Bibi Bugg was one of the first members of Sands, campaigning for better bereavement care in the wake of the deaths of her twin baby boys, Peter and Paul, in 1978. In this candid and inspiring conversation with Louis Pilard, Sands’ Campaigns Officer, Bibi discusses why she started to campaign for better bereavement care, how much has changed over the years, and shares words of wisdom for more recently bereaved parents who want to make a difference. 

Bibi with her eldest son in 1980

Louis: Hi Bibi, it’s great to finally speak. I’m quite newly bereaved and I’ve been involved with Sands for just over a year. Sometimes it feels like things change so slowly in the short term. What is it like for you seeing change over decades?  

Bibi: Yes, it takes time. But it’s true – things are different compared to when we started. So much has changed. It’s wonderful to see how far Sands has come and how much more support there is for parents. 

Louis: You’ve been involved with Sands since before bereavement care for baby loss was common. When you started over 40 years ago, Sands was operating out of a living room. Can you tell me about your journey?  

Bibi: Yes, it was a different world in those days. Very difficult. My twins, Peter and Paul, died in 1978. Peter died 10 days after birth and Paul died six weeks after. Shortly after their funerals, we moved to a new town, and it was awful. Nobody knew about me or my losses, there was nobody to talk to. It was like a bad dream.  

Louis: I know it was such a long time ago – but I’m still really sorry to hear that and sorry for your losses.  

Bibi: Thank you – it was devastating. My sister knew I was lonely. She told me about an organisation that could help. I spoke to Hazelanne Lewis [Sands co-founder] on the phone and spoke over a few weeks. I went to my first support group meeting in 1979 which was in Nottingham, almost a year after the twins died.  

Louis: How was that?  

Bibi: [sighing with relief] It was fantastic. It was just amazing to meet other people who had lost babies. Wow, I thought, I’m not on my own.  

Louis: What did you do next?  

Bibi: We got to work. We did a jumble sale and raised £300 [over £2,000 in 2023 terms] and were able to buy a settee and curtains to furnish a bereavement room at Nottingham hospital. But it was too small for anyone to sleep in – just a place for parents to have a moment to themselves. That year, I gave a talk to midwives at my local hospital about bereavement care. Then I was invited to speak on the radio and was interviewed in the newspaper. Afterwards I was invited to be on the Sands committee by the founders. I spoke to different midwifery organisations about bereavement care, I was on BBC Panorama talking about neonatal death.  

Louis: What year was this?  

Bibi: 1981.  

Louis: All that in just over one year?  

Bibi: I was very busy. I was devastated. And the experience at the hospital had left me very angry. You see, back in those days they wouldn’t encourage you to see your babies if they were dying. My boys were born early and very sick. We asked the hospital to let us know if they thought our boys were about to die so that we could come and say goodbye. But they didn’t call us until the next morning after it was too late. All I have left of them is a couple of scans and their bracelets. It was very impersonal.  

Louis: That’s awful. 

Bibi: And it made me even more certain that things weren’t right. I was determined to spread the message that they weren’t treating us as they should... It wasn’t right.  

Louis: Can you tell me about any big changes that you campaigned for?  

Bibi: In 1981, I got a phone call from a lady from Derby who didn’t know where her baby was buried. I helped her by going to the council and it turned out her baby was buried in a mass grave. That’s what they did in those days. I then went to the Chief Administration Officer at Derby City Council. I told him it wasn’t right that they buried babies in mass graves. It turned out that his daughter had recently had a stillbirth – he was in total agreement with me. Very quickly, they changed the policy. They stopped doing mass graves for stillborn babies and made sure that they each got their own burial with parents involved.  

Louis: What would you say is the biggest difference between the way parents who suffer the loss of a baby are treated between now and 40 years ago?  

Bibi: When my twins died, bereavement care for baby loss was virtually non-existent. There were no bereavement rooms, no memory boxes. There was no awareness that parents needed support. All that has changed now.  

Louis: As you fought for that change, did you feel it was happening quickly or was it painfully slow? I often feel frustrated by how slow things are to change. My baby boy died a year and a half ago and even in that time I wish more would change. When you say you campaigned for a bereavement room that didn’t even have a bed, I imagine it must have felt so frustrating.  

Bibi: It was frustrating. But I always wanted more and more. [laughs] I was very busy, and a lot was happening, but I wasn’t always satisfied. Change takes a long time; it takes generations. But it’s truly a different world now. 

Louis: What other words of wisdom do you have to share for people who want to get involved?  

Bibi: Don’t work alone. Work with Sands or your local Sands group. It’s much better than working alone, which we often did at the beginning. Take your time. Take care of yourself. Find someone to do calming things with you. Do pleasant, calming activities: reading, music, walking. Otherwise, you will burn out. I didn’t let myself do those things – I had to keep myself busy to cope. But you need to pace yourself. Seek help if you need it – accept bereavement counselling.  

Louis: All great advice.  

Bibi: Change takes time. You just need to keep going. Keep working at it.