning and improving patient safety.

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Sands and Partners (n.d.) National Bereavement Care Pathway.

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Home - National Bereavement Care Pathway

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Welcome to the NBCP England website. Here you'll find all the information you need to care for families after pregnancy loss or the death of a baby.

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Bliss (n.d.) Baby Charter.

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Explore more about the Bliss Baby Charter and the impact units are making.

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Care Quality Commission (n.d.) Maternity Improvement Resource.

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The following guides are for staff, leaders at all levels, the board and integrated care boards. The guides outline our expectations for staff knowledge about their service and the key elements we want to see implemented. These guides aim to support staff at various levels in understanding what we consider to be the hallmarks of a good service.

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UNICEF UK (n.d.) Neonatal Standards – Baby Friendly Initiative.

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Skip to main content

This resource provides in-depth guidance on the Baby Friendly neonatal standards and how to achieve Baby Friendly accreditation.

Free to download and print, and with a foreword by Martin Ward Platt (consultant paediatrician, neonatal medicine), this comprehensive document provides a roadmap for the journey towards accreditation, as well as tips, ideas and case studies. It is intended to be read alongside our accreditation pages and the Baby Friendly Initiative guide to the standards, both of which explain the assessment process in detail.

The neonatal guidance document is just one of the resources available to support neonatal units. Here is the full list:

Joint neonatal projects

Find out how neonatal units can implement the Baby Friendly standards as part of a cost effective joint project

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Guidance for neonatal units - Baby Friendly Initiative

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This resource provides in-depth guidance on the Baby Friendly neonatal standards and how to achieve Baby Friendly accreditation.

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BAPM (2015) Newborn Early Warning Trigger and Track (NEWTT) 2.

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British Association of Perinatal Medicine

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Newborn Early Warning Trigger & Track (NEWTT) - a Framework for Practice (2015)

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NHS England (2020) Neonatal Critical Care Transformation Review

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Neonatal Critical Care Service Specification.

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BAPM (2021) Family Integrated Care Guidance.

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British Association of Perinatal Medicine

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NHS Resolution (2023) Maternity Incentive Scheme.

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Maternity incentive scheme - NHS Resolution

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Latest updates Revised maternity incentive scheme guidance for year 5 On Monday 23 October 2023, we sent Trusts a letter on the revised maternity incentive scheme guidance for year 5. The letter is available to read here The MIS Year 5 Board Declaration Form has …

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Final report of the Ockenden review - GOV.UK

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Findings, conclusions and essential actions from the independent review of maternity services at the Shrewsbury and Telford Hospital NHS Trust.

Applies to England

Documents

Request an accessible format.

If you use assistive technology (such as a screen reader) and need a version of this document in a more accessible format, please email publications@dhsc.gov.uk. Please tell us what format you need. It will help us if you say what assistive technology you use.

Details

This review of maternity services at the Shrewsbury and Telford Hospital NHS Trust independently assesses the quality of investigations relating to newborn, infant and maternal harm at the trust.

This final report of the review covers the findings, conclusions and essential actions of this independent review of maternity services.

Based on a review of all family cases that formed part of this investigation, the final report outlines:

system-wide learnings

immediate and essential actions to improve maternity care

It follows a previous report on emerging themes and trends identified from examination of 250 fully assessed cases, which was published in December 2020.

The Independent Maternity Review (known as the Ockenden review) is led by senior registered midwife Donna Ockenden.

Thank you for your feedback

Report a problem with this page

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Findings, conclusions and essential actions from the independent review of maternity services at the Shrewsbury and Telford Hospital NHS Trust.

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Sands - Saving babies' lives. Supporting bereaved families.

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Sands’ parent surveys and reports | Sands - Saving babies’ lives. Supporting bereaved families.

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Parents’ experiences are at the heart of what we do

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Home - Sands And Tommys Joint Policy Unit

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Achieving Policy Change To Save More Babies Lives During Pregnancy

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Resources & Further Information Support for you Bereavement care can be professionally and emotionally challenging for staff in any setting. Sands is here to support anyone affected by pregnancy loss and baby death, including healthcare staff, volunteers and workplace professionals. Call our helpline if you would like to talk someone in confidence.

