Heart disease: action plan

5. Priority 2: Timely and equitable access to diagnosis, treatment and care

We will ensure that everyone with suspected heart disease in Scotland has equitable access to timely and evidence-based diagnosis, treatment and care.

There are several challenges to achieving timely and equitable access to diagnosis and treatment, care and support for people with heart disease in Scotland.

An ageing population, and increased survival from acute events, means that many more people are living with conditions which require long-term support. Increasing numbers of people with congenital heart disease are surviving into adulthood, often requiring complex, lifelong care, while the understanding and improved diagnosis of inherited conditions means more people require access to genetic services for diagnosis and resulting specialist cardiology care.

Cardiology admissions have increased every year in the last decade^[25], with an increase of 25% since 2009 for overall admissions. Within this, emergency admissions have risen 30%. The Covid-19 pandemic has placed extra strain on acute NHS services and reaffirmed the need to find ways to ensure capacity within such services.

It is therefore important that, where possible, care is provided close to home and seeks to avoid hospital admission. Ensuring early intervention, supporting people to self-manage their condition and enabling sign-posting to wider support is also vital. Supporting this will involve transformation in models of care, integration and collaborative working across primary, community and acute care, integration with wider community services including those provided by the third sector, and the use of digital technology to support new ways of interacting with patients.

The Covid-19 pandemic has accelerated some of this transformation because, in response to the challenges of delivering care during a pandemic, new models of care have been adopted, and digital technology used more widely. We must continue to support the adoption at scale of digital technology while being mindful of, and taking steps to address, the potential digital exclusion faced by some people; including older people, those living in areas of deprivation and people for whom English is not a first language.

Throughout the provision of care for people with heart disease is the need to ensure that they can receive a timely diagnosis and access to treatment. It is also important to support people in their recovery and in living well with their condition.

Ensuring that people can be directed to appropriate resources to support them in self-management of their condition is an important part of this. Services like cardiac rehabilitation are instrumental to supporting people in living well with cardiac disease but are often limited to people who have had a heart attack or cardiac surgery. There is scope to consider how ensure that people with other heart conditions can have access to the rehabilitation support that they may need. Part of that is about working collaboratively to ensure that we can embed the principles of the World Health Organisation's Rehabilitation in Health Framework which puts informal and self-directed care as the foundation, and supporting people to access the services that are most appropriate for their needs.

We must also recognise that heart disease can have a significant impact on people's emotional and psychological wellbeing, and explore how best to support people in coping with these impacts.

Living well with heart disease also means that where necessary, people are supported towards the end of their life. At present, many people who die from heart disease are not considered for a palliative approach, or palliative care when they would benefit from it and we must improve this.

5.1 Nationally agreed pathways of care and a national resource for their implementation

In order to drive forward positive change in the models of care for people with heart disease across Scotland, it is important that we have a 'Once for Scotland' vision of what good quality care would look like across a whole pathway (including key aspects of care ranging from primary, community, secondary, specialist and palliative care). A pathway refers to the varying services and care professionals that a person may encounter throughout their experience of diagnosis, treatment and support, living with heart disease.

Cardiology is a multi-professional discipline with care provided by cardiologists, cardiac surgeons and increasing roles for specialist nurses, cardiac physiologists, cardiac scientists, pharmacists and clinical psychologists. Although a high proportion of the workload relates to emergency and urgent care, the speciality of cardiology also provides elective care and long-term disease management which is increasingly provided in the community.

There are many examples of nurse led models of specialist care for people with heart disease. For example, people with heart failure are supported by heart failure specialist nurses, many rapid access chest pain clinic services across Scotland are nurse-led, and a genetic testing service for hypertrophic cardiomyopathy (HCM) is supported by specialist nurses. There are also examples of nurse-led models of care for arrhythmias, valvular and congenital heart disease in some health boards in Scotland.

Services and support for people living with heart disease are provided by a range of health care professionals outside of cardiology, including those working in primary care, community care and the third sector. Seamless care is dependent upon close working between all areas of the system.

Pathways can differ depending on the condition and can sometimes be complex, involving several professionals and varying tests and interventions. Local areas will have existing pathways, which vary depending on local needs or service availability.

Nationally agreed pathways are model pathways agreed at a national level that set out the vision for how diagnosis, treatment and care for people with heart disease should be delivered. This agreed 'Once for Scotland' vision enables clarity of messaging and supports local pathway development.

There are several areas where pathway development work is already ongoing. This includes the Scottish Obstetric Cardiology Network's development of pathways of care to ensure that pregnant women with heart disease have access to specialist care and advice, the Heart Failure Hub's remit to continue to maintain up-to-date pathways information and the Network for Inherited Cardiac Conditions Scotland's development of nationally-agreed protocols and guidelines to support better, safer management of patients with inherited heart conditions.

