Two years on: living with a lung disease
We made recommendations about making sure people with a lung condition are able to live full and active lives and do the things that are important to them and their families. Here is what happened in 2020.
Comment from the PR Working Group Co-Chairs
The COVID-19 pandemic is shining the light on the role and benefit of pulmonary rehabilitation as never before.
We are concerned though that as the delivery of services are adapted due to COVID-19 that the ambitions for a significant expansion of PR, as set out in the Long Term Plan, may be compromised by a reallocation of effort and resource, including the designated funding for PR in 2020/21. This is worrying as it has happened at precisely the time that there is a growth in demand for PR, including from a new cohort of patients who have had COVID-19.
The Taskforce recognise the safe delivery of PR has had to change due to social distancing. In response some services have been able to adapt to providing a digital-based service. We commend the intent and pace of this innovation. However, at the moment there is too much variability in the quality of this digital provision, as well as there being some people who would benefit from PR, who don’t have digital access.
The Taskforce wants to see the resumption of face-to-face delivery as soon as it is safe to do so. We also want to ensure that there is a realistic allocation of funding and increased numbers and training for more rehabilitation staff to deliver high quality universal PR services both during and after any further waves of COVID-19. Our vision for the future of PR services will be set out in a Taskforce policy position paper that will be available in early 2021.
It will remain our priority in 2021 to continue to reiterate the strong evidence base for the benefits of PR to policy makers, as well as supporting the roll-out of more services.
Co-Chairs of the Taskforce for Lung Health pulmonary rehabilitation working group:
- Jess Eagelton, Asthma + Lung UK
- Robin Hinks, Chartered Society of Physiotherapy.
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Recommendation 4a: Every person with lung disease to have a personalised care and support plan. Patients, families and carers should have access to relevant information about their condition, treatment and management
Recommendation 4d: Promote and signpost people living with lung disease, families and carers to support groups which are run in joint leadership between people affected by lung disease and health care professionals
As part of the Long Term Plan, a NHS England and NHS Improvement (NHS E & I) working group has been set up in 2020 to design and develop a new programme which people will have access to when first diagnosed with asthma or COPD. It aims are to increase patients’ understanding and confidence, ensure everyone who is diagnosed with asthma or COPD has a clear plan for managing their condition and to signpost to wider support, such as peer support groups. After some delays getting started the group are now on track to develop a programme of work during 2021. This is encouraging news as better management of asthma and COPD should reduce attacks or exacerbations and reduce pressure on the health service, even more important as we strive to support people to keep themselves safe during COVID-19 and beyond.
Recommendation 4b: Improve access to pulmonary rehabilitation so that every person with an MRC breathlessness score of grade 2 and above is identified, referred to, and has the opportunity to complete, a programme
The way PR is delivered has changed significantly during 2020 as a result of COVID-19 restrictions. In response, the Taskforce has called for an options-based approach to service delivery so that everyone can access a programme in the way that is most appropriate for them. In support of this we also want to see more evidence being gathered on the most effective way of delivering digital PR.
At the start of the year the Taskforce developed and disseminated a toolkit to support local health systems supply for NHS funding to develop and expand PR services. Unfortunately, these funding applications were put on hold due to the pandemic and some of the programme’s funding in 20/21 has been reallocated. We hope resources will be available to support PR services in 2021.
In March 2020, a new NHS service specification was published setting out how PR should be delivered and we contributed during the development phase. The last guidance was published nearly a decade ago, so this is an important update in support of appropriate service design. The Taskforce has encouraged NHS E & I to include conditions other than COPD where PR has shown to be effective, including IPF.
The Taskforce has established a strong and positive relationship with NACAP and the PR Services Accreditation Scheme to improve the quality of PR services. In summer 2020 we supported the publication of the NACAP report on PR and the data went live on the lung health data tracker.
Prior to the pandemic we had consistently heard from people with lung disease that some can find it hard to access PR because of transport issues. We shared this intelligence with NHS E & I as part of their review of patient transport services and encouraged them to consider the availability of public transport and provide transport for people who cannot travel to PR classes through their own means. While the current reduction in face-to-face services means this is less of an issue, the Taskforce will continue to push for access to be considered when full services resume.