More than one in three bereaved parents said they received poor care during pregnancy, new research reveals.

Twins Trust, which works with families of twins, triplets or more, spoke to 250 bereaved parents, including those who had recently lost a baby and others whose babies died more than 20 years ago.

Bereavement Care Report

The charity’s Bereavement Support Service, led by Sharon Darke, Bereavement Support Group Coordinator, wanted to understand more about bereavement care in the UK during and after the death of a twin, triplet or more.

The research was carried out over one month and looked at the care provided by hospitals and health professionals across the country.

Respondents spoke honestly about their experiences and the standard of care they expected to receive.

While many mentioned examples of exemplary care, others noted that simple procedures were not happening.

More than 50% of parents said they were not seen in a twins’ clinic, while only 60% received counselling after loss.

The research found a huge gap between what parents wanted and expected in terms of aftercare and the support that was provided.

Hayley Perry lost her twin son, Aubrey, at 20 weeks during lockdown in October 2020.

During her pregnancy she said she encountered insensitive medical staff and has regrets over the missed chances where she expected better care when her son died. Hayley praised the care she received from her local midwife but says some of the hospital care she had was “extremely poor and insensitive”. She says she had no aftercare or support following Aubrey’s death but was grateful to her midwife for stepping in and providing support when opportunities were missed by hospital staff. 

Speaking about her birth, Hayley said: “If I look back on it now I feel angry and I have a lot of regret about partly what I should have done and I should have been stronger. I feel let down. Having had two children before I have had really good experiences.”

Hayley said once the family returned home with Aubrey’s twin, daughter Orlaith, no more support was offered.

“My midwife was really helpful. She was the person I talked to most about what I was worried about. I came home from hospital with nothing. She gave me a memory box.”

Facing appointments on her own and no after care or support after her loss, Hayley turned to Twins Trust for bereavement support. She found other parents who had sadly faced situations similar to hers and was able to speak with others in a safe space. “It has been a great source of comfort and information. It's been so good to speak to people who completely understand,” she said.

Shauna Leven, Chief Executive Officer of Twins Trust, said: “While we are pleased to see examples of exemplary care, we continue to hear of parents who are not receiving the high standard of care that is expected.

“We will continue to work and engage with NHS Trusts across the country to improve bereavement care for all families of multiples.”

Commenting on the report, Surabhi Nanda, Consultant in Maternal Fetal Medicine, said: “The report highlights the crucial role played by health professionals at a devastating time for families experiencing the loss of one or more of their twins, triplets or more. Whereas some members of our multiples community acknowledged the outstanding care that they received in their pregnancy journey, it is evident that the quality and accessibility of care for multiple pregnancy (and in particular bereavement and follow-up care) is far from ideal.  

“The report also reinforces the basic message that NHS Trusts must have in place specialist multiple pregnancy antenatal clinics to accommodate women with multifetal pregnancies. They must have a dedicated consultant and specialist (midwifery and multidisciplinary) staffing. These recommendations are supported by the NICE guideline (NG137) on twin and triplet pregnancy (2019), MBRRACE confidential enquiry into perinatal deaths in twin pregnancies (2021), and more recently the Ockenden report (2022).

“Moreover, the Ockenden report has called for enhanced bereavement support in the maternity services to include a seven-day service, and our report demonstrates the value of dedicated bereavement support. 

“I call on all NHS Trusts to ensure that they're providing at least this level of care. Twins Trust would be delighted to work with the engaging Trusts to help them achieve this standard. I am humbled to work with the Twins Trust Maternity Engagement and Bereavement Support Groups.”

You can read the report here.