Respiratory care - action plan: 2021 to 2026

Chapter One

Respiratory Conditions

Although 'respiratory condition' is a general term used to describe a large group of conditions that impair the airways and lungs, this plan is aimed at five specific lung conditions that make up over 90% of the burden of respiratory disease in Scotland. Other conditions affecting the lungs (for example, lung and pleural cancer and rare diseases such as cystic fibrosis) are already included within other Scottish Government strategies^[1].

The 5 conditions in the Plan are:

• Asthma
• Bronchiectasis
• Chronic Obstructive Pulmonary Disease (COPD)
• Idiopathic Pulmonary Fibrosis (IPF)
• Obstructive Sleep Apnoea Syndrome.

What are respiratory conditions?

Respiratory conditions are diseases of the airways and other structures of the lung. They are a major contributor to ill-health, disability and premature death. The most common of these are asthma and chronic obstructive pulmonary disease (COPD). The World Health Organisation has identified chronic respiratory disease as one of the four leading non-communicable diseases worldwide, along with cardiovascular disease, cancer and diabetes^[2].

Although most long-term respiratory conditions are not curable, various forms of treatment have been shown to help control symptoms and increase the quality of life.

Impact of respiratory conditions

The impact of respiratory conditions varies from person to person and can depend on many factors. Some people suffer chronic symptoms which have a significant impact on their life and those around them. Breathlessness and unpredictable exacerbations mean people become unable to work or study full time. Some people become socially isolated because they cannot participate in activities. Trips to Emergency Departments are also common and many people report traumatic events of being admitted to hospital for long periods of time. There is also a high incidence of heart disease, hypertension and diabetes within the respiratory patient group, which means some people have multiple health conditions to manage and multiple anxieties around their care and treatment.

Every winter, the risk of contracting flu adds additional strain to people's health and on the health service. In 2020, the risk of contracting COVID-19 led to significant life changes for many people living with respiratory conditions; and the long term psychological impact of this should not be underestimated. Anxiety and depression were already commonly reported and diagnosed in people living with respiratory conditions, but this is thought to have increased over the course of the Pandemic, as reported by a British Lung Foundation survey^[3].

Family members and carers can also be affected by the impact of living with and supporting someone with a respiratory condition. For example, a diagnosis of IPF can cause huge anxieties for spouses and family members. Others may have to give up work to become full time carers as conditions progress and worsen.

Development of the Respiratory Care Action Plan

Dr Tom Fardon, consultant physician in respiratory and general internal medicine in NHS Tayside established condition specific multidisciplinary groups to develop an understanding of the care and support currently available, existing gaps in service provision, examples of good practice and clinical priorities for improvement. The issues raised at these condition specific work stream meetings are reported in Annex A. Output from these groups has helped to inform the development of the Plan. The draft Plan was then put to a public consultation via the Scottish Government website in December 2019. The consultation received 120 responses from individuals and organisations over the period; which was extended to July 2020 in light of the pandemic.

The COVID-19 Pandemic

Since the publication and consultation of the draft Plan in December 2019, life has changed significantly across the world as we faced a global pandemic. In March 2020, NHS boards encountered unprecedented pressure and people were asked to stay at home to protect the NHS and save lives. Routine care was almost entirely paused as staff were redeployed across the sector. As NHS Boards remobilised services in 2020 and 2021, many aspects of routine care have remained in place thanks to virtual alternatives.

The impact of COVID-19 on health services has been, and continues to be momentous. For people living with a respiratory condition, this pandemic has been a double edged sword. The risk of contracting an airborne virus is a risk people face every winter and flu season; so many had started to shield as soon news of the virus broke. During consultation and subsequent engagement with third sector community groups, many people stated that leaving their home was too great a risk to take. Some found themselves with huge dilemma's: travelling to busy hospital sites for treatment or staying at home and missing out on potentially crucial interventions. Some hospital sites stopped aerosol-generating procedures – meaning people had to travel to specific 'hot-zones' where they could be done safely.

The longer term impact of this pandemic on respiratory services could be generational. The gaps in health inequalities are also now increasing and this has become apparent through work such as the Cosette Report^[4] which found people from Black and Ethnic Minority groups have been disproportionately impacted. Data suggest that pre-existing lung conditions do not predispose people to contracting COVID-19, as was initially feared, however those people with severe respiratory illness are less able to cope with the burden of the disease.

However, it is important to consider the secondary impact of this pandemic for these people. Delays to referral, investigation, and initiation of management; late presentation of new diseases, as well as the psychological toll of isolation and shielding. Over 80,000 people in Scotland with a respiratory condition were asked to shield; the largest group of people within the shielding list.

Some respiratory services have continued throughout the pandemic. Urgent suspected cancer clinics have been maintained throughout, along with outpatient services for urgent respiratory concerns. In-patient services have also continued and there has been a reduced impact of flu season, due to the widespread adoption of facemasks, hand hygiene, social distancing, and shielding.

Hospital and community respiratory teams have played a key role in the COVID-19 response across Scotland. New methods of working to ensure the safety of all patients, with or without COVID-19 infection, have delivered improvements that should be maintained and spread as we move forward.

