The heart of the issue

Holyrood’s public petitions committee is hailed as one of the successes of the Scottish Parliament, and arguably one of its most memorable petitioners is Dr Liza Morton, who was reduced to tears in November 2012 as she made the case for national mandatory standards for GPs and cardiologists ill-equipped to deal with over 15,000 adults living with congenital heart defects (CHD) in Scotland.

 

The petition asks: “Is it ethical to provide world class care to save a baby’s life, with palliative rather than preventative treatment, if this care is not extended to the rest of that person’s life?”

Born with a hole in her heart, Dr Morton gave evidence from personal experience of poor care. She tells Holyrood: “When I spoke to the petitions committee I had no doubt what I was talking about because I’ve been through that.”

Dr Morton was fitted with a pacemaker at only 11 days old, the youngest baby in the world at the time to have such a procedure. She was transferred from Bellshill hospital to the Royal Hospital for Sick Children at Yorkhill because she was “basically dying.”

“They put me on an external pacemaker because I was fading fast, and I suddenly became pink and was fine, so they thought there’s nothing to lose, baby’s going to die anyway, and they took me to theatre and implanted a cardiac pacemaker. In those days they were quite big and bulky in a tiny wee baby” she says.

“It wasn’t easy growing up. I was in and out of Yorkhill a lot. My cardiologist was Dr Doig, and I mean we had his phone number. I didn’t go to the GP, it was ‘bring her straight in’ – they were amazing. In those days they had to get a physicist out from Glasgow Uni to come to teach them how to use the pacemakers, because they were so experimental, so I can remember spending hours just lying in a bed with this team of people in white coats. A guinea pig.”

Morton began to gain perspective on what was happening to her. “As you get older, especially teenage years, you don’t want to be special, you want to be normal.”

In her early teens a first variable-rate pacemaker enabled her to be more active, and soon after she had open-heart surgery. “People say ‘you’ll be used to this’, before they stick a needle in you. No, you don’t get used to it. In fact it kind of gets worse, because you’ve got all the bad experiences, so you don’t have that innocence that doctors know what they’re doing, you know?”

Being person-centred can be about small things, she argues: “I think it’s only a patient who can tell you what that means. It means things like my mum can come with me straight to theatre until I’m knocked out, instead of me being wheeled away from her through the big plastic doors by myself. That’s such a big difference.”

Advances in heart surgery in the last 50 years have ensured that congenital heart patients are surviving longer than ever. Dr Morton represents a generation of people who would not have survived before. There has been a shift in medical opinion she says, from the 70s and 80s when it was thought that such conditions were fixable by a single procedure, to the idea that lifelong care is needed. For Morton this represents “a success story” of medicine, “it’s just that no-one’s really thought what’s going to happen in terms of adult care.”

Morton’s own transition from paediatrics to adult care was “bizarre” because there was no specialist service at the time. She can remember being in the ward at Yorkhill aged 19 surrounded by babies thinking “this is wrong.” She was transferred to Stobhill’s acquired heart service, sharing a toilet with the geriatric patients. At this time, as a young woman in her early 20s, Morton just wanted to “go in, have surgery, get out and get back to life. They had kind of said when I moved there ‘it’s only your pacemaker that needs looked after, you don’t have to worry about all the other stuff.’ I wanted to believe that, because that means it’s not as serious as I’ve been brought up to think. So I kind of bought into that, until I wanted to have a baby.”

Morton had good care throughout the pregnancy, “but it all fell apart when actually I went to give birth. There was nobody there who even knew I had a heart condition, and it was a total disaster. Horrendous. I did report my concerns about this episode afterwards but it came to nothing. We left it because with a new baby we just wanted to get on with our lives.”

Morton wrote to MSPs with little response. She met with Dr Walker, consultant cardiologist at The Scottish Adult Congenital Cardiac Service at the Jubilee Hospital, who agreed more standards were needed.

“I remember that was my first appointment at the specialist service, and my mum and I came out and went and had a glass of wine to celebrate. She was tearful, and she said it’s the first time she actually felt safe, and that she could die now without having to worry.”

However, there were more difficult years to come. “I couldn’t access any help, nobody would listen to me, eventually I realised the pacemaker wasn’t working,” says Morton. No one would believe her that it was broken. She spent ten hours in Accident and Emergency before a cardiologist discharged her “with a virus.”

“I’m completely dependent. It was an intermittent fault, so if it had been a complete fault I wouldn’t be here. I know that. But because I’m completely dependent, the strain that puts on your heart. Beep beep beep.. nothing… Thud. Beep beep beep.. nothing… because your heart’s filling up with blood, and not beating, and then when it kicks in you get this massive thud, which then puts a strain on the muscle. It doesn’t feel very nice.”

“It was a really scary weekend. Sure enough when I went into the pacing clinic I asked to have it checked, and it was broken. I knew it was broken.”

She wrote an account of everything that had happened. “I was so emotional about it, and angry, but I thought I’m just going to put that to one side, because I think you have to balance that against the gratitude I feel toward the NHS. I wouldn’t be here if it wasn’t for these people, I don’t want to go in and bad mouth cardiologists, because I know how dedicated these guys are, and I know they’ve been there day and night for me.”

Realising that her experience wasn’t isolated, Morton joined forces with the Somerville Foundation and patient group Bravehearts to petition government: “I said I’m fed up having meetings about meetings. Something has to be done. This is ridiculous; people’s lives are at risk. My life is at risk,” she says. Surprisingly there was some resistance from fellow patients, anxious that existing services might be put at risk. “It’s been a very steep learning curve for me. Once you raise your head above the parapet you then become subject to everybody’s feelings and frustrations and difficulties and challenges, and you have to be prepared to take that on the chin, I think.”

As well as being the Somerville Foundation’s campaign manager in Scotland, Dr Morton is also Clinical Associate of Applied Psychology whilst training in counselling psychology. Has she been informed by her experiences? “Absolutely. I can remember particularly struggling in my teenage years and thinking I want to understand why I feel this way, and not being able to,” she says.

There are psychological hurdles for CHD patients: “If you’d been healthy and you suddenly got cancer you would be expected to be upset about it. You would be expected to go into the corner and have a good cry and feel angry. And you wouldn’t be angry at your doctors, you wouldn’t be angry at your family, you’d just be angry because you had cancer. I’m not angry with cardiologists, I’m not angry with my family, but I am allowed to say this is pretty crap.” Person-centred provision must include emotional and psychological support, she argues.

Although it’s been “a journey”, Morton’s experiences have allowed her to integrate the sick, driven and professional aspects of her persona, she says, even though “you grow up with this real awareness of your own mortality. It isn’t normal for a child.”

Since her emotional evidence session at the parliament, Scotland has seen the establishment of the Scottish Congenital Cardiac Network and a working group on Scottish standards. Dr Morton sits on both. The Government’s response  to the petition says: “It is expected that by involving patients and their representatives in the work of the network that the resulting improvements in local services will be truly person centred.” Consideration of the petition has been deferred until later this year to monitor progress.

However Morton still feels that the specialist service needs more resources to provide 24 hour on-call support. There are currently only three specialist consultant cardiologist posts in Scotland, and one of those is a vacancy. Has the slow progress put her off political engagement?

“I think we all have a responsibility to make things better, especially regarding our treasured NHS, and there are processes in place that allow us to influence change. It isn’t easy; the hardest thing is finding your voice and almost as difficult is getting others to listen. But if it is important then it is worth the effort.  Besides, I can better accept my experiences if I know they can be used to inform better care in the future for the heart children of today.”