It’s been a year! In June 2018, the Scottish Cot Death Trust hosted the International Conference on Stillbirth, SIDS and Baby Survival.
Over three days, #BabySurvival18 brought together professionals from a range of agencies and disciplines who shared research, knowledge, and best practice in their respective areas. They were also joined at the conference by bereaved family members to exploring how bereavement services can improve.
Lynsay, our Executive Director reflects on the event and the legacy left for the delegates and our charity.
What is your most vivid memory of the conference?
I have two strong memories imprinted among the many happy memories.. One is of looking out at the audience during the opening welcome and realising that so many different professionals and bereaved parents from 39 countries felt it important enough to come together to discuss infant death. The passion and purpose in the audience was tangible. The fact that I had played a key role in bringing them together was special!
The second was emerging from Glasgow Cathedral after the remembrance ceremony on the evening of the second day. 250 people had gathered to remember all the babies no longer here. We had a moving and uplifting ceremony attended by bereaved parents and those supporting them from all over the world. We left to find a beautiful rainbow directly above the Cathedral. It is hard to put into words what the reaction of those who saw it was. It was quite simply meant to be and a sign of comfort and hope to everyone who was there to see it.
You will remember last June was a time of amazing weather in Scotland. For those four days the sun bounced off the pavements in Glasgow and delegates enjoyed the one type of weather we had not told them to prepare for! During the ceremony it must have rained but we were not aware of it. I did take a photograph but it just didn’t capture the feelings it evoked.
What was the biggest challenge you faced when organising it?
The programme covered various topics and themes – stillbirth, explained and unexplained SUDI, exploring pathology, public health messaging, and bereavement care and care from other agencies apart from healthcare.
This meant providing everyone with an opportunity to share their work. Developing the programme for the conference was without doubt a challenge. Ensuring delegates (many of whom had travelled far and at significant expense) were able to hear presentations most relevant to their background. Providing this range of choice was not easy but somehow we managed to programme three days with multiple concurrent meetings all themed to cover certain topics. This meant that delegates could pick and choose what best suited them.
How important was it to open the conference to parents?
The ISPID and ISA joint conference first came about because bereaved parents wanted a forum to talk about why babies were dying, what could be done to prevent it, and to learn from those who had experienced it. The reason the Scottish Cot Death Trust exists is because of those families living without their child. The same is true of many of the other bereavement organisations who were represented at the conference. Without the voice of parents, how do we know if we are doing things well or not. They tell us what is important to them and what we could change to improve services to bereaved parents across the world.
What did you envisage as the key take away thought for delegates?
Whilst it is great to meet together once every two years to learn from one another, without on-going collaboration and progression of projects in between time, it would take too long to effect any useful change. These conferences allow interested sub-groups to meet face to face where otherwise they cannot and to showcase what they have been working on over two years. As long as we are all continually working towards our goal and are prepared to work collaboratively then we will bring about change.
What is the lasting legacy of the conference for SCDT?
Globally, it is the links the charity has made with others striving towards the same goal of reducing infant mortality from sudden and unexpected death. Here in Scotland more people know about the education the Scottish Cot Death Trust provides to many agencies not just healthcare and that professionals in contact with bereaved families know about its bespoke bereavement support and either signpost families to these services or refer them directly. Our referral rate has increased by just over 20% since the conference. Knowing that families who want support are able to access it means a lot. We never want to think of people struggling after the death of their child and not being made aware of what is available to help them, if they want it.
It has given us increased confidence that as a small charity with a low annual income and a small staff team, we can make a big difference. The Scottish Cot Death Trust has often been challenged because it is a small charity but because of the services provided across the whole of Scotland and the way it delivers services in the community, many people assume it is a much larger organisation with more funding than is the case.
I think the charity has always punched above its weight but the conference has allowed it to move into another arena in which to promote its messages and work. Its visibility is increased and this may help with future funders who will more easily recognise what we provide.
How beneficial was it for the charity to commit to a huge task?
There were times during the planning where we did begin to wonder….
As the conference drew nearer and the profile of the charity was raised both here in the UK and within other countries across the world there were opportunities to remind people that one of our charitable aims is to fund medical research. Nowadays much of the research conducted into SUDI is part funded by several groups often from different countries, so developing closer links is really important. I think hosting the event allowed people to see that the charity assumes a responsibility to drive change in research, education and bereavement care. We are not content to sit back and provide the same services year in year out without taking stock and asking ourselves if we are doing things in the most effective and efficient way. We want to learn and keep moving forward.
Since 1985 Scottish Cot Death Trust has contributed over £3.2 million towards funding. Please get in touch if you would like to discuss a research proposal, or visit the Research section of our website.