Arriving at the Holiday Inn to register for the Dying Matters Awareness Week Launch event: #BigConversation, I was delighted to find an ample supply of hot coffee (real, not instant) and croissants. I copped a squat in the reception area to people-watch and wake up (I'd made an unnecessarily early trek to the Portland Street venue so had plenty of time to kill).
The (equally early) delegates streamed through the doors, a diverse flood of men and women, variously attired in suits, shawls, jeans and rainbow jumpers. Admittedly most were 'middle' aged, but a few young 'uns and a smattering of elders also graced the multiple round tables. The room was set up cabaret style, with 8 seats to a table. I scanned the room, many of the tables were already full but I spied one, towards the front, second row, with a spare seat. A table of twinkly-eyed women, one of whom had blue hair, extravagant earrings and a wicked smile. Yep, I thought, that spare seat next to her, that's MINE!
How well I chose. The delegates at the table included palliative care nurses, 2 GPs and a Hospice PR officer, all of whom reacted with delight to my introduction as 'a film producer' and seemed enthused and intrigued by Still Loved, agreeing that it could help them, or their friend, their colleague or sister or great uncle. Throughout the event, as ever, everyone I spoke to had some experience of stillbirth which they felt palpable relief at being encouraged to share. As ever, talking about our film was the first opportunity they had had to share it, frankly and unapologetically, with someone who was unafraid to hear them.
The talks we heard were fascinating, illuminating and inspiring by turns.
I had never really thought about 'digital legacy' nor what I might leave behind on Social media when I die, I hadn't realised how important it is to share your passwords with at least one other trusted person- what If I die and no-one can access my phone, facebook or email accounts to let my networks know of my demise and then to shut my accounts down so they can't be hacked and used callously to advertise payday loans or some other immoral product or 'service'?
It occurred to me that stillborn babies may also have a digital legacy, created by their parents during pregnancy. Parents who share scans, blogs and hopeful status updates feather the online nest for their children and create a digital memory box which they may not realise exists in the grief-sodden aftermath of baby loss.
There were brilliant talks from 'alternative' funeral directors, the founder of Death Cafe and two women from LOROS who have toured with a 'Before I Die' wall, getting the public to be public about their bucket list, in public places.
During the networking sessions and lunch time I connected with many fascinating and enthusiastic care providers, hospice workers, funeral directors and the head of ceremonies from the humanist society. Most notable was, perhaps, fellow filmmaker and bereaved parent, Jane Harris who is making a film about her son Josh (who died at the age of 22). We met at lunch and shared stories about the experience of making a film about grieving parents and seeing 'the wall' come down on the faces of those who are unwilling or too terrified to talk or listen about this subject.
The (equally early) delegates streamed through the doors, a diverse flood of men and women, variously attired in suits, shawls, jeans and rainbow jumpers. Admittedly most were 'middle' aged, but a few young 'uns and a smattering of elders also graced the multiple round tables. The room was set up cabaret style, with 8 seats to a table. I scanned the room, many of the tables were already full but I spied one, towards the front, second row, with a spare seat. A table of twinkly-eyed women, one of whom had blue hair, extravagant earrings and a wicked smile. Yep, I thought, that spare seat next to her, that's MINE!
How well I chose. The delegates at the table included palliative care nurses, 2 GPs and a Hospice PR officer, all of whom reacted with delight to my introduction as 'a film producer' and seemed enthused and intrigued by Still Loved, agreeing that it could help them, or their friend, their colleague or sister or great uncle. Throughout the event, as ever, everyone I spoke to had some experience of stillbirth which they felt palpable relief at being encouraged to share. As ever, talking about our film was the first opportunity they had had to share it, frankly and unapologetically, with someone who was unafraid to hear them.
The talks we heard were fascinating, illuminating and inspiring by turns.
I had never really thought about 'digital legacy' nor what I might leave behind on Social media when I die, I hadn't realised how important it is to share your passwords with at least one other trusted person- what If I die and no-one can access my phone, facebook or email accounts to let my networks know of my demise and then to shut my accounts down so they can't be hacked and used callously to advertise payday loans or some other immoral product or 'service'?
It occurred to me that stillborn babies may also have a digital legacy, created by their parents during pregnancy. Parents who share scans, blogs and hopeful status updates feather the online nest for their children and create a digital memory box which they may not realise exists in the grief-sodden aftermath of baby loss.
There were brilliant talks from 'alternative' funeral directors, the founder of Death Cafe and two women from LOROS who have toured with a 'Before I Die' wall, getting the public to be public about their bucket list, in public places.
During the networking sessions and lunch time I connected with many fascinating and enthusiastic care providers, hospice workers, funeral directors and the head of ceremonies from the humanist society. Most notable was, perhaps, fellow filmmaker and bereaved parent, Jane Harris who is making a film about her son Josh (who died at the age of 22). We met at lunch and shared stories about the experience of making a film about grieving parents and seeing 'the wall' come down on the faces of those who are unwilling or too terrified to talk or listen about this subject.
Jane gave an inspiring and moving talk about the ways in which losing Josh had changed her life, had enriched her work and understanding of humanity and had influenced her 'Carpe Diem' attitude. Whilst acknowledging her grief and the devastating loss she feels, she also allowed space to talk about the positive changes wrought in her life, the impact on Josh's father and the way in which her relationship with her son continues to develop, even in his absence.
