A roundtable discussion on the future for heart disease
Special feature with BHF Scotland
Recent life expectancy figures have revealed improvements in heart disease are beginning to stall. Despite significant medical advances since the 1960s, heart disease remains a leading cause of death in Scotland, accounting for 30 per cent of all deaths. However, the Scottish Government’s actions on heart disease are set out in a plan that is now five-years-old.
Scotland is ready for a new heart disease strategy.
The British Heart Foundation (BHF) Scotland is working with clinicians and patients to develop key priorities for a new heart disease strategy for Scotland. As part of this, a development group is tasked with overseeing the project. This group consists of clinicians – including those working in primary care, cardiology, psychology and a patient representative. Holyrood and BHF Scotland brought some of the development group together recently, to discuss what a future heart strategy should address.
Kicking things off, patient representative Chris Macnamee told the roundtable: “With an ageing population and multimorbidity [two or more chronic medical conditions], the concern is we’re living longer but we want that period to be at least bearable, rather than miserable.”
“And specialists often don’t talk to each other in different areas,” he added. “My mother had two specialists and they didn’t talk to each other. They said, ‘oh, we will swap a letter’.”
Retired cardiologist Professor Stuart Pringle, chair of the development group, agreed that there was a communication issue.
“Patients, going through the system, they’re surprised that the person or professional at that time isn’t always aware of what’s going on elsewhere,” Pringle said.
He noted that the systems were different depending on the health board and they “are not talking to each other, so it’s difficult to access that information in real time”.
Napier University Head of Cardiovascular Health, Professor Lis Neubeck said “it should be easy in Scotland” to link up all of these systems.
“We have a single number that links all of our data, so theoretically it should be possible to do this. But we have barriers that we’ve created ourselves in terms of data sharing, and I think we need to be a bit smarter,” she added.
At this point, MSP Alison Johnstone, Scottish Green spokesperson for Health and Social Care, interjected: “I’m interested that this is the first topic that we’ve discussed at length today, because it’s coming up time and time again.”
Johnstone said pharmacists had told her they need more information on patients, especially “if we really want to see more people being treated in the community and at home”. “They could be saving us a fortune, they could be helping people,” she said.
Chair Pennie Taylor asked the roundtable: “Is anybody getting it right, do we know any other disease areas where this has been cracked?”
Kylie Strachan, BHF Scotland policy and public affairs manager, said the Scottish Care Information Diabetes Collaboration (SCI-DC) was one example. SCI-DC is an information system that allows the sharing of patient care information between primary and secondary care. Data from hospital specialists and GPs are transferred into a data warehouse and this allows access to up-to-date information for all those involved in the care of patients with diabetes.
However, Strachan added that more needed to be done about the “bigger picture, and the linkage of data between different parts of the system”. She said data, and data sharing, should be “a central feature of a future heart disease strategy”.
As an example, she said there was little easily accessible national data available on the use of coronary angiograms across Scotland, used in the diagnosis of heart attacks and angina.
Due to this lack of national data, and in order to get a better picture of variation she said “much of what we’ve had to do is go and ask people, because we don’t have national data to show variations”. This highlighted another priority for a future strategy: addressing issues with access to diagnostic services for people with heart disease.
Strachan said: “There are some conditions where you really need that diagnosis quite quickly.”
Cardiology nurse consultant Dennis Sandeman said the three areas where diagnosis was needed quickly were “coronary heart disease, atrial fibrillation and heart failure”.
Pringle turned the conversation to access. “We talked about barriers to IT, but there’s human barriers to accessing the system too,” he said.
“In one of the meetings, we talked about how useful it might be to have a single person that you can contact as a patient needing advice,” he added.
BHF Scotland Health Service Engagement lead Richard Forsyth said that “lifelong support”, for people living with heart diseases, needed to be looked at. “When you discharge someone into the community, sometimes it’s seen as being an exit from the NHS and you’re put out into the wilderness, and you can kind of fumble about trying to get back in to the system if you need to,” he explained.
Strachan agreed, suggesting that “a broader look at how people live with heart disease would be important”. “We need to look beyond mortality,” Strachan said. “Heart disease is something that people live with and we’ve tended to look at that acute part of the system and have not looked as much at what happens before and what happens after for people.”
