Thousands of Scots living with heart disease missing out on access to essential support

• A new report from CHSS calls for more support for Scots living with heart disease – Scotland’s biggest killer

• Only 44% of surveyed people living with a heart condition have accessed rehabilitation

• 59% said their heart condition affected their ability to be physically active

• 46% said their self-confidence had been affected by their heart condition

• 40% said their heart condition had negatively impacted their mental health

 

A new report from Chest Heart & Stroke Scotland released ahead of World Heart Day has revealed that hundreds of thousands of people in Scotland are missing out on essential support to manage the impact of heart disease and other heart conditions.

The charity is calling for the Scottish Government to prioritise access to rehabilitation services and for improved referrals from the NHS to third sector partners who provide essential services.

Only 44% of those surveyed had accessed rehabilitation for their condition, with 59% struggling with physical activity.  Physical activity is one of the key ways to improve heart health and mitigate the impact of heart disease.  Higher levels of physical activity are linked with lower risk of heart disease, but for those who are mostly inactive, even small increases in exercise can make a significant difference.

The report also revealed that:

• 60% of those surveyed experienced some kind of difficulty in accessing services 

• 28% of people with a heart condition report they were not referred to NHS rehab at all 

• 20% were concerned about managing their condition 

• 20% were concerned about coping with stress and anxiety 

The findings of the report come at a time when there has been an uptick in the death rate from coronary heart disease  with a gradual increase in the rate of deaths over the past four years following years of improvements

Chest Heart & Stroke Scotland is part of the Right to Rehab coalition – a group of Scottish charities calling for greater access to rehabilitation in Scotland.

The charity also delivers programmes aimed at improving access to physical activity for people living with its conditions including its Movement Matters exercise programme, and through partnerships with Walking Football Scotland and the Scottish FA.

Chief Executive of Chest Heart & Stroke Scotland, Jane-Claire Judson said:  “At Chest Heart & Stroke Scotland we are working hard to deliver accessible physical activity programmes for those living with our conditions to improve their health and wellbeing. People with our conditions who use CHSS services rate their health and wellbeing higher than those who don’t.

“We want everyone with a heart condition to be able to stay physically active in a way that is accessible to them.  We need the Scottish Government and the NHS to improve links between the third sector and health and social care services so more GPs and NHS staff can directly refer people to the services we know work.

“We will also continue to push for the right to rehab to be incorporated into law by the Scottish Government. The hundreds of thousands of Scots living with heart conditions deserve better.”

Chest Heart & Stroke Scotland’s Community Healthcare Support Services focuses on supported self management to improve health outcomes. The charity’s 1 in 5 Report, published in October 2023, revealed that people receiving support from the charity rated both their health and mental wellbeing higher than those who had not been able to access CHSS support.

CHSS also provides access to free health information and education resources, including a free online resource launched earlier this year – HEARTe 15 – aimed at improving women’s heart health.

LIVED EXPERIENCE – Margo Gibson

Margo Gibson, 61, lives in Kilmarnock. Married to Tam, Margo has two grown-up sons and an eight-month-old grandson. She is now a regular at Killie Heartmates, a Chest Heart & Stroke Scotland affiliated peer support group in her hometown.

For the third time in her life, Margo Gibson had undergone major heart surgery.

Previously she had recovered and put the experience behind to move on with her life. But this time Margo was anxious and concerned about her health, too afraid even to take a short walk

Today Margo has much more confidence, bolstered by completing a cardiac rehabilitation course and by attending a Chest Heart & Stroke Scotland peer support group for physical fitness.

The 61-year-old mum of two, who lives in Kilmarnock, attends Killie Heartmates in her hometown twice a week to be put through her paces.

She said: “Going to the Heartmates has given me a bit of confidence again. Everything changed after the operation, and I’m still adjusting to the new me. I had severe anxiety after the operation.

“Recovery is tough. I’d put on weight, and I needed to do something, but I was terrified even to go for a walk.”

Margo was five before doctors figured out something was seriously wrong with her heart. She and her older sister went to hospital to have their tonsils out where tests showed her heart was failing.

She was diagnosed with aortic coarctation, a condition where the aorta is too narrow, and the heart is forced to work harder to pump blood through. After an operation that removed the narrow part of the aorta, little Margo spent four months in hospital recovering.

Years later and after she’d met and married husband Tam, Margo wanted the go-ahead from doctors before starting a family. She stuck rigidly to their advice to have no more than two children.

But she never considered her heart condition as something that was serious, and she had no idea it would eventually be life-threatening. More obviously life-threatening was her diagnosis of breast cancer at 43, but again she dealt with months of treatment, including an operation and chemotherapy, and put it behind her once she’d been given the all-clear.

In late 2019 Margo began to feel constantly fatigued. Her GP sent her to hospital where doctors immediately put her on medication and referred her to cardiac specialists. In 2020, she had a stent put into her heart.

She said: “I still felt tired and breathless, but knowing it was my heart rather than something else made me less worried. No one told me how serious my condition was or how much I was at risk of collapsing at any time.

“I was a childminder, looking after up to six children at a time, and worked two days a week at a local nursery. I was always on the go, but I was working myself into the ground.”

In April last year, doctors told Margo she had stenosis of the aorta, which was causing her heart to work overtime. But she was still unaware of how serious her condition was. By chance, staff at the Golden Jubilee called Margo to ask her if she’d take part in a documentary. When she explained how ill she had been feeling, they asked her to come in immediately.

Within days she was undergoing open heart surgery to replace the damaged valve under the watchful eye of a Channel 5 film crew. The resulting footage was shown earlier this year in the documentary series The Hospital: Life on the Line.

The last 12 months have been a whirlwind for Margo from which she is still reeling.

She said: “I can’t just sit here and not try to do anything. I need to make the best of life. I do still have bad days where I worry about my heart and about the pain.

“But my wee classes every week have become my lifeline. I love going because these people all know what I’m going through, and they all want to help. It’s so lovely to feel part of something.

“I’d say to anyone who doesn’t go to a class like this that they are missing out. Recovery isn’t a bed of roses, but you don’t have to face it alone.”