Maternity and Neonatal Review update - 28th August 2024

You may be aware of social media concerns about the progress being made by the independent review of our Maternity and Neonatal services. We hope the following information is helpful.

The Family and Community Voices Steering Group 

This group has not yet met in its full substantive form.  The emerging function of this group is to collectively develop a broad variety of engagement methods that will result in direct contact with as many families as possible but to also try to avoid replicating with stakeholders, such as Llais (the independent patient advocate organisation for Wales), where families have already provided their individual accounts of the care they received.  The group will be tasked to design and assure these approaches; by early consensus of the group it will be co-chaired by family representatives who will be identified by Llais. Go here to visit the Llais website and find out more about them.

A meeting about the work of the group was held on Friday 23 August and this has been subject to significant misrepresentation on social media/media platforms. This week, the Independent Review team will include further detail on this group on its website but it is important to note that Llais is a key part of this group and contributed fully to the discussions during Friday’s meeting. Onward communications between the review team and Llais will now be enhanced for the duration of the review.

Engagement with families

Families and communities are already being engaged in the review via a variety of means, including:

• Open comments were invited on the Terms of Reference with changes made as a result of feedback
• Llais’ survey of users of the maternity and neonatal services
• Ongoing discussions and correspondence between individual families and Llais
• Direct contact via the review’s new independent website and dedicated email address – by their nature, these contacts are confidential and we cannot elaborate on them
• The review has also engaged with AVMA (Action Against Medical Accidents) and Maternity Voices in order to draw on their in-depth knowledge of service user perspectives – it will continue to do so

A critical point to note around the approach is that wherever possible, the emphasis will be on direct contact with individual families.  While there will be some occasions where multiple families or groups of families might be engaged at the same time e.g. via surveys, meetings or workshops, the most meaningful engagement will be that conducted on an individual basis.  Meaningful engagement through direct contact with individual families will help avoid scenarios where some voices are not heard.  As well as the engagement lead for the Independent Review, Llais is also key to delivering this engagement activity.

Clinical Review Team – issuing of letters to families whose cases are to be reviewed

The first tranche of review letters were sent out by the Independent Review last week to the individuals and families involved in 2022 cases.   This was done sensitively with a covering letter explaining why they were being contacted with a separate letter included within a separate sealed envelope.  The covering letter acknowledged that it might be upsetting to be contacted and suggested that individuals only open the second, sealed envelope when they felt ready and able to.  The second letter outlined in detail the process and made it clear how to contact the review should they need any form of support.

Further tranches of letters will be sent out systematically over the coming weeks as the review works through the cases it will clinically review.  It is not the case as has been suggested on social media that it is only one year being reviewed – the review is looking at:

• Clinical review using MBRRACE data – 2020, 2021 and 2022
• Data analysis and desktop review of cases plus user experience information and feedback from 2019 onwards (full five year period)
• Full and open ended self-referral process

The above highlights the inclusive approach being adopted.

Psychological and emotional support

In terms of bereavement and emotional / psychological support, we can confirm that this is currently being put in place to support those currently being contacted and those who self-refer (see below).

We are seeking submissions from appropriate organisations who will be able to provide the support on an independent basis and the means of accessing this support will be shared with individuals as soon as possible.  The letters sent out last week highlighted that support would be made available and an email address was included so that individuals could request access to that support.  Once more, where we receive feedback regarding the support being made available, we will act on it and seek to continuously evolve and improve the service in conjunction with families accessing it.

Self-referral

The Independent Review will also be opening up a self-referral process shortly for anybody who believes their case should be reviewed.  This is being done with the aim of making it clear that the review will be inclusive rather than exclusive. 

The self-referral process will be made clear on the website and wider communications regarding self-referral will be done when it is opened and frequently thereafter. Go here to access the Independent Review website.

There will be no time limit for self-referral (i.e. families could self-refer even if their case preceded 2019) although it is clear that the more recent cases will have greater direct relevance to the current status of the services.  Notwithstanding that, we recognise how important it is to give individuals an opportunity to revisit their care when they feel it necessary and appropriate and we are committed to enabling them to do that.  

The review has appointed two new specialist midwives to triage self-referrals and support with coordination and communication – they will work independently of the Health Board.

Governance

While the Health Board has commissioned the review, it has been established in a way that safeguards its independence.

A comprehensive Governance pack has been developed to outline how this will be achieved.  A copy of the Governance pack can be accessed on the Independent Review website. 

The Oversight Panel is an important part of the Governance that ensures the independence of the review.  Its Chair, Dr Denise Chaffer, will continue in the role on an interim basis.  We believe the priority at present is to allow the review to progress rather than start a new recruitment process that might delay the work of the Oversight Panel and create an unwelcome hiatus.

The cost of the review has been criticised on social media but the hard truth is that a proper and fully independent review such as the one we have commissioned is costly.  The priority now is for us to make sure that the review is able to get on with its job so that the money spent ends up being an investment in the quality of care provided by our maternity and neonatal services.

And finally on the issue of Governance, there are misleading suggestions that the Terms of Reference have been updated to reduce the scope.  That is not the case and the truth is in fact the opposite as has already been outlined above.  Indeed, the timescale for self-referral has now been opened up completely so as not to restrict the voices of women and families who feel they have never had resolution to their concerns.

Keeping you updated

Now that the Independent Review is fully up and running with cases being reviewed and engagement underway, will  be sharing regular updates on a wider basis via our dedicated web pages. 

The Independent Review itself will also be regularly updating on progress, publishing updates on its website. Go here to access the Independent Review website.  

The Independent Review’s website contains a wealth of information relating to the review, including the detailed governance pack referred to earlier as well as a latest news section and practical information on how to contact the review and how to access support.  Individuals are already making use of the contact details and are actively engaging with the review.