Dr Susan Hill’s dedication to the children under her care at Great Ormond Street Hospital is nothing short of inspiring. Below is a LinkedIn post I shared, detailing her innovative approach to patient care and collaboration with families and medical staff.
“I worry about these children” she told me, and I could tell that she worried. 35 children with intestinal failure under the care of Dr Susan Hill at Great Ormond Street Hospital for Children NHS Foundation Trust. Each had a different rare reason for not eating through the mouth, only a tube to the heart.
In an emergency, the mother usually knew what to do. But doctors rarely listened. They would fax and wait for Susan’s instructions. The right treatment was later than if they listened to the mother. Four years later I met the CEO of a hospital where a child had died waiting. He was still haunted by subsequent proof that the mother had correctly told the doctors what to do.
Susan wanted the family to have her instructions through Patients Know Best. That way the mother could defend her child in the emergency room, showing Susan’s instructions under GOSH’s logo. My mother used to do that for me, carrying paper letters from GOSH. I knew Susan’s approach would work.
Susan collaborated brilliantly with the parents. After sending the first five letters to five families, she called me to say that one mother had corrected her. “I know my letters have errors, but no one corrected me before. What else can I send?” She knew the more she sent the faster the fix
Susan also collaborated with her nurses. They dreaded the 8 am phone scramble as parents from all over the country called. Mothers told me they stayed up all night, unable to sleep until they knew the nurse knew. For the nurses, waste added to stress. They would call a mum back, reach voicemail. When speaking, the mum might be driving as she listened.
The nurses soon saw benefits. “It takes less time to message than to call” they reported. And they could be certain the family had the message written, accurate and complete. Families would reuse these messages in emergencies with local doctors.
Susan pioneered collaborating with other hospitals. After 3 years, one of the children using PKB was old enough to receive treatment from Dr Simon Gabe. She invited him to access the patient’s record. He saw the patient’s past and his future. The Guardian covered this handover:
Above all she collaborated with the children. She wanted them to learn to look after themselves. Sean used to come into her room – grumpy as I used to be as a teenager – resentful of illness and resentful of reminders. With Patients Know Best, she was entering his phone. He was in control, he would message and she would respond. His attitude changed, his health improved. That’s all she cared about.
You can listen to Susan, and to Sean, on this BBC Radio 4 interview:
CEO blog at Patients know best 