Sands is calling for an end to delays in post-mortem results being given to parents, following the death of their baby.
A shortage of specialist doctors, who carry out post-mortems on babies that die in England, is having a devastating impact on bereaved parents.
Our 2023 survey of bereaved parents found that the average time it takes for parents to receive their babies’ post-mortem results has significantly worsened over time.
More than one in five (21%) of parents surveyed by Sands reported waiting up to six months or more for the results of their baby’s post-mortem.
Not only has this waiting time doubled for parents who had losses within the last three years, compared to those that happened more than three years ago, but the proportion of parents waiting six months or more has trebled.
“The current shortage of perinatal pathologists is having a devastating impact on parents. At Sands we hear regularly about the heartbreak caused by lengthy delays, by poor communication and about a lack of choice or control.
“In recent years mutual aid between pathology centres has reduced the impact of the shortage of pathologists, but that approach is increasingly breaking down as overburdened centres have dwindling capacity to pick up cases beyond their own area.
“No parent should ever have to wait more than six-months for their baby's post-mortem to be undertaken and the results communicated to them. Ideally, most parents should be receiving results within three-months.
“We urge the Government to work with NHS England to close this agonising gap between a baby dying and parents finding out why it happened. This means the Government identifying resources and prioritising the recruitment of perinatal pathologists as part of the NHS workforce plan.”
- Clea Harmer, Sands’ Chief Executive
Bereaved parents reveal agony of waiting for post-mortem results
Almost all parents surveyed by Sands, who consented to a post-mortem, spoke about long waiting times and the significant impact that has had on them. For some parents, as well as the impact on their mental health and grief journey, the delay meant they could not plan to try for another child.
Laurellie and her husband, Gareth, lost their little girl at 18 weeks, having gone into spontaneous labour on the 17 September 2022, turning their world upside down.
She told Sands that trying to navigate this trauma, grief and loss was the hardest thing either of them has ever been through.
“We decided an hour after I gave birth to our perfect, tiny little girl, that we needed to know why this had happened, and opted for a full post-mortem investigation. We both understood that quite often, no clear reasons can be found, however, we both knew we would want some assurances if we were to consider trying again. At the time, we were advised that the results tend to take around three months.
“It took us a day before 40 weeks following our loss for us to finally get our answers, that there appeared to be a possible infection in a swab taken, but otherwise there was nothing clear on why we lost our baby, who appeared healthy and growing as she should have been for her gestation.
“Results delays are a postcode lottery, with those in certain areas getting them within the three months, others still waiting for results over 12 months from their loss. The inequity is so impactful for those waiting and waiting, their lives in limbo, like ours was.”
- Laurellie, bereaved mother
Sands’ survey of bereaved parents is filled with the voices of other families that make clear why waiting times for post-mortem results must be reduced.
However, when parents do get the longed for results it can make a big difference to their wellbeing. Parents who report having a good experience usually say this is because an individual clinician has gone out of their way to ‘connect the dots’ and make sure the system works.
“I am so glad that we were given the post-mortem to help us understand as much as we could about the death of our baby. I felt like I was receiving care from experts which I really appreciate. The only problem is that it took so long.”
Sands working to fix failures in the post-mortem system
The critical shortage of perinatal pathologists across the UK has been building for many years, leading to the current crisis in the delivery of perinatal post-mortem services.
The stress on pathology services is leading to gaps in systems and processes in many hospitals and this causes intensely distressing experiences for parents.
Issues we've identified include parents not getting the correct information, babies being sent for post-mortem when there was no consent (or vice versa), or babies’ bodies being ‘forgotten’ or tissue samples lost, meaning that pathology investigations could not be done as the samples were then too old.
Sands has been feeding into NHS England initiatives, including plans for service re-organisation, but the charity is increasingly concerned that user needs are not yet sufficiently prioritised and that the prospect of a service fit for purpose remains far off.
We also act as the secretariat for the All-Party Parliamentary Group on Baby Loss, and Sands has been working with MPs to raise awareness of this issue.
“The annual Baby Loss Awareness Week Parliamentary debate is an opportunity for MPs from all parties to speak out on behalf of bereaved parents in their constituencies. There is much work to be done to improve maternity care, save more babies’ lives and provide better bereavement support for parents. This is an issue that has affected far too many people both here in Shropshire and across the country.
“The current situation in perinatal pathology, with growing numbers of parents being left in limbo and not receiving post-mortem results following the death of their baby, cannot be left unchallenged. It is essential that a proper recruitment plan is in place to ensure more perinatal pathologists are working in the NHS, and resources made available, so no parent is left to wait six-months to receive a post-mortem report following the death of their baby.”
- Helen Morgan MP, co-chair APPG for Baby Loss
“Losing a baby is a traumatic experience, and we must do all we can to ensure that bereaved parents receive timely, compassionate support following their loss. This must include reports following perinatal post-mortems, so parents can better understand what happened to their baby, be able to grieve, and make informed decisions about potential future pregnancies. Together with my fellow MPs who form the All Party Parliamentary Group for Baby Loss, I want to see a commitment from Government which recognises that no parent should ever have to wait more than six-months for post-mortem results for their baby.”
- Cherilyn Mackrory MP, co-chair APPG for Baby Loss
We are asking MPs to raise this issue at the Baby Loss Awareness Week annual Parliamentary debate taking place on the 19 October. You can help by asking your MP to attend this debate.