SOFT UK was founded in 1990 by two mothers, Christine Rose and Jenny Robbins. They had discovered first-hand that there was a lack of support and information for families affected by Trisomy 13 (Patau’s syndrome), Trisomy 18 (Edwards’ syndrome) and related disorders.
SOFT UK is run by families for other families. They provide up-to-date information and support to families through all stages of the trisomy journey; through pregnancy, while caring for a child, after bereavement and beyond. In this blog, Demi Powell, SOFT UK Project Manager, writes about the support they provide to professionals working with families affected by trisomy conditions.
Parent stories can change practice
SOFT UK has worked closely with NHS England during 2017/18 supporting the introduction of Non-invasive prenatal testing (NIPT) as part of the pre-natal screening pathway. NIPT is a way of examining fetal DNA that is less invasive and lower risk than previous techniques for prenatal genetic testing. In the NHS, NIPT will be offered to women whose results from the ‘combined test’ (an ultrasound scan and blood test) show a high risk of trisomy.
Contributing to the training of healthcare professionals and improving awareness of Edwards’ and Patau’s syndrome has been a fantastic opportunity to use parent experience to positively influence clinicians’ future practice.
Evaluation of the training so far has been amazing. Some comments from healthcare professionals have been particularly powerful:
‘The parent experience presentations were very emotional and thought provoking and I will certainly change some of my practice because of them.’
‘The training has made me re-phrase the terminology I use when talking to parents about Edwards’ and Patau’s; now usinglife limiting” not “incompatible with life”.’
The parent’s perspective
One of SOFT UK’s parent Trustees, Gareth Glendinning, told us how it felt to share his very personal story as part of the training programme:
Flipping heck – what was I thinking? To volunteer to stand up in front of a room full of healthcare professionals and tell my story as a bereaved parent – why?
To provide a little context, our daughter, Phoebe, was born in March 2006 with Edwards Syndrome, otherwise known as Trisomy 18 and lived for three days in the Neonatal ICU at Leeds General Infirmary.
I used to be very reluctant to talk about her, or our experiences, in case anyone else got upset. However, with this request, I couldn’t have volunteered any more quickly. Edwards Syndrome is a little-known condition and lags well behind other conditions in awareness.
Right, I thought, time to put that right.
As the date of the first event in London approached, I began to think about what I was going to say. It became very clear that there was so much I thought I wanted to say and so little time to say it in, so I just decided to stand there with an outline in my mind and see what happened.
Talking about things brought it all back… from the smell of the hospital to the feel of Phoebe’s blanket and the sight of her bright orange Tigger in her incubator – a gift to her from our son who came to visit her the day before we turned off her life support.
The training programme was about more than that, though. The events were about getting those thoughts and feelings across to the wonderful attendees. Helping them to understand what parents are experiencing and, for example, when they might stop listening; I explained that, for me, it was when the doctor said ‘incompatible with life’.
The knowing looks, the attentive listening, the insightful questions all proved that these were people who knew what was ahead, what they would have to do and what news they may have to deliver. Some attendees, who had already been through it, were happy to share ideas and experiences which, hopefully, would evolve into informal networking and support groups.
These kind, sympathetic eyes looking at me understood that that they would have to find their own path, their own way to communicate what was happening to their patients. They knew that they will have to find different approaches because parents all react differently. From a father’s perspective, it allowed me to let people know that dads suffer too, despite how strong we try to look.
It was an exceptional experience. Being so open and emotionally honest in front of rooms full of strangers was humbling, and all I can ask is that they remember something of my story, understand that parents will need different things and that clear, empathetic communication is key.
SOFT UK is a registered charity no. 1002918 (England and Wales) | no. SC043341 (Scotland).