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We’re here to provide information and support for anyone who has experienced a miscarriage, stillbirth, neonatal death or termination for medical reasons.

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Black women in the UK are four times more likely to die in pregnancy and childbirth than white women, and Asian and mixed-race women are twice as likely.

Download our report Systemic Racism, Not Broken Bodies, the evidence from our year-long inquiry into racial injustice in maternity care.

What are my human rights in pregnancy and childbirth?

Do I have the right to a home birth? How do I make a complaint? Can I choose my midwife or doctor? Our factsheets cover everything you need to know about your basic human rights in pregnancy and childbirth.

If you are thinking about pregnancy, are pregnant or have recently given birth and need further information or advice, our team is here to help you.

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Birthrights - your human rights during pregnancy and maternity care

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✓ Information and advice during pregnancy & childbirth ✓ Factsheets ✓ Translated pregnancy factsheets ✓ Maternal requests for caesareans ✓ Homebirths ✓ Training for healthcare professionals, doulas and childbirth educators ✓ Campaigning for change ✓ Your human rights during pregnancy and childbirth

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4 times as many boys are diagnosed autistic as girls. This is not an accurate picture.

Frequently, for many reasons, girls are diagnosed later (on average up to 6 years later), missed or misdiagnosed, causing long term mental health problems with too many girls feeling too anxious to attend school as a result.

Currently the assessment tools used to screen for autism are male-centric. We want to see tools in place that reflect multiple presentations and needs so that no child's need goes unrecognised or unsupported. We are currently pilot-validating the Internal Presentation of Autism Checklist that sits within our white paper Autism, Girls and Keeping it All Inside , so expect that to change soon. Our survey had 1123 responses in a week, so there are many people who feel strongly about having screening tools which feel representative. Our vision is for a system that enables autistic girls to thrive, to feel understood and to achieve the best educational outcomes.

Our aim is to raise awareness of autism in girls and others who present in an internal way with health, social care and educational professionals and to bring change. Not only to the way that autistic girls are assessed and subsequently supported but to the narrative, with updated and positive terminology used to describe autistic traits.

Our private Facebook group supports both autistic girls and women and their extended families, but there are many more who need our help. We are now a registered charity, fundraising to enable us to both fund projects which offer face to face support and campaign for real change.

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We are a small registered charity working to support, educate, and bring change. Here you will find lots of resources.

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Improving maternity care and support for pregnant women with disabilities - Royal College of Midwives

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In her latest blog Clare Livingstone, Head of Professional Policy and Practice shares an update on the RCM’s work to improve maternity care and support for pregnant women with disabilities Disabled women make up 20% of women of reproductive age (15-49 years) in the UK, equating to 2.9 million women. Despite this, emerging evidence here […]

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What rights do I have to NHS maternity care?

Everyone is legally entitled to medical attention from healthcare professionals during their pregnancy, childbirth and after their baby is born.

This is because serious and occasionally life-threatening complications can occur in pregnancy and childbirth.

Article 2 of the European Convention on Human Rights protects everyone's right to life. It requires every country to give everyone access to basic life-saving services. These services include maternity care in hospital.

Human rights mean that you must be treated with dignity and respect during your care. You can read more in our factsheet Human rights in maternity care.

Do I have the right to additional support during my maternity care if I am disabled or have a long-term health condition?

Yes. Human rights law and equality law give you rights to additional support during pregnancy and childbirth if you are disabled. Equality law in England, Wales and Scotland describes disability as 'a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on your ability to do normal daily activities'. This can include physical, sensory and learning impairments. It can also include long-term health conditions such as epilepsy. If you have an impairment or long-term health condition that meets this description you have the right to additional or different support even if you do not identify as disabled.

Your maternity care must be safe and support your needs. It must respect your dignity and allow you to make your own decisions. You must not be discriminated against because you are disabled.

This is covered in Article 14 of the European Convention on Human Rights.

If you are disabled and need different or extra support during your pregnancy, childbirth and after the birth, talk to your midwife or other healthcare professional as soon as you can. Together you should be able to plan the support you need.