Neubeck noted the key role that specialist nurses in the community can play in bringing people back into health systems, however, she said: “Then the funding runs out and the positions are not continued, and people feel dropped.”
NHS Greater Glasgow and Clyde consultant clinical psychologist Dr John Sharp said another focus needed to be on realistic medicine, and shifting to patient-centred care, “but also to shift a lot of responsibility for the care to communities and patients themselves.” Realistic medicine refers to putting the person receiving health and social care at the centre of decisions about their care, and creating a personalised approach.
For Marie Curie Head of Policy and Public Affairs Richard Meade “it’s partly about better interconnectedness between the specialties”. “So, having the cardiologists and palliative care understanding each other. Sometimes they don’t understand each other,” he said.
The importance of helping people with heart disease understand their condition, and their treatment, was highlighted in a personal story from Macnamee, who said when his mother was suffering from heart failure she asked a doctor, “when am I going to get better?” and was told, “well, you’re not”. He said: “That was a shock to her.”
Sharp reported he had been working with some cardiologists on using ‘teach-back’ with patients, a communication technique that puts the onus on the clinician to repeat what was said back to a patient. “As a rule of thumb, when you have a consultation with a patient, they will remember about half of what you told them. So, at the end of a consultation, you would say, ‘I need to know I’ve done a good job of explaining this to you, can you repeat back what we’ve discussed today’ and it gives them an opportunity to see what they’ve missed, and what misconceptions they’ve got as well.”
Next, the conversation turned to the workforce. An audible gasp filled the room when Sharp said:
“You’re looking at the only clinical psychologist in Scotland that specialises in heart failure.
"There are other clinical psychologists, not many but a small handful, that work in cardiac rehabilitation.”
Sharp said “a huge number of people turn up to A&E with chest pain” but for 25 per cent of those people, it was a non-cardiac chest pain. “But what happens to those people? They’re kept in, typically overnight, bloods taken and then in the morning they’re told there’s nothing wrong with them and away they go.
“At no point does anyone say, ‘well, wait a minute, you’ve come in with chest pain, there must be some kind of aetiology underlying this, it’s probably panic disorder’.”
He said the employment of more clinical psychologists could help identify that, and: “we’re not really that expensive”. “We don’t have fancy theatres and equipment, but it requires a board and service to fund that,” Sharp said. “I think the question needs to be different, it’s not about what it will cost but what we can save.”
Neubeck felt that the psychological aspects were “the thing that the patients really say that they struggle with most of all”.
The lack of clinical psychologists in cardiology led the conversation to other workforce issues. NHS Scotland workforce statistics revealed that in the last five years there had been a 46 per cent increase in demand for cardiac physiology services in NHS Scotland. However, 70 per cent of cardiology departments indicated they had at least one vacant cardiac physiology post and the overall vacancy rate was around 10 per cent.
Neubeck told the roundtable this issue was compounded by problems in ensuring an adequate training programme for cardiac physiologists in Scotland. Strachan said: “It’s a small profession in terms of numbers, compared to nurses and cardiologists, and it probably suffers from a lack of visibility in terms of what it does.” But for Pringle, “education and training is a huge issue. The average school leaver does not know that it’s an attractive job.” Pringle said the discussion so far had highlighted “the magnitude” of the problems which needed to be addressed, but said the strategy was not about going with “a huge shopping list” to the next Scottish Government.
BHF Scotland is currently gathering support for the new heart disease strategy from across the political spectrum.
Scottish Conservative Shadow Health Secretary Miles Briggs told Holyrood his party “supports calls for a new comprehensive national heart health strategy to be implemented and in government after 2021” and that it should be “prioritised”. “It is clear that we have not seen the progress we need to improve heart health and heart disease outcomes in Scotland, especially around women and heart health issues and that needs a renewed focus and action from government and NHS Scotland,” Briggs said.
Following the roundtable discussion, Johnstone told Holyrood: “Because heart disease is still such a big issue in Scotland, it absolutely makes sense to update our strategy regularly to keep up with the latest developments.” “For example, it is extremely concerning that heart failure is often undiagnosed in women and that so many people are still unaware that they have high blood pressure. A new strategy could tackle these and other pressing issues,” she said.