A Scots woman who was the world's youngest pacemaker patient has welcomed new standards that aim to improve the detection of heart defects in unborn babies.
Dr Liza Morton, 44, made medical history in 1978 after the device was fitted when she was just 11 days old at Yorkhill Hospital in Glasgow.
She was born with complete heart block, a serious congenital heart defect and has had 11 fitted since then.
She petitioned Holyrood for improvements back in 2012, highlighting that patients can be treated in A&E by doctors who do not have access to up-to-date information about adults with congenital heart disease (CHD) from all health board areas, which can lead to sub-standard treatment.
She claims that on one occasion she was sent away by emergency staff who did not believe her pacemaker was failing.
The new standards, agreed by Healthcare Improvement Scotland (HIS), aim to ensure that consistently high levels of care and services are offered to all patients and their carers.
A key recommendation is improvements in detection rates in unborn babies.
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They also include improved access to counselling and emergency care that is "safe and effective" and a smooth transition between paediatric and adult services.
Charities estimate that thousands of patients who had surgery as babies decades ago are missing from the system.
CHD is the most common congenital abnormality, affecting approximately 1% of babies.
A quarter of babies with heart defects require medical intervention in the first year of life and there are around 20,000 people living with CHD in Scotland.
Dr Morton, who is a counselling psychologist and lectures at Glasgow Caledonian University, was asked to represent the views of patients on a 23-strong expert standards development group set up by HIS. She also wrote a book about her journey entitled Healing Hearts and Minds.
She said: "It has been an emotional journey and I am so excited to see these standards finally published.
"They should have a very real impact and improve the lives of people with a heart condition from childhood throughout life.
“As a Counselling Psychologist and Lecturer in Applied Psychology, I am particularly delighted the standards include a specific standard on the mental health needs of this population.
“Around half of people with CHD are diagnosed with anxiety, depression or post-traumatic stress disorder in their lifetime. Serious illness during childhood is an adverse childhood experience and living with a lifelong heart condition can involve facing a range of unique life challenges."
Helen Zollinger, whose baby was born with a heart defect, was also part of the government advisory group.
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Her son Woody was diagnosed with a hole in his heart at her 20-week scan while she was pregnant.
Mrs Zollinger, who lives in Musselburgh, East Lothian, with her husband Stewart, have spent a lot of time at the cardiac ward of the Royal Hospital for Children in Glasgow, since he was born five years ago.
It was during that period she felt there was a difference in the availability of services and support in Glasgow and other parts of the country.
She said: "I had a meeting with some key members of the cardiac team in Glasgow and they explained that the structure for cardiology care was different across the country. I found this really problematic as I felt the support we were able to access in Glasgow fell away when we were discharged and returned home and this seemed wrong to me.”
David McColgan, head of British Heart Foundation Scotland said: "The parents and families of babies born with congenital heart disease are already facing terrific stress, so it is wrong that levels of care and support differ across Scotland.
"Everyone who has a congenital heart condition deserves the best start in life, irrespective of their postcode."
Rachel Hewitt, Programme Manager on the CHD standards work at HIS, said: "The standards relate to levels of performance that people should expect from health services and cover the key issues relating to the provision of safe, effective and person-centred care and treatment.
“The development group showed passion and commitment and a wealth of experience, and it has been a privilege to work with people like Liza who have been so willing to share their unique and personal experiences on how CHD has impacted her life."
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