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.
While we look for a cure to lung disease in Wales, the evidence supporting self-management interventions for asthma is very strong, and 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 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.
61% of people in Wales are not receiving the basic care they need to manage their asthma well, contributing to over 3,319 emergency hospital admissions in Wales a year and around 74 asthma related deaths. We have the lowest uptake of asthma action plans in the UK and this cost-effective intervention has been shown to improve quality of life and keep people well.
The most cost-effective treatment for lung disease such as COPD is access to Pulmonary Rehabilitation (PR) which a 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 than benefit from the exercise. We believe that more must be done to improve access to PR.
Following on from pulmonary rehabilitation the National Exercise Referral Scheme (NERS) operates in every part of Wales to allow people to remain active and stay healthy in a local leisure centre. The scheme supports people with a huge variety of health conditions, but there has been an ongoing Welsh Government review and funding has not increased for a number of years, restricting the number of people who can access these services.
Another way of staying active is through Singing for Lung Health, a programme that Asthma + Lung UK has been rolling out across Wales. Evidence shows that singing can reduce shortness of breath, improve symptom management, improve quality of life and reduce loneliness and isolation. Whilst Singing for Lung Health groups exist across Wales, only Betsi Cadwaladr UHB funds the singing instructors.
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 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.
COVID-19 brought its own challenges and problems for the nation to address. 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 such services like NERS and PR to be delivered digitally more often, especially during the peak of the flu season, where at risk groups choose to socialise less and minimise contact. By providing funding for such digital innovation those who self-isolate during such periods can 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, (like the ‘Post Covid Hub’) we can deliver a commitment to protect groups now vulnerable from the virus.
Asthma + Lung UK Wales are calling for:
- Every person living with asthma to have a personalised 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.
- 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 should be expanded so they are not only available to people with moderate to severe COPD.
- NERS 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 Wales.
- Digital self-management tools to be rolled out across Wales.
We are therefore calling candidates of the 2021 Senedd elections to support the below pledge:
No matter where you are in Wales, if you need access to pulmonary rehabilitation, it should be available. I want the next Senedd to increase access to PR for everyone with mild COPD, bronchiectasis and IPF.