One year 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.
This is now recognised by the NHS Plan, in particular through its commitment to improve access to pulmonary rehabilitation (PR). NHS England has also set up a self-management programme which is a big step forward for personalised care. The ambition is that in future everyone diagnosed with a long-term lung condition will be referred straight to an education and management programme to learn more about their illness, how to look after themselves and when to seek further help. This is similar to the support available to people diagnosed with diabetes.
“The ultimate aim of the Taskforce is to improve life for people with a lung condition. One of the most effective treatments for lung disease is pulmonary rehabilitation and we want every patient who would benefit to have access to PR.”
"The publication of the NHS Plan, and parallel work around workforce, has been game-changing. We feel optimistic that it could be an impetus for driving improvements in access and availability of PR services. We are pleased that NHS England has identified PR as a priority and has set up its own working group. The Taskforce will contribute to this important work and continue to make the case for a more ambitious approach so that every patient with lung disease who would benefit can access PR.”
“National stakeholders, within the NHS and elsewhere, have consistently pointed to the value in having the respiratory community speak as one voice. The Taskforce is a strong, representative voice for the community, and can operate within and beyond the NHS Plan.”
Robin Hinks, Chartered Society of Physiotherapy and Jess Eagelton, British Lung Foundation - Co-Chairs of the Taskforce for Lung Health pulmonary rehabilitation working group
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.
With the NHS Plan making a commitment to expand PR services and increase referrals, the Taskforce has established a PR working group to take advantage of these opportunities in a changing landscape. We’re pleased to be in dialogue with NHS England and have representation on the NHS PR working group.
The Taskforce welcomes the ambitions of the NHS Plan, although we would like to see more being done sooner. The NHS Plan focuses on PR for people with chronic obstructive pulmonary disease (COPD). Our PR working group wants to see all people with an MRC score of grade 2 and above who would benefit, referred to PR. This includes people with other lung conditions such as those with an interstitial lung disease (ILD). We also want people to be able to maintain exercise after they complete PR.
NHS RightCare has launched a National Priority Initiative on respiratory, which includes a baseline assessment for local areas to complete on PR. A new indicator was also added to the GP Quality Outcomes Framework, meaning GP surgeries are incentivised to report and increase the number of patients they refer for PR.
This year, the Royal College of Physicians' National Asthma and COPD Audit Programme started a continuous audit of PR services, which will collect data on patients who receive PR. The RCP also launched a new accreditation scheme to improve the quality of PR services.
The Taskforce has written to all local areas to encourage them to prioritise respiratory in their proposals to implement the NHS Plan, supported by additional funding available for expanding PR services. The working group then followed on from this correspondence with offers to support the development of local PR plans. We hope to work with areas that receive the first wave of NHS funding and those piloting joint cardiac and respiratory rehabilitation models to share best practice and learnings.
We’ve also been collaborating with a coalition of charities and academics to promote everyone’s right to access rehabilitation. Read about the Right to Rehab.
"Learning how to belly breathe and to manage walking to increase mobility and muscle strength takes the fear out of going out into the community and has helped me no end."
Annette, who lives with a lung condition
“The Taskforce has served as a catalyst to the development of our Right to Rehab campaign, which draws together stakeholders from across the rehabilitation community.”
Robin Hinks, Chartered Society of Physiotherapy (secretariat to Right to Rehab) and co-chair of Taskforce Pulmonary Rehabilitation Working Group
“The starting point should be the diagnosis to ensure that any physical therapy under consideration is fully aligned with the patient condition’s key characteristics.”
Fran, who lives with a lung condition