Associate Feature: Two years into the Respiratory Care Action Plan, where is the transformation in lung health?

On the 25th April, we gathered at Holyrood to mark the two year anniversary of the Scottish Government’s Respiratory Care Action Plan (RCAP). We heard from the Jenni Minto MSP, Minister for Public Health and Women’s Health, Emma Harper MSP, one of the co-conveners of the Cross-Party Group on Lung Health and listened to the excellent Cheyne Gang, an Edinburgh based singing group for people living with lung conditions.

The Scottish Government has yet to release their most recent progress report looking at the achievements and failings of RCAP as it heads to the halfway mark in its five-year lifespan. 

Whilst things were challenging before the pandemic, they are far worse now. Only 25% of people with asthma are receiving the 3 components of basic asthma care – annual review, inhaler technique and asthma action plan, the lowest level since 2013. For people with chronic obstructive pulmonary disease (COPD) only 14.5% are receiving the 5 fundamentals of COPD care - offer treatment and support to stop smoking; offer pneumococcal and influenza vaccination; offer pulmonary rehabilitation (PR); co-develop a personalised self-management plan with the patient; or optimise treatment for co-morbidities.

Scotland has one of the highest respiratory death rates in Europe – 137 per 100,000, our rates are over 3 times higher than Finland, the best performing nation. Although we are grateful that we have a national action plan, we are concerned about the lack of progress. This can be seen in the unacceptable wait for, or indeed lack of, vital respiratory rehabilitation for thousands of people with a lung disease across the country. 

Pulmonary rehabilitation is important to improve muscle strength helping patients breathe more easily, leading to improved fitness and mental wellbeing. This reduces the risk of being admitted to hospital for emergency care. Pulmonary rehabilitation should be viewed as a key preventative spend that reduces costly hospital admissions and improves the quality of life for people with lung conditions.

Through freedom of information requests to all of Scotland’s health boards, we found in parts of Scotland, some people are waiting as long as 12-18 months (NHS Forth Valley) and that some health board waiting lists have more than doubled in the last two years (NHS Lanarkshire). Access to data is inconsistent and complex and we need action on data to build respiratory services where supply meets demand.

Our 2022 Annual COPD Survey found that only 50% of respondents in Scotland say there were offered pulmonary rehabilitation. 

Workforce planning is paramount to meeting the demand of patients waiting for pulmonary rehabilitation. We await the publication of the ‘best practice guidelines’ and to also hear from the Scottish Government how they will invest in training and recruitment in pulmonary rehabilitation services.

We are grateful to all staff working in pulmonary rehabilitation. We know the many pressures that they and the wider NHS workforce faces. It is imperative that the Scottish Government and health boards invest in pulmonary rehabilitation to ease the pressures on existing staff as well as support people with lung conditions who require access to pulmonary rehabilitation. 

Another area is the change in care for children as they transition to adult services. The vast majority of children who require support to transition to adult respiratory services are children with asthma. There has long been existing good practice across Scotland and we support the development of a ‘best practice’ document to be shared across the country for the benefit of all children and young people, regardless of their lung condition.

Another area of importance, and again one which is in development, is data collection. We warmly welcome the work that has begun to develop an audit programme in 2023-24. We wholeheartedly acknowledge that in order to improve respiratory services in Scotland, we need to know more about where things are going well and where there are gaps.

Collecting data, whether from the Scottish Government using parliamentary questions or from health boards through freedom of information requests, can be difficult, complex and inconsistent. This is problematic in assessing the scale of lung conditions in Scotland. For example, earlier this year we submitted freedom of information requests to health boards on waiting times for pulmonary requests and of the 14 health boards, only 7 provided information with different caveats attached. The other 7 responded to say they did not collect the information or that the costs to collect the data exceeded the limit for requests. 

Scotland exited the National Asthma and COPD Audit Programme and we hope that the work of the data sub-group will lead to Scotland being able to evidence and audit respiratory levels and outcomes. 

Publishing the Respiratory Care Action Plan during a global pandemic is a testament to the Scottish Government Ministers, civil servants and clinicians involved. It is with great thanks to them that we are able to mark two years since the publication.

Looking ahead, we are concerned that too much of the implementation of the Respiratory Care Action Plan rests of the shoulder of too few people, no matter how knowledgeable and experienced they may be. It is for this reason, and with a new Minister for Public Health and Women’s Health, we urge the Scottish Government to improve the leadership and governance of RCAP implementation. 

We are represented on the Scottish Respiratory Advisory Committee and the three priority sub-groups. Our recommendation to the Scottish Government is that the Minister for Public Health and Women’s Health joins the Scottish Respiratory Advisory Committee to improve leadership and enhance the implementation of the Plan and to hear for themself the opportunities and challenges involved in implementation. 

Last, but not least, we continue to call for full funding to ensure the implementation of RCAP across all 14 health boards. We have been calling for this since it was published in March 2021. It is vitally important that we invest in the respiratory workforce that cares, treats and supports the self-management for the 1 in 5 diagnosed with a lung condition. 

The last two years have flown by and we have a lot to do to deliver RCAP over the next 3 years. If the pandemic taught us one thing, it’s that services and systems can be transformed when there is need to do so. We’ve seen new processes and guidelines developed and rolled out. We’ve seen Scotland-wide working groups developed quickly to tackle firstly COVID and then Long COVID make a huge transformation. We now need that level of transformation for the 1 in 5 Scots living with a lung condition.

Let’s learn from others, build on what works and improve outcomes for people with lung condition in Scotland. We need the Scottish Government to deliver the ‘Action’ in Respiratory Care Action Plan.

For more information please visit www.asthmaandlung.org.uk/scotland.

This article is sponsored by Asthma + Lung UK Scotland