Since I was 11 days old, my every heartbeat has been dependent on a pacemaker. I was born with an abnormal heart rhythm and the surgery I had in 1978 at Glasgow’s Yorkhill Hospital was a world first. Since then, while I’ve lived a very full life, it’s one that’s been reliant on pioneering cardiac treatment.
By the age of seven I had been fitted with five pacemakers, each one by splitting my ribs to gain access to my heart. Early pacemakers were set at a fixed rate, making active play, gym and sports day impossible. They were unreliable and often needing reprogramming. I remember lying still and feeling dizzy as men in white coats armed with a magnet and electrodes made my heart beat faster then slower, as they learned how to make the pacemaker work effectively. I have been a medical curiosity all my life.
At 13, I had open heart surgery to repair a hole in my heart. Last summer, I was fitted with my 11th pacemaker.
Complex congenital heart disease (CHD) cannot be cured, but, due to medical advances, more people are living with a lifelong heart condition. Babies born in the 1940s had a 20 per cent chance of surviving into adulthood. Today, the chances for a baby born with CHD living that long are 90 per cent. Yet these success stories come with new challenges that healthcare services have not developed to meet. Healthcare standards offer a means to significantly improve care by engendering trust, safety and patient empowerment. That’s why I’m delighted to be involved with Healthcare Improvement Scotland’s development group to create standards for CHD services, and to work with them to enable people with this condition to live as normal a life as possible.
Standards set the levels of performance that people should expect from health services. They are based on evidence relating to effective clinical practice and cover the key issues relating to the provision of safe, effective and person-centred care and treatment. Most importantly, they take into account patients’ needs and views.
But what exactly are the issues that people with CHD can face that the standards will look to address?
CHD is the most common congenital anomaly, affecting around 1 per cent of babies. A quarter of these babies require medical intervention in the first year of life. Currently there are around 20,000 people with CHD in Scotland. Half of this estimated adult population are unknown to specialist services, often having been discharged before the need for lifelong care was recognised.
While medical advances have saved many lives, they can involve invasive procedures which can be frightening, painful and overwhelming. Early separation due to medical care can have a psychological impact on both child and parents. Living with CHD can affect schooling, employment, finances and raising a family. It significantly increases vulnerability to neurodevelopmental issues, depression, anxiety and post-traumatic stress disorder. Yet these outcomes need not be inevitable. I believe that the standards we’re now developing will help to address these needs.
For me personally, it’s been a long journey to get to this stage, supported by the cardiologists, nurses and surgeons involved in our specialist care, who witness daily what it means to live with CHD. Although I am grateful to the NHS for saving my life, I have experienced multiple life-threatening challenges in my care provision and a lack of understanding about the psychological impact of living with a serious lifelong health condition.
At times, living with CHD can seem relentless. Having to fight for appropriate medical care, at your most vulnerable, can feel overwhelming. Many of the challenges we face occur at a local level, for example, when we present to GPs and emergency care. Standards for local care provision are vital to inform safe, equitable and consistent care. I am far from alone in experiencing these challenges. We should be proud of our NHS as testament of our collective humanity. But having experienced it at its best and worst since my first pacemaker all those years ago, I want to help to make it better. I owe that in return.
Dr Liza Morton is a chartered counselling psychologist working in private practice and at Strathclyde University. Liza represents patients on the Standards Development Group for CHD for Healthcare Improvement Scotland.