Looking back can now be renamed as the trendy ‘reflective practice’ so how do I reflect on my time as a medical adviser to SOFT UK? 

My first contact with SOFT was back in the 1980’s in Leicester when a clinical geneticist colleague, Dr Ian Young,  asked for my help because he was meeting parents who had a baby diagnosed with Trisomy 13 or 18. His role was to explain chromosomes and what is meant by trisomy and to share what was known about the chances of the couple having any future pregnancy affected in the same way. As a very kind and dedicated doctor he was concerned that one couple after another told him they had been informed that their baby’s condition was ‘incompatible with life’ and they were advised to take their baby home to die very soon. When the baby did not die the parents were left confused, anxious and fearful – what should he tell them to do? And so I met my first families caring for young babies with Edward’s and Patau’s syndrome. I had been taught the same facts as the obstetricians and midwives and paediatricians who gave parents the hopeless prognosis, textbooks were adamant that these babies lived for hours or days at most with the long list of associated congenital abnormalities as the explanation for medical interventions being ‘futile’. 

Parents told a different story – while the facts about chromosomes could not be changed, both the way those facts were shared was unnecessarily hurtful as well as inaccurate. Added to the shock, sadness and confusion was anger at how they had been treated and what felt like the dismissal for their child as a non- person. Much as I might have hoped to do so, I realised I could not instantly change the world or even maternity services but I did believe that my paediatrician colleagues were kind and caring doctors like me who tried not be insensitive or to upset parents. So I wrote to the BPA  ( the British Paediatric Association that became the Royal College of Paediatrics and Child Health) asking that every paediatrician was sent my letter explaining the hurt that parents might feel when the ‘incompatible with life‘ words were used and the need to recognise the uncertainty of prognosis for survival. In accepting the reality of complex disabilities there was also a need to be prepared to support the families of surviving babies. 

So began my association with Christine and Jenny at SOFT UK. We learnt together from one another and from the families who were in touch with each other to share expertise and find how we could help others caring for the very special babies with T13 and 18 who were determined to live. 

The next lesson was how much the medical profession should learn from the experts in how to express complex or distressing information in language that most people can understand – avoiding medical jargon. The SOFT UK information booklets  - Your Unborn baby and the rest are textbooks in miniature and well deserved the awards they received. My role was to endorse the content and promote their use by health professionals, to ensure they were available in maternity units and, over the years, to keep repeating these activities for the next thirty years. When the need was recognised for bereavement teams for maternity units SOFT UK again provided a role model for health professionals needing to know how to offer the care that could help a woman and her family experience the loss of their child in whatever way could help them grieve. 

As the years passed by attitudes have changed but sadly more slowly than I had hoped and expected. We gathered many supporters from health professionals around the country and my role varied from offering parents attending antenatal clinics or finding themselves in a Neonatal Intensive Care Unit the reassurance that they had the right to information and choices that were right for them as a family. Often it seemed to help if I contacted their medical team to suggest they used the SOFT UK resources. A real boost to my confidence was listening to a radio programme where a consultant obstetrician described his change of approach to antenatal detection of a pregnancy affected by trisomy when he realised how differently each woman or couple might wish to choose the option that was right for them as parents. It still upsets me to think that lack of awareness can limit the options that parents are offered. Again I knew I could rely on the SOFT UK information being factual and unbiased and the support inclusive with an understanding that each parent and couple is unique and they all have the right to make their own choices 

When I retired my local paediatric team asked me to give a teaching session ‘things I seemed to know that are not taught about ‘. This was my chance to share what I have learnt from support groups. SOFT UK was an obvious model and I was pleased to describe to the work of the great Scotland SOFT group and to confirm everyone knew of the booklets and website and helpline for parents. I have a list of support groups that have helped me in my work as well as contact with its directory and helpline for any parent, carer or professional seeking information about a child’s condition or diagnosis. Just like parents, the health professionals need to know how to find reliable, up to date information that is clear and makes sense to every reader. I am proud to know SOFT has maintained this credibility throughout its existence and is still very much ‘Compatible with life’ 

With advances in possible treatments and survival of children with Trisomies into childhood and now even to young adulthood we continue to learn together from shared experience. With these advances came a new set of questions and a need to consider medical ethics that involve surgeons, anaesthetists and specialists intensive care and in palliative care. SOFT UK has grown and adapted to the changes in clinical advances and in society at large. For me this has been a most rewarding  experience and has made me a better doctor and offered me the privilege to meet so may wonderful families and to make precious friendships that have continued after handing over the baton to the next medical advisers with all my very best wishes.