A national resource to support a 'Once for Scotland' approach to heart disease will help us to drive forward pathway development and implementation across Scotland. The development of nationally agreed pathways will enable clarity around the competencies of professionals delivering care to people with heart disease, support more effective integration across clinical boundaries including between specialties and also amongst those working in primary, secondary and community care.

Pathway development should;

• Consider the integrated nature of care for people with heart disease and take a whole systems approach including primary care, acute and specialist care, self-management, cardiac rehabilitation, psychological support and palliative care.
• Identify services best delivered at regional or national level

For a national vision to translate to change in practice, requires significant effort and it can be very difficult in linking policy vision at national level into widespread change within services. Such change is often led by local clinicians working in that particular health board and they face a host of challenges, not least the time and energy involved in navigating the health planning system while also working as a clinician.

Models such as the Heart Failure Hub, Cardiac Rehabilitation Champion and national networks (SOCN, NICCs) have demonstrated success by providing a central driving force behind sharing best practice, and advocating at national level for important changes. It is important that we adequately support and, where appropriate, expand this model.

To do this, we will establish a national resource responsible for

• Developing clinical consensus on guidelines, treatments and pathways across Scotland for a range of heart conditions.
• Supporting local clinicians in developing and implementing models of care in line with nationally agreed pathways.
• Supporting clinicians in navigating local, regional and national governance structures involved in the implementation of new models of care.
• Working with NES to develop and deliver a standardised educational programme that supports the delivery of key aspects of the national pathways.
• Supporting the development of additional networks or hubs as required to share good practice.
• Engaging with GP clusters to promote new models of care including community cardiology models.

5.2 Improving diagnostics

Timely access to cardiac diagnostics is an area of concern in Scotland. There are documented challenges in capacity for delivering diagnostic CT Coronary Angiography in line with current guidelines^[26], and workforce issues within cardiac physiology are an important factor limiting the capacity to provide timely and equitable access to a range of diagnostic tests including ECG and Echocardiography. While we have focused on access to these tests for diagnosis, they are also vital in supporting decisions about long term management of heart conditions and so have a wider impact.

We do not adequately measure the time to diagnosis for people with heart disease across Scotland at present, although there are guideline recommended approaches. For example, SIGN guideline 147^[27] sets out an appropriate approach to echocardiography in people with suspected heart failure, and SIGN guideline 151^[28] recommends the routine use of CT coronary angiography to aid the diagnosis of stable angina.

To ensure that we can drive forward improvement in access to diagnostics, it is important that we take a more structured approach to collating information on diagnosis at national level to accurately identify unwarranted variation. Therefore time to diagnosis will form a core part of our wider work to improve data collection and support quality improvement.

It is also important to prioritise the spread and adoption of models of care that could improve the delivery of timely diagnosis for people with heart disease. Examples include embracing innovation in diagnostic techniques (such as the use of hand held echocardiograms), establishing one stop diagnostic clinics, or the provision of tests like ECGs, blood tests or echocardiography in the community.

We will support the development of pilot projects of innovative models of care for cardiac diagnostics, enabling us to learn from, and scale up such models to ensure that everyone across Scotland can benefit.

5.3 Living well with heart disease

5.3.1 Cardiac rehabilitation

Cardiac rehabilitation services are important services which provide vital support to help people get back to everyday life as much as possible after developing heart disease including heart attack, heart surgery or for people who have had an interventional procedure. A number of cardiac rehabilitation services across Scotland also offer support to people with heart failure.

The traditional model of cardiac rehabilitation is structured around exercise and education but rates of uptake across the UK have been stagnant and particularly poor among women and people from a black or minority ethnic background^[29]. At the moment, the service in Scotland is generally limited to those who have had a heart attack or cardiac revascularisation but the vision set in SIGN 150 is of a service 'with a central focus on a specialist assessment providing an individualised programme of care to improve outcomes' ^[30]. This enables a more holistic focus on the individual, and supports them to access the support which is best suited to their needs. We will work to ensure more equitable access to these services for people with a range of heart conditions, where appropriate.

These services were severely impacted by the Covid-19 pandemic. Many had to implement virtual-only options and others paused services entirely while staff were redeployed. A number of digital offerings were created in response to these challenges. It will be important to maintain digital offerings alongside face to face services to improve choice and increase the uptake and reach of services.

In August 2020, Scottish Government published a Framework for Supporting People through Recovery and Rehabilitation during and after the COVID-19 Pandemic. This established our desire to see a whole system approach to a Once for Scotland Rehabilitation strategy to deliver rehabilitation support to everyone who needs it.

