Four years on: living with a lung disease

We made recommendations about making sure people with lung conditions are able to live full and active lives and do the things that are important to them and their families. Here’s what happened in 2022. 

Comment from the PR Working Group Co-Chairs 

Our work in 2022 has been focused on influencing NHS England and their development of a five year vision for pulmonary rehabilitation. We’re excited about the potential of this work. A bold forward-facing vision will enable not only the delivery of the commitments to PR already set out in the NHS Long Term Plan, but will hopefully extend the ambitions further. The Taskforce feels this is essential if we are to achieve the transformational and innovative approaches to the delivery of PR that will ensure more people living with lung conditions can benefit from high quality PR services.   

In recognition of the progress the group had made to-date and given the development of NHS England’s 5 year vision, in June 2022 we decided to reallocate our influencing resources to focus on other areas of work as set out in our five year plan. Our determination to see an expansion of PR services cannot be fully realised without first having an increased and more sustainable workforce. We know that many PR staff were redeployed during the COVID-19 pandemic to help frontline services, whilst some were also drawn into staffing Long COVID clinics, leading to worsening shortages. Given that access to PR issues could largely be addressed if there are more staff to offer and support services, it is fitting to now seek progress on workforce related issues.

We will continue to monitor progress with regards to changes in policies and practices related to PR, and will also provide support to the activity of our members, as relevant. This includes supporting the influencing work of the Chartered Society of Physiotherapy and the Community Rehabilitation Alliance to improve access to high quality services as well as activity to expand the PR eligibility criteria. 

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 

In 2022, we have worked to shape the scope and ambition of NHS England’s new five year vision for PR. This vision has the potential to provide a valuable framework to shape services, as well as providing a means to ensure the NHS is held to account in the coming years. Importantly, the NHS Long Term Plan focused on PR specifically and was particularly focused on increasing uptake among people with COPD. To influence a broadening in scope and a raising of ambition, the Taskforce produced a briefing paper setting out our position and reiterating our recommendations for the changes needed to support a meaningful improvement of PR services for people with a range of different respiratory conditions. Vitally, we set out that the eligibility criteria must be expanded to allow access for people with MRC breathlessness scores of grade 2. We have also reiterated the importance of supporting patients to live well before they become eligible for PR and exercise maintenance after they have completed a PR course.  

Taskforce has joined NHS England’s PR Steering Group, along with several of its accompanying working groups, and successfully pushed for lived experience representation from patients. We have also provided feedback on drafts of the five year vision and wider PR elements of the Long-Term Plan refresh.  

This year shows encouraging progress with evaluation of the quality of PR services, with the continued growth of registrations for the Royal College of Physicians PRSAS accreditation process. Taskforce sits on the PRSAS steering committee and in 2022 there were 54 new registrations. This means that 125 out of 190 PR services (66%) are now registered to take part in the process of getting accredited, with seven having received full accreditation and four currently undergoing assessment.  

Taskforce’s short film about the benefits of PR has stories from people with lung conditions who have undertaken PR. It launched at the end of 2021 and throughout 2022 it was taken up and used by our members and other partners. We hope to see a continued growth in its distribution in 2023 and beyond.

In July 2022, the Royal College of Physicians and the National Asthma and COPD Audit Programme (NACAP) published a PR organisational report that presented information on 133 out of 200 (66.5%) PR services in England and Wales, with data gathered from November to December 2021. The findings should help support commissioners and providers to review their standards of service and care and identify their improvement priorities. Taskforce provided input at the drafting stage of the report.