Three 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 2021.

    Comment from the PR Working Group Co-Chairs

PR services have been severely interrupted by the ongoing impact of the COVID-19 pandemic. Despite many providers endeavouring to make the switch to online provision, services’ capacity has been disrupted by staffing shortages, clinicians’ redeployment to acute care services and needing to provide long-COVID related rehabilitation. As a consequence, our vision to see both improved access and quality of PR provision remains compromised, as does the ambitions set out in the Long Term Plan. Funding allowances remain uncertain and piecemeal despite the high and rising demands on PR services and this will undoubtedly limit progress.

The move to online provision has provided an important service to patients in the absence of comprehensive face-to-face PR. However, only offering remote provision is not a long-term solution; it is leaving too many people missing out and adding to health inequalities. The best outcomes from PR for people with lung disease come from the completion, and maintenance, of face-to-face PR, complemented with remote and digital options, if appropriate, where it improves access and meets patients’ individual needs.

That is why this year, and in 2022, we will continue to push for the resumption and expansion of in-person services, which incorporate remote options as part of a hybrid model, delivered to the high-quality standards all patients deserve.

In 2021, in support of our rally-call for PR, Taskforce have produced briefing packs for MPs,  calling on them to press their local areas for increased provision. This draws on the latest published NACAP audit data. We have also created an information video for patients explaining the benefits of participating in PR that we have asked our members to help distribute widely over the coming months.

Next year, we look forward to seeing NHS England’s new five year vision for PR as this is such a crucial aspect of helping people with lung disease to live well.

Co-Chairs of the Taskforce for Lung Health pulmonary rehabilitation working group:

  • Rachael Colclough, Association of Chartered Physiotherapists in Respiratory Care  
  • Rachel Newton, Chartered Society of Physiotherapy

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 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 NHS England pulmonary rehabilitation (PR) group, which was set up to support the PR ambitions in the Long Term Plan has not met since Autumn 2020, which means we have had limited opportunities to influence change in 2021. After a substantial delay, PR funding has now been made available to all NHS regions to support service delivery. However, based on the feedback we have received, we have concerns that the level and distribution of this funding is insufficient to be truly transformative and to address the growth in demand. 

Our Taskforce PR Working Group has, and will continue, to make the case to NHS England, as well as directly to MPs, for appropriate funding to support the provision of high-quality PR for all who can benefit. In support of this, we have developed and disseminated targeted briefing packs for MPs in England about the demand and access to PR in their constituencies, urging them to raise the importance of prioritising and funding PR provision in their local areas. These packs include local data on PR referral rates, waiting times, completion rates.

A key aspect of increasing uptake of PR is to raise awareness of its benefits amongst people with lung disease so that patients can ask healthcare professionals about their eligibility for a referral to take part. This year, Taskforce have recruited a range of people who are currently participating in both face-to-face and remote classes, to feature in a short 3 minute film that sets out the physical health and mental health benefits of PR. The film is available for our members and local service providers to use freely. It will also form a central part of our work during PR Week in March 2022.

Next year, we are expecting the publication of NHS England’s new five year vision for PR.  We hope policy makers will seize this opportunity to take a bold look at PR, identifying and filling the current gaps in accessing high-quality services. Our ambition is to see commitment, and resources, for a significant expansion in capacity and improved consistency in the delivery of the highest quality of services. We will seek to influence this vision, including expanding access to people with MRC breathlessness scores of grade 2, to help even more people living with lung disease have the opportunity to benefit from PR.

As part of our work to drive up standards, the PR Working Group will also continue to foster relationships with the Royal College of Physicians’ Pulmonary Rehabilitation Accreditation Scheme (PRAS). This will not only improve quality but supports the regular collection of accurate PR data. 

Given the emergence of digital PR provision, we are keen to see NHS England and others gather more and better quality data about the effectiveness of remote and mixed model approaches, as there is currently little evidence about the benefit it brings to patients. We also want an expansion in the data that is collected about patients who are eligible for, who participate in, and who complete pulmonary rehabilitation. This will help improve our collective understanding of patterns of access and tackle health inequalities.

Data on PR services using the latest NACAP information is available at our Lung health data tracker and in 2022, the data tracker will also include data on PR for people with IPF.