The Framework recognises the impact that Covid-19 has had on rehabilitation services and the increase in demand across these services as a direct impact of the pandemic. In particular it recognises that some people who have contracted Covid-19 may have resulting cardiovascular, respiratory or other symptoms that would benefit from rehabilitation. It also acknowledges the potential deconditioning of people's health that may have resulted from shielding, and the wider rehabilitation needs of people with long term conditions that may have been impacted by a reduction in services during the pandemic. The principles of the Framework are;

Leadership, person-centred, outcomes focused, multi-disciplinary and multi-agency, innovation, education and research, digital and quality improvement.

It is important that cardiac rehabilitation is strongly featured within the development of a Once for Scotland Rehabilitation strategy and that previous work and learning from the implementation of the Heart Disease Improvement Plan (2014) is shared. In particular, the development of a multi-disciplinary assessment tool for cardiac rehabilitation could support the principle within the Framework 'rehabilitation in any setting should include physical, mental, social assessment and intervention utilising a biopsychosocial model collaborating towards a common goal'.

Quality improvement is a core principle within both the rehabilitation framework and also within this Heart Disease Action Plan. However, there is a gap in our national understanding about cardiac rehabilitation services. Scotland does not currently contribute to the National Audit of Cardiac Rehabilitation, nor do we centrally collate information about cardiac rehabilitation to support improvement.

Collection of data on cardiac rehabilitation has a critical role in measuring healthcare delivery and supporting quality improvement for people with heart disease. That data should be linked with data from acute services, and outcome data, to provide a complete picture of who accesses cardiac rehabilitation, what service model, and what the outcomes are at an individual, regional and national level. This will provide timely and individualised feedback and support us to drive improvements in the provision of care.

It is therefore important that cardiac rehabilitation features strongly within the wider work to improve data collection and data utilisation for quality improvement outlined in Priority Four.

5.3.2 Psychological and emotional support

The Covid-19 pandemic has affected every single person in Scotland. Many of us have been anxious or worried about our health, our family and friends, and changes to our way of life. Some individuals, families and communities will have found the past few months really tough. We know that the mental health impact of Covid-19 will not have been felt equally across Scotland and that people who have been required to shield, or are in a higher risk group, may be particularly impacted.

Before the pandemic, there was already a vital need to better address the psychological and emotional needs of people with heart disease. Depression and anxiety are common problems for people with heart disease and are associated with excess mortality, excess disability, greater healthcare expenditures and reduced quality of life^[31].

It's also important for us to be cognisant of the significant psychological impact for people living with congenital heart disease and for families bereaved by sudden cardiac death.

In October 2020 we published 'Mental Health – Scotland's Transition and Recovery'. This is our response to the mental health impacts of Covid-19. It addresses the challenges that the pandemic has had, and will continue to have, on the population's mental health. It lays out key areas of mental health need that have arisen as a result of Covid-19 and sets out a joint focus on whole population level approaches to improving mental health alongside targeted support for vulnerable groups.

Key actions within the Mental Health recovery plan include a commitment to modernise pathways into mental health services from primary and unscheduled care, the need to utilise digital services such as computerised CBT and to ensure that appropriate support is provided to those whose mental health has been affected by shielding or as a result of belonging to a group at higher risk from Covid-19.

Through the delivery of the Heart Disease Action Plan we will work to support the Mental Health Transition and Recovery Plan's continued focus on early intervention, prevention, and easier access to support services. We will also support the involvement of partners and services across the whole health and social care integration landscape, including in relation to the provision of emotional wellbeing support for people with heart disease.

We will ensure that the cCBT programme reflects the needs of people with heart disease and we will work to make that service available to all cardiac rehabilitation and specialist nursing services across Scotland.

This will help us to support a stepped care approach to mental health for people with heart disease which is recommended by several guidelines and standards, including those on heart failure^[32] and cardiac rehabilitation^[33].

This approach is one in which the least intrusive intervention is provided first. If a person does not benefit from this intervention, or has more severe psychological needs, then they should be offered an appropriate intervention at the correct level of the stepped care approach. Delivery of this approach must form a core part of the nationally agreed pathways for people with heart disease, and we should consider the most appropriate way to effectively deliver a stepped care approach, taking account of the role played by the third sector, primary care, and specialist support.

A limiting factor to achieving this provision, is the lack of clinical psychologists across Scotland with a specific remit for providing psychological support for people living with heart disease. Therefore support for those providing lower level interventions and potential for referral on for more intensive interventions is limited.

To appropriately support the spread and adoption of the stepped care approach, there is a requirement for psychology liaison roles to support health care professionals providing cardiac rehabilitation or specialist nursing care to deliver levels one and two interventions and to act as a resource for onward referral. These roles may be best organised at regional or national level and in collaboration with efforts to improve psychological provision for other conditions.

