The #LostInTheSystem campaign is calling on all UK governments to take urgent action to ensure all bereaved parents can access the mental health care they need, whenever they need it.
Read the Lost in the system: bereaved parents experiences of mental health care following baby loss report here.
My loss affected every part of my life. I lost friendships, I had to leave my job, family relationships continue to be strained, I am now unable to afford the private therapy.
Bereaved mother whose baby died at 37 weeks gestation
About
One of the biggest issues that bereaved parents tell us they want to campaign on is the lack of support available for their mental health following their experience.
We have spent the first half of 2025 finding out about mental health care following baby loss. We were interested in understanding what services are available, particularly through the NHS, and how helpful bereaved parents find them, what's working well and what needs to change.
To do this, we spoke with bereaved parents, healthcare professionals, heard the experiences of almost 2000 bereaved parents who completed our survey and directly asked NHS commissioners what services they provide.
We are pleased to be able to share the findings in our newly published report Lost in the system: bereaved parents experiences of mental health care following baby loss.
We want to extend a huge thank you to everyone who has already been involved in the campaign group, spoken with us or completed the survey.
Your voice is central to this report, and we couldn’t have written it without you.
Our key findings:
- 81% of bereaved parents told us they wanted psychological support after pregnancy or baby loss
- Despite this, only 1 in 6 bereaved parents were able to access specialist support through the NHS
- It’s positive that when they did, the vast majority (87%) found it helpful.
- We found evidence of a postcode lottery in the NHS mental health support available for bereaved parents with poor oversight from commissioners
- Whilst England is further ahead with implementing specialist psychological support pathways for bereaved parents, in Wales and Northern Ireland there is distinct lack of national pathways
- Additionally, even where specialist pathways exist, we found evidence that fathers, partners, those experiencing earlier gestation losses or the death of an older infant and those from more marginalised backgrounds cannot always access these services.
I was told over and over again that the lists were too long or there wasn't capacity for me to access this type of support. I was turned away from multiple organisations and all NHS options.
Mother whose baby died at 27 weeks gestation
Our calls for change
We are calling for urgent action from governments across the UK to ensure that all beavered parents can access the mental health care they need, no matter where they live or who they are.
As health is devolved, there are significant differences in the services available across England, Scotland, Wales and Northern Ireland.
This means we are calling on each government to do something slightly different.
- In England and Scotland, we are calling on governments to commit to eliminating postcode lotteries in care and issue national standards for commissioners to follow.
- In Wales, we are calling on the Welsh government to evaluate the pilot pathway in Cardiff and Vale and ensure that a specialist mental health care pathway is expanded to include all Health Boards.
- In Northern Ireland, we are calling on the government to expand perinatal mental health services to ensure they include a specialist mental health care pathway for bereaved parents.
We know that recent changes, particularly in England, are having a positive impact for some. But we need this to be replicated everywhere.
The support was good, the fact free support is available is amazing! Especially for those who don't have a lot of income.
Woman who experienced multiple losses at 8 weeks gestation
Find out more about the specific asks where you live in the UK and join us in calling on the government to take action to improve mental health care for bereaved parents.
Read our findings in detail:
Get involved:
- Share our action with friends and family
- Join the conversation online using the hashtag #LostInTheSystem
- If you have experience good or bad, of trying to access mental health services following baby loss get in touch if you would like to get more involved in the campaign.