Most profound to me was her comments on losing friends after losing Josh:
"People are scared because they don't know what to say. They should just speak to us, tell us they don't know what to say, I'd much rather that than being ignored or avoided."
The conference ended in the late afternoon and as people slowly left, I could see that many new alliances had been formed, everyone seemed energised and inspired by the talks and bubbling with possibilities for events to be planned around the Dying Matters Awareness Week: 9th-15th May 2016
Most profound to me was her comments on losing friends after losing Josh:
"People are scared because they don't know what to say. They should just speak to us, tell us they don't know what to say, I'd much rather that than being ignored or avoided."
The conference ended in the late afternoon and as people slowly left, I could see that many new alliances had been formed, everyone seemed energised and inspired by the talks and bubbling with possibilities for events to be planned around the Dying Matters Awareness Week: 9th-15th May 2016
The next day I was in a very different setting. The stubborn sun rose slowly over a frost dusted Regents Park as I shivered my way to the Royal College of Obstetricians and Gynaecologists for the #EndStillbirths launch of The Lancet Series on preventable stillbirths, hosted by the ISA.
With a display table full of promo materials and the trailer playing on my laptop, I was lucky to be pitched next to MAMA Academy. The guests flooded in, from bereaved parents, to researchers, artists and producers to experts in Obstetrics many stopped to ask what was on my table and why, many stopped to watch the trailer and add their name to our mailing list.
With a display table full of promo materials and the trailer playing on my laptop, I was lucky to be pitched next to MAMA Academy. The guests flooded in, from bereaved parents, to researchers, artists and producers to experts in Obstetrics many stopped to ask what was on my table and why, many stopped to watch the trailer and add their name to our mailing list.
After an eloquent introduction by Dr. Alex Heazell (Our medical consultant and a leading expert on stillbirth prevention) Richard Horton , editor in chief, and other esteemed contributors to brand new The Lancet Series talked us through their research papers, revealing time after time how much more could be saved by proper preventative treatment and more in depth consultation than would be spent. I can't possibly precis the papers here, but they are definitely worth a read and you can access the twitter stream from that day to see reactions with the hashtag #endstillbirths and #EndStillbirths. The two points which seemed to umbrella the whole event were 1. The stigma is a huge part of 'the problem', it causes pain for the bereaved, discourages positive action, training and research within the international medical community and stymies advances in peri-natal care in all communities with sub sarharan Africa suffering more than the rest of the world (as ever). 2. That in addressing and attempting to prevent more stillbirths, the benefits far outweigh the costs. By taking action to prevent stillbirth, we necessarily reduce all peri natal health problems for both parents and babies, there would be less miscarriage, fewer maternal deaths, fewer cases of severe post natal depression, better familial care and bonding, fewer infant deaths, greater maternal health, greater infant health, fewer relationship breakdowns, the butterfly effect of tackling the stigma and causes of stillbirth is simply unfathomable, it's huge and purely positive and must now be made an international priority.
With a panel chaired by Richard Horton and including both bereaved parents and medical experts the central questions of the day were explored and interrogated. Stigma, the need for unity and solidarity between charities, NGOs, central government and the NHS on issues around stillbirth, prevention and bereavement care as well as the barriers to research and improvements were central themes.
With a panel chaired by Richard Horton and including both bereaved parents and medical experts the central questions of the day were explored and interrogated. Stigma, the need for unity and solidarity between charities, NGOs, central government and the NHS on issues around stillbirth, prevention and bereavement care as well as the barriers to research and improvements were central themes.
After a full few days of inspiring talks, illuminating info and introductions to many 'players' on the scene I was ready to take some time to de-brief, wind down and head home when a surprise call from Debbie summoned me to an interview on the BBC World News Channel, an opportunity to promote the film and advance the cause which I could not turn down.
They sent a taxi to cart me and my many bags of promo materials over to the broadcasting centre. After several coffees and many trowels of make up I was sent into the studio to be interviewed.
They sent a taxi to cart me and my many bags of promo materials over to the broadcasting centre. After several coffees and many trowels of make up I was sent into the studio to be interviewed.
I had been briefed via email about the questions I would be answering and had spent a couple of hours in the 'Green Room' planning my answers to these. When, on the spot in the brightly lit studio, I was asked a completely different set of questions, questions which it may have been appropriate to ask a doctor/researcher or minister- some sort of expert in international medicine, but not a filmmaker. The issue was that the journalist clearly wanted to create a scandal out of the scandalous statistics, wanted to be able to place blame or outrage at someone's door, but I was not the right candidate for this, having spent that past 3 years challenging the very stigma which feeds the scandal. It was a very tough interview for this reason and the most intelligent answer I was able to give was "...I'm not a medical researcher so I can't answer that question intelligently" I did manage to shoehorn a plug for the film in there and comment on the stigma which suppresses advances in stillbirth prevention and after care and the treatment I received from BBC staff was welcoming, reassuring and helpful. In the end I felt that my performance could have been better, but not in these circumstances.
It was a wonderful, inspiring and exhausting few days in The Smoke and I headed home on the commuter train that evening feeling very grateful.
It was a wonderful, inspiring and exhausting few days in The Smoke and I headed home on the commuter train that evening feeling very grateful.
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