Your NHS Trust must make reasonable adjustments to make sure you can access the same maternity care as anyone else. This is covered in the Equality Act 2010.

What reasonable adjustments can I ask for?

Reasonable adjustments should be personalised for you, to make sure that you have equal access to care.

Reasonable adjustments are often fairly simple. For example, they might include:

access to a disabled toilet and shower and any aids you might need

space for your wheelchair in the postnatal room

large print information or information in a suitable format for your screen-reading software

appropriate and safe lighting - this could be lighting to enable you to lipread or it could be lighting that will not cause you pain or discomfort if you are sensitive to light

longer appointments

an advocate if you need communication support

tours of the birth centre or labour ward even if these are not normally offered

an opportunity to try getting into and out of a birthing pool to see what support you might need

planning to minimise noise if it might cause you distress

additional support on the postnatal ward.

The healthcare professionals supporting you should find out from you what your particular needs are and be flexible in finding the best support for you.

Your healthcare professionals should ask for help from other teams in the hospital, such as Occupational Therapy or the communication or information support teams if necessary. They may also wish to talk to any other professionals involved in your healthcare.

If you are receiving specialist care for any long-term conditions, your different healthcare professionals should work together to support you during your maternity care, even if they are based in different locations. You can talk to your midwife about how to record your needs so that everyone involved in your care can easily see what they are.

Our factsheets on Can I choose where I give birth? and Consenting to treatment describe some examples of reasonable adjustments that healthcare professionals could consider in different situations.

These are ideas only: reasonable adjustments must be based on your personal situation and needs.

You can find a list of additional resources which may be helpful if you are pregnant and are disabled or have a long-term health condition at the end of this factsheet.

What if I am not disabled but I need additional support?

If you feel you need additional or different support, for example if you have previously experienced trauma, you can talk to your midwife during your antenatal care about what you need and what is important to you. It can help if you are able to explain why you need additional support. Your midwife should support you as far as possible.

What other support and resources can I find?

If you are disabled and pregnant you may find the following organisations and resources helpful:

Mumslikeus is a supportive network for disabled mothers and those who care to share resources, ideas and support for each other.

Remap is a charity whose skilled volunteers custom-make equipment for disabled people, including baby care equipment.

Charities such as Scope and Mencap can also offer advice and support to disabled parents. Organisations such as Voiceability can provide advocacy support.

The Elfrida Society offers support to people with learning disabilities.

The Maternal Mental Health Alliance provides and signposts to information and support on mental illness during maternity.

Family Rights Group offers more information if you are disabled and would like help to care for your child.

The Disability Law Service can provide free legal advice for disabled people.

Law and guidance
Article 14 of the European Convention on Human Rights
This prohibits discrimination on a wide range of grounds including disability, sex, race, religion, language, immigration status and national origin. It requires that all human rights and freedoms should be protected for everyone and applied without discrimination.

It requires that all of the rights and freedoms set out in the European Convention must be protected and applied without discrimination. This means that everyone should have equal access to safe and appropriate maternity care that respects their dignity and autonomy.
The Equality Act 2010
This says that public bodies, such as the NHS, must take all reasonable steps to eliminate discrimination and advance equality of opportunity when providing services. This means that people with protected characteristics must be able to access the same maternity care as any other person, and that reasonable adjustments need to be made to facilitate this.

In practice this means that your maternity care providers should be talking to you about what support and adjustments you need to ensure that your access to maternity care is not disadvantaged. What is considered 'reasonable' is ultimately a decision for the Courts and may depend on different factors including effectiveness, practicality and cost, but Trusts should be engaging proactively with you about your personalised support needs and thinking broadly about how they could be met.

The NHS has been trialling Reasonable Adjustment Flags, a way for people's needs for extra support to be highlighted to healthcare professionals every time they use the health service.
About Birthrights
Birthrights factsheets give you information about your human rights when you are pregnant and giving birth.

Birthrights champions respectful care during pregnancy and childbirth by protecting human rights. We provide advice and information to women and birthing people, train doctors and midwives, and campaign to change maternity policy and systems.

We are a charity, independent of the government and the NHS.

