The heart attack survivors whose aftercare lets them down so badly
FOR Samantha Redmond Lyon, suffering a heart attack at the age of just 40 was devastating – but then she was told it had caused lasting damage in the form of heart failure.
Irreparable damage to the heart muscle means it is unable to pump blood efficiently around the body. this can cause breathlessness when simply walking upstairs – or even resting.
heart failure is a debilitating condition with a worse life expectancy than many cancers – up to a third of patients admitted to hospital with it will die within 12 months.
It can occur as a result of high blood pressure but is most commonly caused by a heart attack, as in Samantha’s case.
the media travel consultant, from Somerset, was told about her heart failure as she lay recovering from the triple bypass surgery she had needed after her heart attack.
‘I was lucky to survive,’ she says. ‘As I was recovering in intensive care, a pain management nurse first mentioned heart failure, which was another blow on top of everything I had already been through.’
Samantha was anxious about how the condition would affect her life. As it turns out, she had little to fear.
When she was discharged from hospital she was allocated a specialist heart nurse who was on call for her for the first eight weeks, which provided ‘tremendous reassurance’.
‘the nurse checked how my mobility and activity diary was going and, in partnership with my cardiologist, tweaked the 14 tablets of medication I was taking every day to make sure I was getting them in the right ratio,’ says Samantha.
She was also given a place on a nine-week cardiac rehabilitation programme. She says: ‘It gave me the chance to exercise under supervision to give me the confidence to continue it at home and know how hard I could push myself.’
three years after being diagnosed, Samantha is about take part in a 5km run. She has check-ups with her cardiologist twice a year but her only health issue is occasional tiredness and fluid retention.
‘I am one of the lucky ones,’ she says.
Samantha is a perfect example of how well heart failure patients can do with the right help, but her experience is far from the ‘norm’.
Many of the 900,000 people in the UK living with heart failure do not receive the medication or the specialist help that could improve the quality of their lives – or help them to live longer.
Research from the University of Glasgow presented to the european Society of Cardiology last year found that as many as four out of five people with heart failure are not getting the right drugs or the right doses.
Following this, the All-Party Parliamentary Group on heart disease made 10 recommendations to improve treatment for people with heart failure, including rehabilitation programmes for all and greater awareness of the condition among medical staff.
heart failure is becoming increasingly common because people are living longer and more are surviving heart attacks.
Yet currently only two-thirds receive follow-up care from a specialist cardiac nurse or doctor and fewer than half (42 per cent) of those treated in hospital for heart failure are put on the three drugs recommended for the condition – ACe inhibitors, beta-blockers and diuretics known as MRAs, or Mineralocorticoid antagonists – according to the latest national heart Failure Audit last year. the drugs help by lowering blood pressure.
‘Lowering blood pressure reduces the work of the heart – it’s like carrying a lighter shopping bag if you are elderly,’ says dr Mark dancy, a consultant cardiologist at Imperial College healthcare nhS trust.
he said most patients should be on all three medications, but because they can make patients light-headed GPs tend to be reluctant to prescribe all of them.
dr dancy added: ‘Finding the lowest level an individual can operate at is time-consuming and needs experience. however, taking these drugs not only makes patients feel better, but prolongs life and keeps patients out of hospital, so we should be doing better on this front.’
In addition, england’s national Institute for health and Care excellence recommends that all heart failure patients should be under the care of a cardiologist and a team of specialist nurses.
Research shows that follow-up care by these specialists improves quality of life and saves the nhS money by keeping patients out of hospital. But the number employed by the nhS is falling.
Meanwhile, the number of hospital visits due to heart failure in england have gone up from 107,000 in 2004/5 to 146,000 last year and around 7pc of men and 5pc of women in Scotland are living with coronary heart disease.
dr dancy says the heart failure nurses do much more than offering basic support.
he said: ‘they can give intravenous drugs to patients at home, which prevents the need to occupy an expensive hospital bed.
‘But their numbers have been falling even though there is good evidence that they are cost-effective.’
When heart failure nurses were introduced in the Swansea area between 2013 and 2015, it led to £300,000 of savings in hospital admissions. Liz Cook believes specialist help could have made all the difference to her.
the 57-year-old from newcastle upon tyne was diagnosed with heart failure brought on by high blood pressure three years ago.
After her diagnosis, she saw a blood pressure specialist only once at her local hospital and was given all three recommended medicines for heart failure.
Yet the support stopped there. And two years after her diagnosis, she suffered two heart attacks for which she needed surgery to insert two stents – tiny tubes – in her arteries to keep them open.
She still hasn’t seen a specialist nurse. ‘the care I have received from the nhS has been substandard,’ says Liz, who is divorced with four grown-up children.
‘Once I was diagnosed with heart failure it was just “here are the tablets, now get on with it”.
‘It is very frustrating as I am sure it would make a massive difference having access to a heart failure specialist nurse.
‘Before I started having problems with my heart, I worked full time entering data for the nhS and had a very active social life.
‘heart failure has stopped me doing all that. I get tired very easily and breathless for no apparent reason.’
It is not just those coping at home who don’t get the right support. heart failure patients treated on specialist cardiology wards are less likely to die in hospital than those on general medical wards and those seen by a specialist are twice as likely to be prescribed all three of the recommended drugs for heart failure.
however, the latest national heart Failure Audit compiled by University College London revealed fewer than half the heart failure patients admitted are treated on cardiology wards.
Women are also much less likely to get specialist care than men.
dr Mike Knapton, Associate Medical director at the British heart Foundation says the nhS needs more cardiologists and heart failure nurses.
even with the staff we have got, services need to be better organised,’ he said.
Campaigners say the patchy provision is putting lives at risk – as well as costing the nhS money.
‘heart failure is often considered a lost cause,’ says nick hartshorne-evans, head of heart failure charity the Pumping Marvellous Foundation.
‘Getting the right care can make a significant impact on patient outcomes. the frustrating thing is we know what treatment works, but we aren’t offering it.’