A psychology lecturer who underwent pioneering pacemaker surgery as a baby will play a key role in a new project to raise standards of care for people with congenital heart disease.
This week, NHS Scotland announced that Dr Liza Morton is at the centre of a drive to improve the way people born with heart abnormalities are cared for throughout their lives.
She will represent the views of patients on a standards development group set up by Healthcare Improvement Scotland as part of the Congenital Heart Disease (CHD) Standards Project.
The 23-strong expert group, co-chaired by a paediatric cardiologist and a consultant cardiologist, will publish a set of standards for levels of person-centred care and treatment that people with CHD can expect from the NHS in Scotland.
Dr Morton wants to see everyone receive lifelong care and has called for details to be included in patients’ emergency care summary – a record which all healthcare staff can access when a patient needs urgent treatment.
She first petitioned Holyrood for improvements back in 2012 after she was sent away from A&E by staff who did not believe that her pacemaker was failing.
“I sat all weekend terrified it was going to completely break, when my son was five years old,” said Dr Morton. “On the Monday I went into the cardiologist again and I said ‘I am not leaving until you check my pacemaker’.”
Dr Morton may owe her life to such persistence as medics ultimately detected her pacemaker was faulty.
Her petition received support from MSPs and she has been voluntarily sitting on various health committees working to improve care since. Standards for the national service for people with congenital heart defects at the Golden Jubilee National Hospital were launched.
However, Dr Morton said similar guidance for local health boards was shelved when they were due to be published without clear explanation. Then COVID-19 hit, causing further delays.
Dr Morton said that about 50 per cent of patients with congenital heart defects are ‘lost to care’ and not reviewed regularly by cardiologists. Instead she said some patients emerge when they have to rush to A&E or become pregnant and develop cardiac symptoms.
“There is a lack of awareness with non-specialists medical people,” she added. “All too often GPs, medical staff in A&E do not know what to do with us. They are not referring us onto specialist services.”
Dr Morton, a Counselling Psychologist at Glasgow Caledonian University and the world’s youngest pacemaker baby, recently co-authored a book about the impact of living with a long-term heart condition entitled Healing Hearts and Minds – a holistic approach to coping well with congenital heart disease.
She said: “While there’s been a lot of pioneering innovation in medical care, we still haven’t necessarily thought about the impact psychologically and emotionally of living dependent on that care lifelong. That part has fallen behind.
“In the 1940s and 50s, 80% of us would not survive to adulthood. Whereas now, 80% will. So now, we have this growing adult population living with congenital heart disease – a hidden population, around half of whom will experience anxiety, depression or PTSD.”
Congenital heart disease is the most common congenital abnormality, affecting approximately 1% of babies. A quarter of babies with congenital heart disease require medical intervention in the first year of life.
Dr Morton underwent pioneering surgery to be fitted with a pacemaker in a world first operation of its kind at Glasgow Yorkhill Hospital in 1978, 11 days after being born with an abnormal heart rhythm.
Now on her 11th pacemaker, Dr Morton says the standards must focus on the need for lifelong specialist care for the 20,000 people living in Scotland with the congenital condition.
“Babies born in the 1940s with congenital heart disease had a 20% chance of surviving into adulthood whereas today that survival rate is 90%. However, approximately half of the babies with CHD are still being discharged before their need for specialist lifelong care is recognised, which means they don’t have access to the specialist services that could help them.
“By setting healthcare standards, we can significantly improve care by engendering trust, safety and patient empowerment, and that’s why I’m delighted to be involved with Healthcare Improvement Scotland’s development group to create standards for CHD and work with them to enable people with this condition to live as normal a life as possible.”
The Congenital Heart Disease Project development group will meet regularly over the coming months, with the aim of publishing a full draft of the new CHD standards for consultation in July.
Rachael Hewitt, Programme Manager on the CHD standards work at Healthcare Improvement Standards, says she is excited by the passion and commitment of all members of the development group.
“We are excited to be part of the ground-breaking work taking place in Scotland around raising standards of care for people with congenital heart disease” she said.
“The development group working on this is passionate and committed with a wealth of experience and it is a privilege to work with people like Liza who has been so willing to share her unique and personal experiences on how CHD has impacted her life.”
Dr Morton will also be a keynote speaker at the Heart Children to Host National Conference for Young People with Congenital Heart Disease (CHD) on 18 February – marking Global CHD Awareness Month.
She will share her experiences, and offer attendees lots of practical tips on coping with anxiety and optimising self-care.
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