Disclaimer: Our factsheets provide information about the law in the UK. The information is correct at the time of writing (May 2021). The law in this area may be subject to change. Birthrights cannot be held responsible if changes to the law outdate this publication. Birthrights accepts no responsibility for loss which may arise from reliance on information contained in this factsheet. Birthrights has provided links to third party websites where these may help provide relevant further information. Birthrights takes no responsibility for the contents of linked websites and links should not be taken as an endorsement.

Do you work with pregnant women and birthing people?

Our training equips doctors, midwives and other birth workers with knowledge of the law and human rights principles, an understanding of how to apply it in practice, and the ability to communicate effectively with women and birthing people in a way that upholds their human rights. We offer a 10% discount to multidisciplinary teams.

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Disability and long-term health conditions and maternity care - Birthrights

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What rights do I have to NHS maternity care? Everyone is legally entitled to medical attention from healthcare professionals during their pregnancy, childbirth and after their baby is born. This is because serious and occasionally life-threatening complications can occur in pregnancy and childbirth. Article 2 of the European Convention on Human Rights protects everyone's right ...

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NHS England » Maternity and Neonatal bulletin

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NHS England » Maternity and Neonatal bulletin

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Bliss’ enewsletter for healthcare professionals | Bliss

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Keep up to date with our news and the latest in neonatal care and research through our enewsletter - the Bliss Journal for healthcare professionals.

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Support for VCSE :: Workforce Transformation

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Schwartz Rounds provide a structured forum where all staff, clinical and non-clinical, come together regularly to discuss the emotional and social aspects of working in healthcare.

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National Maternity and Neonatal Recommendations Register

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Use this register to find recommendations from published reports, grouped by topic, service user and care setting.

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The everyday, little things we do make a difference to the care we provide to our service users and experiences of staff working in the NHS.

Understanding what and how we do these things is crucial to building positive safety cultures.

Safety culture is the the relationships, practices and values of EVERYONEin the NHS, performed EVERY DAYto provide COMPASSIONATE CARE for all.

But, finding the time to work out what we are doing well in our teams and making 'safety culture' tangible can seem overwhelming.

Moments is a framework to explore local safety cultures through everyday practices. We have designed a practical and easy to run workshop for healthcare professionals to support local safety culture improvement.

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The everyday, little things we do make a difference to the care we provide to our service users and experiences of staff working in the NHS. Understanding what and how we do these things is crucial to building positive safety cultures.

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What are the influences on women’s preferences and decision-making when planning mode of birth in high-income countries? A qualitative systematic review

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In antenatal care in the UK NHS, the concept of choice of mode of birth (MOB) has been recommended for some years but is still poorly operationalised.…

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3817_EBM Leaflet Giving your Baby Expressed Milk

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Mothers on… nursing with large breasts – La Leche League GB

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We asked mothers across the country to share their experiences of breastfeeding with large breasts. Nicols : I used to have to lift/prop my breast with a rolled

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2631 Housley Road, Suite 1122, Annapolis, MD 21401 | Tel (443)-203-8553 | Fax (410)648-2570 | This email address is being protected from spambots. You need JavaScript enabled to view it.

Copyright © Lactation Education Resources. All Rights Reserved.

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Lactation Education Resources provides online lactation courses following the IBLCE blueprint designed to prepare students to sit for the IBLCE exam to achieve certification or recertification as lactation consultants.

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Neurodivergent individuals, including those with ADHD, autism, dyslexia, dyspraxia, or sensory processing differences, experience pregnancy, birth, and early parenthood through a unique cognitive and sensory lens. Yet most maternity care pathways are built around neurotypical expectations, leading to unmet needs, increased distress, and poorer health outcomes.

A lot of Autistic adults may mask their needs during medical appointments to avoid being judged or misunderstood.

ADHD and Autism are underdiagnosed in women, and often only recognised when the cognitive demands of pregnancy and parenting exacerbate executive function difficulties.

Emotional dysregulation, sensory sensitivities, and rejection sensitivity dysphoria (RSD) all increase during the perinatal period and contribute to maternal distress, anxiety, and even suicidality.

