TFMR survey

Breaking the silence

The results of our recent TFMR survey with Petals and Tommy’s

Following last year’s successful campaign, our three charities launched a survey to find out more about the experience and help us plan our next steps

I felt like I didn’t deserve to grieve because I had chosen to terminate, and that my loss didn’t matter as much

A huge thank you to the more than 1300 people who took the time to share their experiences, thoughts and feelings with us. It’s vital that the voices of those who’ve had a TFMR are at the centre of everything we do together and shape our way forward.

Here’s a summary of what we learnt:

Understanding

They wouldn’t understand. I love and wanted my baby.

Many respondents felt the concept of ‘choice’ when terminating a pregnancy for medical reasons does not capture the true complexities of deciding to end a wanted pregnancy.

72% felt that TFMR was not treated the same as other types of baby loss, and people who’ve had a TFMR said they don’t always feel they ‘fit’ with other baby loss support groups because of their specific experience.

Together, we want to ensure that families who’ve experienced TFMR feel included in the pregnancy and baby loss community. 

Openness

It’s difficult to say out loud that we made a decision. I can only bring myself to say we ‘lost our baby

54% said they have only been open about their TFMR with ‘some people’. The comments suggested that this was because they feared judgement and other possible reactions, and this influenced their decision about who to tell.

We know that being able to talk about their loss can help families cope with their grief. Petals supports families across the UK with specialist counselling following baby loss and encourages anyone who is struggling to talk about their loss to reach out for support. Private online platforms like the ARC forums and Tommy’s Baby Loss Support Group are another way for parents to connect and cope, whether they want to share their own thoughts and feelings or simply take comfort in reading those of people with similar experiences.

Information

The information from ARC was invaluable I’m not sure what I would have done without their support.

The verbal information people received about their TFMR was difficult to take in at the time, and people often said they were not provided with information in a written format. Those who’d been given information resources produced by ARC found them very helpful and felt more prepared during and after the process.

We found that parents need more practical information about what to expect during and after their procedure – for example, what to bring to hospital, what the labour and delivery involves, and how their body might feel and react afterwards. They also wanted better information on their options about how they can say goodbye to their baby, make memories and take steps to plan for their baby’s funeral or commemoration.

Care

The hospital I was at were really informative and helpful when we went through our TFMR. I had a traumatic missed miscarriage at the same hospital 3 years before and didn’t feel I was told enough about that. This time I felt everything was dealt with much more empathetically.

Compassion and sensitivity are really important, because without them, people who’ve had a TFMR can often feel judged – even by the health professionals caring for them during their experience.

News about the findings wasn’t always given sensitively, and distress was caused by the use of medicalised language such as ‘fetus’ and ‘abortion drugs’.  Sometimes continuity of care was lacking and not all professionals were made aware of their situation.

Positive accounts of care often mentioned kindness, sensitivity, dignity, compassion, respect, caring and supportive staff.

Practical steps need to be taken to make sure that people having a TFMR get consistent individualized care during and beyond their pregnancy. Things like having a named contact can make a big difference.

Support 

A bereavement midwife came to see me. She helped prepare us for what was to come and made us a memory box after he was born. She is still in contact with me now as we wait for the post-mortem results.

Over 40% said that they weren’t offered any bereavement support by their hospital.

While we’re pleased that this isn’t the experience for most of those who responded, it’s   disappointing to hear that some families are still unable to access good bereavement support. This is something ARC, Petals and Tommy’s will continue to champion.

Families who’ve had a TFMR should be able to access bereavement care outlined in the National Bereavement Care Pathway. The National Bereavement Care Pathway was developed to help give all families better support after miscarriage, ectopic pregnancy, molar pregnancy, termination for medical reasons, stillbirth and neonatal death.

We’ll continue to work with our partners at Sands and the BLAW Alliance to hold the government to account on this, so the best possible bereavement care is always available to anyone going through pregnancy and baby loss.

Impact

I have been diagnosed with PTSD. Emotionally, I have found it incredibly difficult, I have often felt deeply guilty and incredibly upset.

The most notable response about feelings after TFMR was ‘sadness’, together with 80% highlighting the feeling of ‘isolation’, and 87% indicating that they felt feelings of ‘guilt’. A number of our respondents talked about longer-term mental health issues following their loss.

Life after TFMR can be very difficult, which is why we’re working with Petals and Tommy’s to support families and to keep the conversation going. No one should feel isolated by their loss.

What you’d like to see from our partnership

• Increased awareness and understanding of how common TFMR is, alongside other types of pregnancy and baby loss.
•  Better awareness and understanding of the emotional needs of TFMR parents and how those around them can better support them.
• Support for anxiety in another pregnancy, where there is fear of it happening again.
•  Sensitive media coverage and real life stories. 

Next steps 

Together with Petals and Tommy’s, we will continue our partnership to break the silence around TFMR and help lift the taboo. We will keep working together to share real life stories across all of our own communications channels, as well as asking others to provide platforms for your experiences and voices, and work together to provide information and support those who need us.

Follow us on social media to stay up to date as our campaign progresses. If you’d like to share your story please email: info@arc-uk.org