The first draft of this Plan, which has been widely consulted on, has now been updated to reflect the unprecedented changes to people's health and healthcare service. We have written this Plan based on services remobilising mid-2021 but want to ensure all of the good practice and innovation from 2020 can be captured and built into services moving forward.

Contributing Policy

Although the overarching policy responsibility for respiratory conditions sits within the Clinical Priorities team in the Scottish Government, we have collaborated with many other teams and programmes to develop this Plan.

Scottish Access Collaborative & Modernising Patient Pathways Programme

The Modernising Patient Pathway Programme (MPPP) is working towards Improving patient journeys by delivering sustainable changes to support safe, effective, and person-centred care. In 2020, several respiratory projects were initiated.

The Scottish Access Collaborative was established in the autumn of 2017 to reform elective care services. The Collaborative focuses on a number of challenges including referral processes, streamlining return outpatient appointments and capacity planning.

For the respiratory programme, members of the Specialty working group came from 16 specialist areas and 6 different NHS board areas, giving the sub-group both a broad geographic and functional reach. This programme took the approach of identifying common respiratory symptoms, and then mapped each symptom against areas for improvement. This symptom based approach to respiratory care provides useful counterpoint to the disease specific approach provided by this Plan; both documents work together to provide a vision for the care of people with respiratory conditions in Scotland.

We will continue to work closely with both programmes and use learning from the respiratory projects to inform our wider implementation programme.

Rehabilitation Framework

In August 2020, the Scottish Government published the Framework for supporting people through Recovery and Rehabilitation during and after the COVID-19 Pandemic^[5]. This paper provides a strategic framework with overarching principles and high-level recommendations, which will inform and shape the provision of rehabilitation and recovery services across Scotland for the COVID-19 period and beyond. The rehabilitation programme will work with a wide range of stakeholders and is governed by a National Advisory Committee.

We will work closely with the Rehabilitation Framework programme to ensure that the pulmonary rehabilitation is a key focus in the implementation of the Framework.

Long-Covid

As the pandemic has progressed, there has been an increase in public and clinical awareness of some longer-term effects of COVID-19 infection. This has been referred to as 'Long-COVID' or 'post-COVID syndrome'

Emerging evidence shows that a significant proportion of people who have contracted COVID-19 go on to have extended rehabilitation support needs. This is not limited to Intensive Care survivors and those who received acute hospital care where needs can be complex and varied. A significant proportion of people that experienced milder symptoms during their initial illness are now struggling with a range of longer lasting symptoms.

The condition usually presents with clusters of symptoms, often overlapping, which may change over time and can affect any system within the body, including the respiratory system. People with Long-COVID can also experience generalised pain, fatigue, persisting high temperature and mental health problems.

The NHS in Scotland is already delivering care tailored to the individual needs of people experiencing the long-term effects of COVID-19 through local primary care teams, community based rehabilitation services and specialised secondary care where needed. However, we know that additional support along with new ways of working are also required if services are to provide timely and equitable support to all who need it. A multidisciplinary approach will be key to supporting people with such a broad range of symptoms.

Rehabilitation, clinical input and research are all critical to understanding and supporting recovery - and it is crucial that decisions about our response to Long-COVID are based on the latest available evidence.

It is critically important there is investment in providing support for people with Long-COVID and this is just one part of the package that is needed to provide the diagnosis, care and support that people need so urgently.

There is still much to learn and a great deal to be done, but Scottish Government, along with our partners are committed to working together to ensure people have access to the right services at the right time. As we continue to learn and respond to the pandemic, it is crucial that the decisions we take are based on the latest available evidence and are aligned to clinical guidance.

Our Vision & Aims

This Plan outlines a strategic approach to support health and social care stakeholders in the prevention, diagnosis, treatment and care of respiratory conditions, in order to achieve our vision:

Everyone with a respiratory condition will be able to access the care and support they need to live well, on their own terms.

We recognise that a collaborative approach is required in order to transform and improve the care of people living with respiratory conditions in Scotland. All policy in Scotland is underpinned by the vision and values of the National Performance Framework. To achieve the national outcomes, the National Performance Framework aims to get everyone in Scotland to work together.

Although this Plan covers the next five years, we intend for the RCAP Implementation Programme to be fluid and adapt to the pace of changes currently happening within health and social care. We need to work towards building meaningful data sets and from that, a set of indicators which will help us monitor progress and also track unmet need.

Under the five key priority areas, this Plan outlines a set of high level Commitments that the Scottish Government are making to improve respiratory care in Scotland. These commitments are broad ranging and intended to cover all of the key areas of opportunity highlighted during scoping work with the respiratory communities. These Commitments do not explicitly set out actions, but will form the basis of an implementation programme. A summary of these Commitments can be found in Annex B.

We will ensure a robust governance system by forming a National Advisory Group and ensure that the voice of people with lived experience informs all of the implementation phase. Wider policy developments will be monitored and using quality indicators, we will measure success of the programme over time.

Priority Areas:

1: Prevention

2: Diagnosis, Management & Care

3: Supporting Self-Management

4: Consistent Access Across Scotland

5: Our Workforce