Importantly, many neurodivergent parents do not yet have a formal diagnosis or may not recognise themselves as neurodivergent until well into parenthood. This makes individualised, neurodiversity-affirming care planning essential for every parent, not just those who disclose a diagnosis.

Key Principles for Neurodivergent-Affirming Care

Many neurodivergent people experience sensory hypersensitivity or hyposensitivity. The perinatal environment, with its bright lights, unpredictable noise, strong smells, and frequent touch, can be overwhelming.
Practical actions:

Offer quiet, low-stimulation waiting spaces.

Reduce fluorescent lighting where possible.

Ask before touching and explain what you're doing step by step.

Encourage noise-cancelling headphones, fidgets, sunglasses, or sensory tools during care.

Touch, light, and sound can make a neurodivergent person shut down. They need their care space to feel safe to function.

Neurodivergence can affect working memory, time awareness, planning, and emotional regulation, skills that healthcare systems often assume are in place.
Practical actions:

Give written appointment summaries or bullet-point plans.

Break down tasks into manageable chunks.

Use reminders, visual schedules, and concrete timelines.

Avoid information overload and deliver key information slowly and clearly.

Medical settings can be a maze of noise and instructions that trigger shutdowns.

Communication Preferences and Processing Time

Processing verbal information under stress is challenging for many neurodivergent people, so literal language and extra time to process questions may be required.
Practical actions:

Speak clearly and avoid metaphors or idioms.

Give time for the parent to answer; silence isn't noncompliance.

Offer communication support tools, e.g. scripts or visual aids.

Document communication preferences in the care plan.

Mental Health, RSD, and Trauma Awareness

Neurodivergent parents are more likely to have experienced trauma, discrimination, or misdiagnosis. Emotional dysregulation, burnout, and RSD increase vulnerability during pregnancy and postpartum.
Practical actions:

Ask about previous experiences with healthcare.

Frame care as collaborative, not corrective.

Normalise emotional expression and distress as valid.

Signpost ADHD, autism, and trauma-informed mental health support.

Suicide is the leading cause of maternal death in the UK, and neurodivergent women are at significantly elevated risk. Recognising distress early and offering nonjudgmental support is lifesaving.

Validate and Empower Neurodivergent Strengths

Healthcare frameworks frequently pathologise neurodivergent behaviours such as scripting, stimming, and obsessive planning as signs of anxiety or non-compliance.
Practical actions:

Ask "What helps you feel safe?" rather than "What symptoms do you have?"

Encourage use of sensory tools, scripts, and self-advocacy aids.

Respect the parent as the expert in their experience.

Recognise that neurodivergent adaptations are intelligent, not dysfunctional.

Just because someone does things differently doesn't mean they don't love or parent well. It just needs to make sense for their brain.

If you are a health professional reading this, you may be neurodivergent yourself. You're not alone. There's a peer-led Facebook support group for neurodivergent midwives and student midwives. Contact Laura@neuronatal.net to connect.

Further Information

To learn more about neurodivergence in the perinatal period and how to embed inclusive practice, you can also access the NeuroNatal Academy's CPD-accredited training programme. It covers executive function, sensory support, communication tools, and trauma-informed care for neurodivergent families. Visit https://www.neuronatal.org or contact Laura@neuronatal.net for more information.

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Supporting Neurodivergent Parents - MAMA Academy

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Neurodivergent-Inclusive Maternity Care: A Practical Guide for Professionals Why This Matters Neurodivergent individuals, including those with ADHD, autism, dyslexia, dyspraxia, or sensory processing differences, experience pregnancy, birth, and early parenthood through a unique cognitive and sensory lens. Yet most maternity care pathways are built around neurotypical expectations, leading to unmet needs, increased distress, and poorer [...]

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Autistic women’s experiences of the antenatal, intrapartum and early postnatal periods - British Journal of Midwifery

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The PICO mnemonic (Stern et al, 2014) was used to identify key words and develop the research question: what can midwives in England learn from studies exploring the experiences of autistic women in the antenatal, intrapartum and early postnatal periods? A search strategy using the key words and synonyms, with Boolean operators and syntax, was applied to seven electronic databases, which were systematically searched:.