Raising standards of care blog: December 2023
Helen puts her voice at the heart of work to raise standards of care
Helen Zollinger was invited on to a group set up by Healthcare Improvement Scotland to develop national standards for adult and child congenital heart disease (CHD). The East Lothian mum was keen to share her family’s experiences of CHD after her son was diagnosed with a hole in his heart during a pregnancy scan. The CHD standards, developed by Healthcare Improvement Scotland, aim to ensure that consistently high levels of care and services are offered to all patients and their carers.
Until I became pregnant with my first child, Woody, I had been lucky enough not to have needed much from the healthcare system. But everything changed at my 20 week scan, when my unborn baby was diagnosed with a congenital heart defect. It was a complete and utter shock.
“Life changed and we had an entirely new landscape to navigate, punctuated with anxiety and trauma.”
All of a sudden, my husband Stewart and I had to come to terms with the prospect of our baby having open heart surgery, and many other medical emergencies and interventions in his early life. Life changed and we had an entirely new landscape to navigate, punctuated with anxiety and trauma. Against this backdrop, I’m not ashamed to say that my mental health suffered in early parenthood. Woody was not thriving as they expected he would and sometimes, I was unable to see clearly and have confidence in myself to advocate for him.
Diagnosis and the way ahead
We live in Musselburgh in East Lothian and at the time of Woody’s birth in 2018, there was no cardiac nurse specialist in the Lothians. All our contact was via our cardiac consultant and, aside from him, there was nowhere to go if we had a concern or a question about Woody’s heart.
It was only once we were admitted to the cardiac ward at the children’s hospital in Glasgow, the country’s specialist paediatric cardiac unit, that I realised how different it was. In Glasgow, there was a team of cardiac nurse specialists and access to a clinical psychologist along with regular peer support groups – nothing like that existed back in Edinburgh.
“The level of support was variable dependent on where you lived in Scotland and this seemed wrong to me.”
Thanks to the incredible cardiac team in Glasgow, Woody, who had been diagnosed with a heart condition called Tetralogy of Fallot, stabilised in 2019. At this point, I wanted to understand why the level of support differed across Scotland. I had a meeting with some key members of the cardiac team in Glasgow, including ward staff, consultants and nurse specialists.
Understanding the system
The staff explained to me that the structure for cardiology care is essentially two tier in Scotland – national and local. The national specialist base is in Glasgow and deals with all surgical and other interventions, whereas the local service covers all outpatient and community care. The national and local services operate separately therefore, what is accessible when you are in Glasgow, can drop off when you go to other parts of the country.
I found this massively problematic for two reasons. The first being that everything myself, my husband and Woody were able to access in Glasgow, in terms of support, fell away when we were discharged. Secondly, the level of support was variable dependent on where in Scotland you lived and this seemed wrong to me.
Making my voice heard
After this meeting in Glasgow, it was suggested that I join the group that would be developing national standards for adult and paediatric CHD care in Scotland. They were looking for some input from a parent of a child with a CHD and thought I might be able to contribute. I jumped at the chance, and before long, I was sitting round a table in the offices of Healthcare Improvement Scotland with cardiac consultants, nurses and paediatricians from all over Scotland. It was a little daunting at first – I had a lot to learn both about the process of drawing up new standards, but also about the technical aspects and jargon of the NHS. However, the fact that the standards meant exactly that – laying out new standards of the highest care that should cover the whole country – meant I knew from the start I wanted to be involved.
“There is a huge community of parents of children with CHDs in Scotland and they were able to be given a voice in the standards during the consultation period.”
Having said that, I was included from the start, and asked for my opinion at every stage. This process was complicated but would ultimately set the framework for the future of what young patients like Woody, and their families could expect in terms of care, communication and support from the point of diagnosis. For the first time, they would have a point of reference for what they are entitled to and each NHS board would know what they are expected to provide.
I chose to focus on mental health and pregnancy/obstetric care and was able to give a voice to parents of children with a CHD, using my own experience, as well as stories that other parents have shared with me.
Hope for what lies ahead
There is a huge community of parents of children with CHDs in Scotland and I was able to connect HIS with these parents so they had an opportunity to add their own thoughts and experiences to the draft standards during the consultation period.
Approximately one in every 125 babies born in Scotland has a congenital heart defect. CHDs are not going away, and with every CHD comes possible surgical intervention, anxiety, uncertainty and in some cases, life changing outcomes. I am proud to have been able to add a voice from outside of the healthcare system, from a parent who had no idea how the system worked, but knew that something needed to improve.
With publication of the standards, I’m really hopeful that across Scotland every family of a child diagnosed with a CHD will have access to consistent levels of care and support.
Helen Zollinger lives with her husband Stewart and their two children Woody (5) and Bobbie (3) in East Lothian.
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