5.3.3 Palliative Care

Appropriate and optimal palliative care can reduce the number of hospital inpatient days, improve symptom control, increase the likelihood of people dying in the setting of their choice, and improve the satisfaction of the patients and carers^[34].

However, many people with end stage heart disease are not considered for a palliative approach, or palliative care when they would benefit from it. Compared to other conditions, people with organ failures, including heart failure, are far less likely to have access to palliative care services or a palliative approach^[35].

Case Study: The Caring Together Programme.

Thiswas an innovative partnership programme from Marie Curie, the British Heart Foundation and NHS Greater Glasgow and Clyde to improve the quality of palliative and end of life care for patients in the advanced stages of heart failure.  An evaluation in 2016 showed that the programme^[36]:

• improved symptoms and quality of life for people with advanced heart failure
• provided individual patient planning
• reduced hospital admissions and healthcare costs.

The need for access to palliative care is increasingly acknowledged as important for people with advanced heart failure, and access to palliative care is widely supported by heart failure services across Scotland. There remain challenges however, for people with heart failure who are not referred to a heart failure nursing service. It is also important to consider how to extend such support to people with other forms of heart disease, including coronary, valvular and congenital heart disease if and when required.

To support improvement in this area, access to palliative care should be considered as part of the national pathway development work. Furthermore, it will also be necessary to include access to palliative care as in indicator, where appropriate, within wider work on data collection and quality improvement.

Anticipatory care planning is a person-centred, proactive, "thinking ahead" approach, requiring services and health and care professionals to work with individuals, carers and their families to have the right conversations and set personal goals to ensure that the right thing is done at the right time by the right person with the right outcome.

Resuscitation issues are an important part of anticipatory care planning. As far as possible, and at an appropriate stage, it is recommended that a proactive resuscitation or Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision should be communicated in a way that informs the actions of health professionals when an individual's pulse or breathing has stopped.

However, many people with heart disease are living with cardiac implanted electronic devices (CIEDs), such as an implanted cardioverter defibrillator. As a person moves closer to the end of life it may become appropriate for the device to be switched off.

Providing a person with a cardiac implanted electronic device with high-quality end-of-life care and enabling them to have a dignified death requires consideration and discussion of deactivation of the shock function of their device. If a device is not deactivated in this way, a person may receive distressing shocks from the device during the last hours or days of their life. In some instances the device may delay the person's natural death with shock delivery that the patient would not have chosen to receive if they had been given a chance to discuss deactivation^[37].

Device deactivation is therefore an important component in anticipatory care planning and we will work to ensure that health professionals are well equipped to have sensitive conversations with patients around deactivating cardiac devices.

5.4 Actions

1. We will establish nationally agreed pathways of care for heart disease and provide a resource to support their implementation across Scotland. All aspects identified in this chapter (diagnosis, access to specialist care, cardiac rehabilitation, psychological and emotional support, long-term management and palliative care) should be addressed by the pathways.

2. We will establish referral guidelines for common symptoms (palpitations, breathlessness, chest pain and syncope) to support timely access to diagnostics.

3. We will pilot innovative models of care for cardiac diagnostics with the aim of improving diagnostic capacity for heart disease, and understanding the resource requirements to spread such models of care across Scotland.

4. We will ensure that the needs of people with heart disease are included within the implementation of the Recovery and Rehabilitation Framework in Scotland. In particular we will;

• Support the spread and adoption of holistic assessment for people with cardiac disease.
• Ensure appropriate self-management resources are available to people with cardiac disease.
• Work collaboratively with NES to develop rehabilitation resources to ensure that quality information and training about cardiac rehabilitation is available to health professionals.
• Ensure that workforce aspects of the rehabilitation and recovery framework support people with heart disease to access the right professional, at the right point in their journey.

5. We will work closely with the Mental Health Directorate to ensure that the psychological and emotional needs of people with heart disease are addressed. In particular we will;

• Support the expansion of the Computerised CBT programme and ensure that the needs of people with heart disease are embedded within that.
• Deliver access to Computerised CBT across all cardiac rehabilitation and specialist cardiac nursing services in Scotland.
• Promote and reflect the needs of people bereaved by sudden cardiac death within the implementation of the mental health transition and recovery plan.

6. We will support the development of psychological liaison roles to deliver the implementation of a stepped care approach to delivery of psychological support for people with long term conditions, including heart disease.

7. We will ensure appropriate implantable cardiac device deactivation features within Anticipatory Care Planning resources.

8. We will ensure that understanding access to timely diagnostic tests, access to specialist services, and access to cardiac rehabilitation and palliative care for people with heart disease is embedded within wider work on data and quality improvement to enable us to address unwarranted variation.