We want people with lung disease to live full and active lives and continue to do the things that are important to them and to their families.
Unfortunately, at the moment the NHS is set up to help when things go wrong, rather than to help people stay well. Whilst we look for cures for lung diseases in Scotland, the evidence supporting self-management interventions for asthma is very strong and it should be seen as an exemplar condition to trial connected technologies, such as smart inhalers to help people better self-manage their condition.
Education is key to improving understanding of lung diseases, helping achieve an earlier diagnosis and improved self-management. Having confident and informed people with lung conditions at the centre of the decision-making processes will allow them to take ownership of their conditions, leading to fewer unplanned primary care consultations, reductions in visits to outpatient departments, reduced hospital admissions and reduced length of stays in hospital.
People with chronic lung disease benefit greatly from a multi-disciplinary approach to care and gain the most benefit from this care if delivered in the community, closer to home. This ensures that individuals have two key elements of care: physical and psychological support. These are important, when living with such debilitating chronic disease, to help the individual cope with distressing symptoms such as breathlessness, as well as ensuring that respiratory infections are treated earlier to prevent worsening structural damage to the lungs.
In Scotland, 64% of people are not receiving the basic care they need to manage their asthma well, contributing to over 6,000 emergency hospital admissions in Scotland a year and around 100 asthma-related deaths. People who have an asthma action plan are better equipped to manage their symptoms and so less likely to be admitted to hospital for their asthma.
The most cost-effective treatment for lung disease such as COPD is access to pulmonary rehabilitation (PR) which isa programme of exercise and education for people with a long-term lung condition. Sadly, too few patients have easy access to PR and often must wait until their condition worsens before they can benefit.
In addition to PR we would like to see all patients with a respiratory diagnosis offered a referral to the exercise referral schemes across Scotland or for GPs to administer social prescribing which they feel would benefit the patient in dealing with their respiratory disease.
It is important to note that traditional exercise, whilst important, is not the only solution available to people with lung disease. Many benefit physically and emotionally from taking part in singing groups. Singing is a great exercise that helps the patient to regulate their breathing and helps them deal with breathlessness.
Currently we have a reactive approach to self-management, with many people with asthma only interacting with healthcare services and engaging with their asthma during and soon after an asthma attack. The NHS needs to take a more proactive approach where patient data is used to monitor and predict when someone is at risk of an asthma attack or is required to make changes to their asthma management. To make this a reality, improved data sharing between healthcare services and the incorporation of technologies into pathways is vital.
Thousands of people across Scotland have been affected by Covid-19 and a number of these will be impacted by post-Covid breathlessness and need ongoing support. As the number of people treated for Covid at hospital decreases, we must not lose sight of these people. What the pandemic highlighted was lack of support for people living with lung conditions, particularly those self-isolating in the vulnerable shielded groups. The use of digital self-management helped to provide assistance during this critical period. We are calling for services like social prescribing and PR to be delivered digitally more often, especially in the flu season, where at-risk groups choose to socialise less and minimise contact. Providing funding for such digital innovation can help those who self-isolate during such periods to continue to stay active and well.
Finally, as the long-term effects of Covid-19 are still unknown, we are calling for continued monitoring and support for those who have experienced the virus. Through continued research of the symptoms and the effects of Covid-19, (such as our “Post Covid Hub”) we can deliver a commitment to protect groups now vulnerable from the virus.
Asthma + Lung UK Scotland are calling for:
- Every person living with asthma to have a personalised digital asthma action plan.
- Every person living with COPD to be taught how to manage their condition when they are newly diagnosed and issued a self-management pack.
- Every person living with the long-term effects of COVID-19 to be supported through tailored rehabilitation.
- Regional education days to be provided for people with less prevalent conditions such as severe asthma, bronchiectasis and IPF, to help manage their conditions.
- Pulmonary rehabilitation programmes to be expanded so they are not only available to people with moderate to severe COPD.
- Social prescribing to be expanded so that it can support more people living with chronic lung conditions to stay active and keep well.
- Singing for Lung Health to be funded in every health board.
- Better data sharing between primary and secondary care in Scotland.
- Digital self-management tools to be rolled out across Scotland.
- People living with terminal lung conditions such as mesothelioma to get the palliative care support they need.
- Everyone living with COPD, bronchiectasis and IPF should have the right to pulmonary rehabilitation.
We are therefore calling candidates of the 2021 Scottish General Election to support the below pledge:
“I _________ as a candidate for the Scottish Parliament for ________ will fight for access to pulmonary rehabilitation to be expanded to all people with mild COPD, bronchiectasis and IPF.”